Debbie Case held an insulated bag with two packaged meals — a sandwich wrap and fruit for lunch, a burrito and cauliflower for dinner.
“You’re going to eat well today,” Case told 75-year-old Dave Kelly as she handed him the meals. Kelly lost his sight about two years ago and reluctantly gave up cooking.
After putting the food away, Kelly chatted with Case about his experience as a folk musician. As they talked in his living room, Case, CEO of San Diego County’s Meals on Wheels program, glanced around for hazards that could cause Kelly to fall.
Kelly said the homemade meals keep him from eating too much frozen food or take-out. But more than that, he said he appreciates someone coming by to check on him every day.
“Anything could happen,” Kelly said, adding that he worries about falling. “I wouldn’t want to lay around and suffer for days.”
Meals on Wheels is undergoing a dramatic overhaul as government and philanthropic funding fails to keep pace with a rapidly growing elderly population. The increased demand has resulted in lengthy waitlists and a need to find other sources of funding. And at the same time, for-profit companies such as Mom’s Meals are creating more competition.
Meals on Wheels, which has served seniors for more than 60 years through a network of independent nonprofits, is trying to formalize the health and safety checks its volunteers already conduct during their daily home visits to seniors. Through an ongoing campaign dubbed “More Than a Meal,” the organization hopes to demonstrate that it can play a critical role in the health care system.
“We know we are keeping people out of the hospital,” Case said. “Seven dollars a day is cheaper than $1,300 a day.”
Meals on Wheels America and several of the local programs around the country have launched partnerships with insurers, hospitals and health systems. By reporting to providers any physical or mental changes they observe, volunteers can help improve seniors’ health and reduce unnecessary emergency room visits and nursing home placements, said Ellie Hollander, CEO of Meals on Wheels America.
“It’s a small investment for a big payoff,” Hollander said.
Studies conducted by Brown University researchers have shown that meal deliveries can help elderly people stay out of nursing homes, reduce falls and save states money.
Kali Thomas, an assistant professor at Brown University School of Public Health, estimated that if all states increased the number of older people receiving the meals by 1 percent, they would save more than $100 million. Research also has shown that the daily meal deliveries helped seniors’ mental health and eased their fears of being institutionalized.
Meals on Wheels can be the “eyes and ears” for health providers, especially in the case of seniors who are ill and don’t have family nearby, said Thomas, who authored several studies of the organization.
Meals on Wheels has “the potential to capitalize on that,” she said. “They realize they are doing something that is unique and needed in our current health care space.”
Visitors from Meals on Wheels are the only people some seniors see all day. The volunteers get to know them and can quickly recognize problems.
“You notice if they are losing weight, if their house is a mess, if they are talking awkwardly,” said Chris Baca, executive director of Meals on Wheels West in Santa Monica. “Our wellness check is critical and almost as important as the food itself.”
The meal delivery and in-home visits also reduce isolation among residents, said Zia Agha, chief medical officer for West Health, which has organizations that provide and study senior services. Agha said that while numerous high-tech gadgets are available to keep an eye on seniors, they can’t replace a volunteer’s human touch.
Meals on Wheels, Brown University and the West Health Institute recently launched a two-year project in six states to formally build health and safety screenings into daily meal deliveries. The goal is to improve seniors’ health and catch problems early.
“The fact that you don’t have resources to feed yourself or you are so frail you can’t cook is a very big marker that you are going to have high health care utilization,” Agha said. “There is value in targeting these clients through this meal delivery service.”
That’s also what Meals on Wheels America is planning to do in a new partnership with Johns Hopkins Bayview Medical Center and Meals on Wheels of Central Maryland. The project aims to keep seniors at home and reduce their need for costly health services after hospitalization. The idea is to have trained volunteers report red flags and ensure, for example, that patients with congestive heart failure are weighing themselves regularly and eating properly.
Dan Hale, who is leading the project from the hospital, said the meal delivery volunteers can help track patients’ health even months after discharge and keep them from returning to the hospital. “It makes sense financially,” he said.
Funding for Meals on Wheels organizations primarily comes from the federal government, state organizations and donors.
The partnerships with health care organizations and insurers mean additional money for the Los Angeles County programs, said Baca, who heads a countywide association of local Meals on Wheels organizations.
On a recent day in Santa Monica, volunteers showed up just after 10 a.m., loaded up their cars with meals and headed out to deliver them. One of the clients, 58-year old Patrick Ward, receives daily meals at his apartment in Venice.
Ward, who has osteoarthritis and knee problems, said he has fallen numerous times and also had a heart attack this year. He said he can take care of himself pretty well, but his lack of mobility makes cooking difficult.
“It takes one thing out of the day that I don’t have to worry about,” Ward said. “I know they are going to be here every day.”
One in three women with breast cancer detected by a mammogram is treated unnecessarily, because screening tests found tumors that are so slow-growing that they’re essentially harmless, according to a Danish study published Monday in Annals of Internal Medicine, which has renewed debate over the value of early detection.
The study raises the uncomfortable possibility that some women who believe their lives were saved by mammograms were actually harmed by cancer screenings that led to surgery, radiation and even chemotherapy that they didn’t need, said Dr. Otis Brawley, chief medical officer of the American Cancer Society, who wrote an accompanying editorial but was not involved in the study.
Researchers increasingly recognize that not all breast cancers pose the same risk, even if they look the same under a microscope, Brawley said. While some early tumors turn into deadly monsters, others stop growing or even shrink. But assuming that all small breast lesions have the potential to turn deadly is akin to “racial profiling,” Brawley wrote in his editorial.
“By treating all the cancers that we see, we are clearly saving some lives,” Brawley said in an interview. “But we’re also ‘curing’ some women who don’t need to be cured.”
Although experts such as Brawley have long discussed the risks posed by “overdiagnosis,” relatively few women who undergo cancer screenings are even aware of the debate.
The American College of Radiology, which strongly supports breast cancer screenings, acknowledges that mammograms lead some women to be treated unnecessarily, but said the problem is much less common than the new study suggests. Another study from Denmark – whose national health program keeps detailed records – estimated the overdiagnosis rates at only 2.3 percent.
“The amount of overdiagnosis really is small,” said Dr. Debra Monticciolo, chair of the American College of Radiology’s Commission on Breast Imaging. “Articles like this aren’t very helpful,” she said, because they leave women confused about how to be screened for breast cancer.
Yet treating women for cancer unnecessarily can endanger their health, said Fran Visco, president of the National Breast Cancer Coalition, an advocacy group. Radiation can damage the heart or even cause new cancers. Visco notes that breast cancer activist Carolina Hinestrosa, a vice president at the coalition, died at age 50 from soft-tissue sarcoma, a tumor caused by radiation used to treat an early breast cancer.
Women should understand these risks, Visco said. Instead, women often hear only about mammograms’ benefits.
“Women have been inundated with the early detection message for decades,” Visco said.
The risks of overdiagnosis and false positives, which can lead women with benign growths to undergo biopsies and other follow-up tests, have caused some experts to reevaluate breast cancer screenings. Although mammograms don’t find all tumors, they reduce the risk of dying from breast cancer by 25 percent to 31 percent for women ages 40 to 69, according to the Agency for Healthcare Research and Quality, part of the Department of Health and Human Services.
Medical groups now offer differing advice on mammograms:
The U.S. Preventive Services Task Force, an independent expert panel that advises the federal government on health, provoked a firestorm of criticism in 2009 when it bucked that advice, recommending that women get mammograms every other year beginning at age 50. The group noted that breast cancer risk rises with age, so mammograms are more likely to discover cancer – as opposed to benign growths – after age 50.
The American Cancer Society also scaled back its screening advice in 2015, recommending women get annual mammograms from 45 to 54, followed by screenings every other year after that.
In the new study, Danish researchers estimated the rate of overdiagnosis by comparing the number of early-stage and advanced breast tumors before and after the country started offering mammograms. If screenings work as intended, the number of small, curable breast tumors should increase, while reducing the number of large cancers by about the same amount.
Although mammograms in Denmark detected a lot more breast cancers, these were mostly small, early-stage tumors, said study coauthor Dr. Karsten Jorgensen, a researcher at the Nordic Cochrane Center in Copenhagen, Denmark. The number of advanced cancers did not fall.
The debate about overdiagnosis illustrates the limits of medical technology, Brawley said.
Although researchers can estimate the statistical rate of overdiagnosis, doctors treating actual patients can’t definitively tell which breast tumors need treatment and which might be safely ignored, Brawley said. So doctors tend to err on the side of caution and treat all breast cancers with surgery and, in many cases, radiation and chemotherapy.
An estimated 253,000 new cases of breast cancer will be diagnosed in U.S. women this year, with nearly 41,000 deaths, according to the American Cancer Society.
An additional 63,000 women will be diagnosed with ductal carcinoma in situ, also known as DCIS, which has some, but not all, of the typical traits of cancer. Although DCIS cells have changed to appear malignant under the microscope, they haven’t invaded surrounding tissue.
The American Cancer Society defines DCIS as the earliest stage of breast cancer, and women with the condition typically undergo the same treatment given to women with early invasive cancers. Although DCIS isn’t life-threatening, doctors recommend treating it to prevent it from becoming invasive.
Other experts note that DCIS carries such low risk that it should be considered merely a risk factor for cancer. Researchers are conducting studies to measure whether it’s safe to scale back treatment of DCIS.
A new analysis indicates that many cancer survivors change their prescription drug use (including skipping doses or requesting cheaper medications) for financial reasons. Published early online in CANCER, a peer-reviewed journal of the American Cancer Society, the study provides important information on the financial burden experienced by cancer survivors, suggesting non-elderly cancer survivors are particularly vulnerable to this phenomenon.
Although research has shown that cancer drugs can represent considerable costs for cancer patients and their families, there is limited information about changes in prescription drug use for financial reasons among cancer survivors. To further investigate this, researchers from the American Cancer Society, the Centers for Disease Control and Prevention (CDC), and the National Institutes of Health used 2011-2014 data from the National Health Interview Survey, an annual household interview survey conducted by the CDC. This nationally representative survey included 8931 cancer survivors and 126,287 individuals without a cancer history.
Among non-elderly adults, 31.6 percent of those who had been recently diagnosed and 27.9 percent of those who had been previously diagnosed (at least two years earlier) reported a change in prescription drug use for financial reasons, compared with 21.4 percent of adults without a history of cancer. “Specifically, non-elderly cancer survivors were more likely to skip medication, delay filling a prescription, ask their doctor for lower-cost medication, and use alternative therapies for financial reasons compared with non-elderly individuals without a cancer history,” said the American Cancer Society’s Ahmedin Jemal, DVM, PhD, a senior author of the paper. The study also showed that among privately insured non-elderly cancer survivors, one-third of survivors enrolled in high-deductible plans asked their doctor for lower-cost medications compared with less than one-fifth of survivors enrolled in low-deductible plans.
Changes in prescription drug use for financial reasons were generally similar between elderly cancer survivors and elderly individuals without a cancer history. This is likely because of uniform healthcare coverage through Medicare.
The findings may have significant policy implications. “Healthcare reforms addressing the financial burden of cancer among survivors, including the escalating cost of prescription drugs, should consider multiple comorbid conditions and high-deductible health plans, and the working poor,” said Dr. Jemal. “Our findings also have implications for doctor and patient communication about the financial burden of cancer when making treatment decisions, especially on the use of certain drugs that cost hundreds of thousands of dollars but with very small benefit compared with alternative and more affordable drugs.”
In an accompanying editorial addressing the financial toxicity of cancer, Daniel Goldstein, MD, of the Rabin Medical Center in Israel and Emory University, stressed the need to avoid unnecessary testing and treatments. He added that “when two different treatments exist with equivalent efficacy and safety, the cheaper treatment should always be chosen.”
Full Citation: “Do cancer survivors change their prescription drug use for financial reasons? Findings from a nationally representative sample in the United States.” Zhiyuan Zheng, Xuesong Han, Gery P. Guy Jr., Amy J. Davidoff, Chunyu Li, Matthew P. Banegas, Donatus U. Ekwueme, K. Robin Yabroff, and Ahmedin Jemal. CANCER; Published Online: February 20, 2017 (DOI: 10.1002/cncr.30560).
About the Journal CANCER is a peer-reviewed publication of the American Cancer Society integrating scientific information from worldwide sources for all oncologic specialties. The objective of CANCER is to provide an interdisciplinary forum for the exchange of information among oncologic disciplines concerned with the etiology, course, and treatment of human cancer. CANCER is published on behalf of the American Cancer Society by Wiley and can be accessed online at http://wileyonlinelibrary.com/journal/cancer.
About Wiley Wiley, a global company, helps people and organizations develop the skills and knowledge they need to succeed. Our online scientific, technical, medical, and scholarly journals, combined with our digital learning, assessment and certification solutions help universities, learned societies, businesses, governments and individuals increase the academic and professional impact of their work. For more than 200 years, we have delivered consistent performance to our stakeholders. The company’s website can be accessed at www.wiley.com.
Home health agencies will be required to become more responsive to patients and their caregivers under the first major overhaul of rules governing these organizations in almost 30 years.
The federal regulations, published last month, specify the conditions under which 12,600 home health agencies can participate in Medicare and Medicaid, serving more than 5 million seniors and younger adults with disabilities through these government programs.
They strengthen patients’ rights considerably and call for caregivers to be informed and engaged in plans for patients’ care. These are “real improvements,” said Rhonda Richards, a senior legislative representative at AARP.
Home health agencies also will be expected to coordinate all the services that patients receive and ensure that treatment regimens are explained clearly and in a timely fashion.
The new rules are set to go into effect in July, but they may be delayed as President Donald Trump’s administration reviews regulations that have been drafted or finalized but not yet implemented. The estimated cost of implementation, which home health agencies will shoulder: $293 million the first year and $234 million a year thereafter.
While industry lobbying could derail the regulations or send them back to the drawing board, that isn’t expected to happen, given substantial consensus with regard to their contents. More likely is a delay in the implementation date, which several industry groups plan to request.
“There are a lot of good things in these regulations, but if it takes agencies another six or 12 months to prepare let’s do that, because we all want to get this right,” said William Dombi, vice president for law at the National Association for Home Care & Hospice (NAHC).
Home health services under Medicare are available to seniors or younger adults with disabilities who are confined to home and have a need, certified by a physician, for intermittent skilled nursing services or therapy, often after a hip replacement, heart attack or a stroke.
Patients qualify when they have a need to improve functioning (such as regaining the strength to walk across a room) or maintain abilities (such as retaining the capacity to get up from a chair), even when improvement isn’t possible. These services are not for patients who need full-time care because they’re seriously ill or people who are dying.
Several changes laid forth in the new regulations have significant implications for older adults and their caregivers:
In the past, patients have been recipients of whatever services home health agencies deemed necessary, based on their staffs’ evaluations and input from physicians. It was a prescriptive “this is what you need and what we’ll give you” approach.
Now, patients will be asked what they feel comfortable doing and what they want to achieve, and care plans will be devised by agencies with their individual circumstances in mind.
“It’s much more of a ‘help me help you’ mentality,” said Diana Kornetti, an industry consultant and president of the home health section of the American Physical Therapy Association.
While some agencies have already adopted this approach, it’s going to be a “sea change” for many organizations, said Mary Carr, NAHC’s vice president for regulatory affairs.
For the first time, home health agencies will be obligated to inform patients of their rights — both verbally and in writing. And the explanations must be communicated clearly, in language that patients can understand.
Several new rights are included in the regulations. Notably, patients now have a right to receive all the services deemed necessary in their plans of care. These plans are devised by agencies to address specific needs approved by a doctor, such as speech therapy or occupational therapy, and usually delivered over the course of a few months, though sometimes they last much longer. Also, patients must be informed about the agency’s initial comprehensive assessment of the patient’s needs and goals, as well as all subsequent assessments.
A patient’s rights to lodge complaints about treatment and be free from abuse, which had already been in place, are described in more detail in the new regulations. The government surveys home health agencies every three years to make sure that its rules are being followed.
NAHC officials said they planned to develop a “notice of rights” for home health care agencies, bringing greater standardization to what has sometimes been an ad hoc notification process.
For the first time, agencies will be required to assess family caregivers’ willingness and ability to provide assistance to patients when developing a plan of care. Also, caregivers’ other obligations — for instance, their work schedules — will need to be taken into account.
Previously, agencies had to work with patients’ legal representatives, but not “personal representatives” such as family caregivers.
“These new regulations stress throughout that it’s important for agencies to look at caregivers as potential partners in optimizing positive outcomes,” said Peter Notarstefano, director of home and community-based services for LeadingAge, a trade group for home health agencies, hospices and other organizations.
Plans Of Care
Now, any time significant changes are made to a patient’s plan of care, an agency must inform the patient, the caregiver and the physician directing the patient’s care.
“A lot of patients tell us ‘I’ve never seen my plan of care; I don’t know what’s going on; the agency talks to my doctor but not to me,’” said Kathleen Holt, an attorney and associate director of the Center for Medicare Advocacy. The new rules give “patients and the family a lot more opportunity to have input,” she added.
In another notable change, efforts must be made to coordinate all the services provided by therapists, nurses and physicians involved with the patient’s care, replacing a “siloed” approach to care that has been common until now, Notarstefano said.
Allowable reasons for discharging a patient are laid out clearly in the new rules and new safeguards are instituted. For instance, an agency can’t discontinue services merely because it doesn’t have enough staff.
The government’s position is that agencies “have the responsibility to staff adequately,” Carr of NAHC said. In the event a patient worsens and needs a higher level of services, an agency is responsible for arranging a safe and appropriate transfer.
“Agencies in the past have had the ability to just throw up their hands and say ‘We can’t care for you or we think we’ve done all we can for you and we need to discharge you,’” Holt said. Now a physician has to agree to any plan to discharge or transfer a patient, and “that will offer another layer of protection.”
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
As we grow old, our bodies and immune system becomes weak and we get prone to developing various health issues. In addition to the possibility of developing various diseases commonly associated with old age, such as dementia, diabetes, and cardiovascular diseases, increasing age also limits our mobility.
Joint pain and arthritis are common problems among the elderly. Even if people take good care of themselves and keep the diseases at bay, they do get affected by mobility issues as they age which affect the quality of their lives.
Here comes the role of assistive technology. Commonly known as mobility aids, the sole purpose for the development of these tools is to enable the elderly to continue with their activities and regular lifestyle. With the help of assistive technology, seniors can avoid becoming dependent on their family members or nurses, and can perform their tasks on their own.
What Comes Under Assistive Technology?
Dr. Helen Hoenig, an Associate Professor at Duke University and Chief of Physical Medicine and Rehabilitation at Durham VAMC, assistive technology can be defined as “all those devices that are used to compensate for physical limitations”. According to her, the term can be narrowed down to refer to those devices, tools, orthotics, and prosthetics that are used to help someone carry out an activity.
How Assistive Technology Helps in Improving the Quality of Life for Elderly
Seniors, when faced with limited mobility, become dependent on others for carrying out even the simplest of tasks of their daily lives, such as walking, eating, self-cleaning, and changing clothes. Many people fail to accept this new reality of life or do not like to ask for help in the simplest acts. In the absence of any solution, seniors become unhappy and even go into depression.
On the other hand, dealing with older people with limited mobility is also a difficult and challenging task for their families. When family members are unable to take good care of such old people, they transfer them to nursing facilities or assisted living centers. Moving away from their loved ones is even more disturbing for a majority of seniors and makes them more unhappy and depressed.
Mobility Aids can be of extreme help in such situations, both for the elderly and their families. They improve the mobility of the elderly and thus, enable them to perform their own tasks. Also, when seniors have such helpful devices, they do not give up on life and continue pursuing their interests. In this way, the increasing age does not affect the quality of their lives.
Common Mobility Aids and Their Link to Happiness
Mobility aids that are most commonly needed and used by elderly include:
Portable lifters and Ramps
Recline and Lift Chairs
Car Transfer Aids
With the use of any one or multiple of the above mentioned devices, the quality of life improves in old age. This may not be important to young and healthy people but for seniors, even the ability to continue living a normal life despite suffering from limited mobility is of great pleasure. If an old person with arthritis is able to visit his/her friends, to go to his/her favorite restaurant, or the nearest park, the pleasure he/she will get is beyond comparison.
No one can predict the future. As mom and dad start to age and life gets a little more challenging, we do our best to tend to their medical needs to keep them as healthy for as long as possible. But one area that is often overlooked by many parents and their kids is having the money talk. Who inherits any assets that mom and dad have? Who oversees the estate? Is there enough money to pay for a home healthcare worker if needed?
When illness or death strikes, it’s a stressful time. To make things easier on everyone, it’s best for parents to talk about finances with their children years ahead of time, when everyone can think clearly and is more relaxed.
While there is indeed a lot of ground to cover, here are 10 must-ask questions that need to be answered.
Have they named a durable power of attorney to manage their finances?
The first step is to find out if they have named a Durable Power of Attorney (POA). Without a POA in place, you’ll have to go to court to get guardianship of your parents in order to access accounts on their behalf.
Where do they keep their financial records?
Whether they keep their money and documents in a bank, a safe or under the mattress, you need to know where to find records when you need them. Also, find out the location of keys or codes to lock boxes or safes.
What are their bank account numbers and names of their financial institutions?
In addition to knowing where they keep their money, you need specifics on all account numbers. What banks and mortgage company do they use? Do they have an investment firm? How many credit card accounts do they have and where do they keep their statements?
What are your parents’ monthly expenses?
Gather information on their mortgage, car payment, credit card debt, electric bills and other expenses.
How do they pay their bills?
If there are automatic deductions being taken out of a checking account, you need to know about them. Do they use online banking/bill pay or only paper checks?
How much is their annual income and where does it come from?
Do your parents receive monthly pension checks? Do they have dividends coming in from investments? Do they get money for a disability or alimony?
Do they receive Medicare, Medicaid or Social Security?
If your parents have become incapacitated, you may have to investigate the status and eligibility of government assistance.
What kind of medical health insurance do they have in addition to Medicare?
Do they have health insurance provided by an employer? If they are retired, are health benefits included as part of a pension?
Do they have long-term care insurance?
A “regular” health insurance plan does not cover the cost of assisted living or a nursing home. Did they purchase a long-term care insurance policy to cover the cost of those residences? If not, and they can no longer live on their own, what can they afford in terms of housing?
Do they have an accountant or financial planner?
Who is it and how do you contact them? Have they done any estate planning? Ask if you can meet with their financial professional with them to discuss their situations.
It’s best for parents and children to figure things out about money and plan for the future as soon as they can. All too often it’s too late, and trying to discuss money in a stressful time leads to more stress, arguments, saying things you regret, hurt feelings and broken relationships. Have the money talk now, before it’s too late.
Phyllis Krantzman knows what she should do, but like many of her peers, the 71-year-old doesn’t know how to approach a casual acquaintance to ask who will take care of her when she needs it most.
Krantzman, of Austin, Texas, is among a growing number of seniors who find themselves alone just when aging and end-of-life care becomes real.
Unmarried, with no children, her younger sister, by seven years, died in 2014. Krantzman’s social network is limited to a handful of work colleagues and a few acquaintances.
“I’m very fearful of when I reach that place in my life when I really need help and maybe can’t take care of myself anymore,” she said. “I have nobody to turn to.”
Krantzman represents a universe that’s come to be known among geriatric specialists as “elder orphans” — seniors with no relatives to help them deal with physical and mental health challenges. Their rising numbers prompted the American Geriatrics Society this week to unveil guidelines for a segment of these older adults who can no longer make their own medical decisions and have no designated surrogates. The nonprofit dubbed them “unbefriended” and called for a national effort to help prevent a surge among incapacitated seniors who don’t have a decision maker and face a health crisis.
Single seniors have always existed, but demographic and social changes have slowly transformed aging America. In 1900, average life expectancy was 47. Now, the combination of increased longevity, the large and graying baby boom generation, the decline in marriage, the rise in divorce, increased childlessness and family mobility has upended the traditional caregiving support system.
Among the indicators:
— A Centers for Disease Control and Prevention report this year shows the number of Americans older than 100 years old increased almost 44 percent between 2000 to 2014.
— Twenty-two percent of people over age 65 are — or risk becoming — elder orphans, according to a 2015 study by New York geriatrician Maria Torroella Carney.
— A U.S. Census report from 2014 projected by 2050 the 65 and older population to be 83.7 million — almost double the 2012 estimate of 43.1 million.
— The nonprofit Population Reference Bureau in Washington, D.C., reported earlier this year that family provides more than 95 percent of informal care for older adults who aren’t in nursing homes.
“Americans are spending less time than ever in the married state,” said Susan Brown of the National Center for Family & Marriage Research at Bowling Green State University in Ohio, which “raises questions about who’s going to care for these people as they age and experience health declines.”
Reference Bureau demographer Mark Mather said the combination of aging boomers and family dislocation is creating “a potential caregiving crisis or at least major challenges down the road.”
The oldest boomers are now 70. With more on the horizon, the impact of smaller family size will become more pronounced: Baby boomers had fewer children than previous generations and significant numbers are childless, said demographer Jonathan Vespa, of the U.S. Census.
“As people have fewer children, there are fewer people in that next generation to help take care of that older generation,” he said.
New 2015 U.S. Census data also reflects more elders who live alone — 42.8 percent of those 65 and older. Yet new twists have emerged, such as cohousing, in which people live independently in housing clusters with a common building for meals and socializing. Such thinking, said gerontologist Jan Mutchler, of the University of Massachusetts Gerontology Institute in Boston, suggests a “shift [in] the way people are thinking about who can I rely on and who’s going to be there for me.”
Katie McGrail, 77, spent much of her working life in San Antonio or New York, finally retiring to Texas five years ago. McGrail and her friends daydream about “having these little houses around the spoke of a wheel and at center have a nurse and a good cook.”
Mary Gleason, 85, is an unmarried only child with no children. She’s lived on St. Thomas in the Virgin Islands for 51 years, where she developed a close group of “extremely supportive friends.” Most, she said, are five to 15 years younger, which proved important in January when Gleason had open heart surgery.
“That was it,” she said, noting she never talked about future care. “Now that I’m feeling so much better, I try to keep away from discussing that kind of stuff.”
It’s a mindset Mutchler knows well.
“People in general avoid planning for unpleasant things,” she said. “A lot of people don’t have wills or think about long-term care or what they would do if they needed it.”
Timothy Farrell, a physician and associate professor at the University of Utah School of Medicine in Salt Lake City who worked on the new policies, said he would “regularly encounter patients with no clear surrogate decision maker.”
The guidelines include “identifying ‘non-traditional’ surrogates — such as close friends, neighbors, or others who know a person well.”
Boosting social ties among elders is part of a national campaign launched last week by the AARP Foundation and the National Association of Area Agencies on Aging, a nonprofit. The aim is to combat loneliness.
Krantzman says insomnia, which has plagued her for decades, has deepened her isolation.
“I had to give up having close friends and that is one of the reasons why I find myself so alone,” she said.
Although she works part-time and lives in a government complex for low-income seniors, Krantzman said the computer she bought at age 62 has expanded her reach to connect with others.
“The computer is so important to me because I have so few people in my life,” she said. “Having the computer thoroughly altered my entire life.”
Five years ago, Dr. Ira Kirschenbaum, an orthopedic surgeon in the Bronx who replaces more than 200 knees each year, would have considered it crazy to send a patient home the same day as a knee replacement operation.
And yet there he was this year, as the patient, home after a few hours. A physician friend pierced his skin at 8 a.m. at a Seattle-area surgery center. By lunch, Kirschenbaum was resting at his friend’s home, with no pain and a new knee.
“I’m amazed at how well I’m doing,” Kirschenbaum, 59, said recently in a phone interview, nine weeks after the operation.
What felt to Kirschenbaum like a bold experiment may soon become far more standard. Medicare, which spends several billions of dollars a year on knee replacements for its beneficiaries — generally Americans 65 and over — is contemplating whether it will help pay for knee replacement surgeries outside the hospital, either in free-standing surgery centers or outpatient facilities.
The issue is sowing deep discord in the medical world, and the debate is as much about money as medicine. Some physicians are concerned that moving the surgeries out of hospitals will land vulnerable patients in the emergency room with uncontrolled pain, blood clots or other complications.
But proponents of the change say it can give patients more choice and potentially better care, as well as save Medicare hundreds of millions of dollars. Already, an “overwhelming majority” of commenters said they want to allow the surgeries out of hospitals, according to recent rule-making documents.
The final decision, which could come within a year, would also act as a test of sorts for Donald Trump and his new administration. They will weigh whether to limit government controls, as Trump has often suggested, or to bend to pressure from hospitals and doctors, many of whom oppose the change.
“I think the question will come down to two things,” said David Muhlestein, senior director for research at Leavitt Partners, a leading health consulting firm. “It’s the balance of trying to reduce regulations and let the market function — and the competing interest of vested parties.”
Demand for total knee replacements is growing — 660,000 are performed each year in the United States. That number is likely to jump to two million annually by 2030, making this complex and expensive operation one of surgery’s biggest potential growth markets.
Even if the policy change is made, Medicare would still pay for patients to get traditional inpatient surgery. But with the agency also paying for the bulk of outpatient procedures, there would be a huge shift in money — out of hospitals and into surgery centers. Medicare could save hundreds of millions of dollars if it no longer needed to pay for multiple-day stays at the hospital. Investors at the outpatient centers could profit greatly, as could some surgeons, because doctors often have an ownership stake in the outpatient centers where they operate.
Whether the shift is beneficial for patients remains an open question. Medicare patients tend to spend nearly three days in a hospital, data shows. Forty percent of Medicare patients also spend time in a rehabilitation facility for further recovery. The data, which reflects knee replacement operations from 2014, suggests that Medicare patients are taking advantage of the post-operation support at hospitals and aftercare centers. Given that, it is unclear the percentage of eligible patients who would choose outpatient care.
But improvements in surgery — from new medicines to control bleeding to better pain management techniques — mean that, for some patients, the days of close medical supervision are no longer necessary.
Kirschenbaum, who is in favor of the change, acknowledged that outpatient surgery would be the right move for only a small subset of his Medicare patients — perhaps 10 to 15 percent — who have good caretaking at home and few chronic health issues. But it would not be for the people who are frail, live alone or in a dwelling with stairs, he said. The decision about whether an outpatient surgery should be done instead of an inpatient one tends to be made by the physician and patient.
“We want to make sure patients — when they go home, they’re safe, no question,” said Kirschenbaum, the chairman of orthopedics at Bronx-Lebanon Hospital Center and a founder of SwiftPath, a company that offers technical support to outpatient joint replacement centers.
Perhaps of equal concern to patients are the financial consequences, because even though less care is given, outpatient procedures require higher out-of-pocket costs for patients. Medicare covers inpatient hospital stays, aside from a $1,288 deductible. While Medicare rules stipulate that the outpatient would pay no more than this amount for the procedure itself, he could face additional fees for items like medicines, and Medicare would not cover aftercare at a skilled nursing facility.
The battle lines over outpatient knee replacements began forming in 2012, when Medicare first considered removing the surgeries from its “inpatient only” list of invasive and complicated medical procedures. Many orthopedic doctors and hospitals rose up in protest, calling the proposal “ludicrous” and “dangerous” and prompting Medicare to abandon the idea.
Dr. Charles Moon, who has performed knee replacement surgeries at Cedars-Sinai Medical Center in Los Angeles, fired off a letter at the time saying that knee replacement patients stayed at his hospital for 2.5 days on average, and that that was “considered borderline safe” given the need to monitor patients’ response to clot-busting medications.
Other objectors cited research showing that patients who received knee replacements as outpatients were twice as likely to die shortly afterward, and that even one-day-stay hospital patients were twice as likely to need a follow-up surgery, compared with those who remained inpatients longer.
“While we realize this can be good for some patients, it’s not for all patients and all locations,” said Dr. Thomas C. Barber, the chairman for the American Academy of Orthopaedic Surgeons’ advocacy council.
Yet the proposal has gained renewed momentum, backed aggressively by some surgeons and surgery center investors who say that their accumulating experience justifies the change. In recent months, Medicare has signaled a strong interest in outpatient knee replacements, noting the potential for “overall improved outcomes” as well as the potential savings for the government program.
The final decision is made by Medicare officials in the annual course of proposing changes, seeking public input and announcing a final rule. If Medicare does decide to make a change, it would probably not be put into effect until a year or so later.
In an interview, Thomas Wilson, the chief executive of the for-profit Monterey Peninsula Surgery Centers, an outpatient clinic, said his doctors have replaced knees of hundreds of adults — 59 years old on average, but up to 82 — with low complication rates and sky-high satisfaction rates. He said advances in surgical technique, anesthetics and patient education make it possible.
Presented with such evidence, a panel that recommends hospital outpatient payment policies to Medicare officials unanimously recommended in August that Medicare remove the procedure from the “inpatient only” payment list.
Wilson said that as a first step, doctors should use strict criteria for choosing which patients are good candidates, like a low to moderate body mass index and a healthy heart and lungs.
Patients who meet the criteria are teamed with a friend or family member who works as a coach. The patient and coach attend an educational session before the operation, and the coach is also there to help after.
The patient is typically discharged after 23 hours in the outpatient center, and a home health service or private nurse follows up. Patients also go on to physical therapy.
“Our mix is like our regular mix of patients,” said Wilson, whose center advertises a knee replacement surgery for $17,030. “It’s not what we call unicorns, not 49-year-old marathon runners. These are average folks who need to have a knee or hip replaced and they’re generally not sick.”
But Barber and others worry that moving the procedure outside the hospital could become a norm or an expectation, even though some patients, especially those with complicating conditions like diabetes and heart disease, need the added support of a hospital team. Patient safety could be compromised, they warned.
Kirschenbaum said undergoing surgery has changed the way he approaches patients. Now he can roll up his pant leg, show a scar and tell them: “You can do this, too.”
In the operating room, “with a knife in my hand, nothing has changed,” he said. “But what has changed is how we treat them before and after. The education, support and being available — it’s very important.”
This story has been corrected. An earlier version of this article misstated Medicare’s policy on certain outpatient surgeries. For surgeries that can be done either as an inpatient or an outpatient, outpatients can be charged no more than the inpatient deductible for the procedure itself; the usual 20 percent outpatient copay doesn’t apply.
At age 88, Elizabeth Fee looked pregnant, her belly swollen after days of intestinal ailments and nausea. A nurse heard a scream from Fee’s room in a nursing home, and found her retching “like a faucet” before she passed out.
The facility where she died in 2012 was affiliated with a respected San Francisco hospital, California Pacific Medical Center, and shared its name. Fee had just undergone hip surgery at the hospital, and her family, pleased with her care, said they chose the nursing home with the hospital’s encouragement.
Laura Rees, Fee’s elder daughter, said she was never told that the nursing home had received Medicare’s worst rating for quality — one star. Nor, she said, was she told that state inspectors had repeatedly cited the facility for substandard care, including delayed responses to calls for aid, disrespectful behavior toward patients and displaying insufficient interest in patients’ pain.
“They handed me a piece of paper with a list of the different facilities on it, and theirs were at top of the page,” Rees said in an interview. “They kept pointing to their facility, and I was relying on their expertise and, of course, the reputation of the hospital.”
Fee had an obstructed bowel, and state investigators faulted the home for several lapses in her care related to her death, including giving her inappropriate medications. In court papers defending a lawsuit by Fee’s family, the medical center said the nursing home’s care was diligent. The center declined to discuss the case for this story.
The selection of a nursing home can be critical: 39 percent of facilities have been cited by health inspectors over the past three years for harming a patient or operating in such a way that injuries are likely, government records show.
Yet many case managers at hospitals do not share objective information or their own knowledge about nursing home quality. Some even push their own facilities over comparable or better alternatives.
“Generally hospitals don’t tell patients or their families much about any kind of patterns of neglect or abuse,” said Michael Connors, who works at California Advocates for Nursing Home Reform, a nonprofit in San Francisco. “Even the worst nursing homes are nearly full because hospitals keep sending patients to them.”
Hospitals say their recalcitrance is due to fear about violating a government decree that hospitals may not “specify or otherwise limit” a patient’s choice of facilities. But that rule does not prohibit hospitals from sharing information about quality, and a handful of health systems, such as Partners HealthCare in Massachusetts, have created networks of preferred, higher-quality nursing homes while still giving patients all alternatives.
Such efforts to help patients are rare, said Vincent Mor, a professor of health services, policy and practice at the Brown University School of Public Health in Providence, R.I. He said that when his researchers visited 16 hospitals around the country last year, they found that only four gave any quality information to patients selecting a nursing home.
“They’re giving them a laminated piece of paper” with the names of nearby nursing facilities, Mor said. For quality information, he said, “they will say, ‘Well, maybe you can go to a website,’” such as Nursing Home Compare, where Medicare publishes its quality assessments.
The federal government may change this hands-off approach by requiring hospitals to provide guidance and quality data to patients while still respecting a patient’s preferences. The rule would apply to information not only about nursing homes but also about home health agencies, rehabilitation hospitals and other facilities and services that patients may need after a hospital stay.
“It has a substantial opportunity to make a difference for patients,” said Nancy Foster, a vice president at the American Hospital Association.
Even the worst nursing homes are nearly full because hospitals keep sending patients to them.
But the rule does not spell out what information the hospitals must share, and it has yet to be finalized — more than a year after Medicare proposed it. The rule faces resistance in Congress: The chairman of the House Freedom Caucus, Rep. Mark Meadows, R-N.C., has included it on a list of regulations Republicans should block early next year.
The government has created other incentives for hospitals to make sure their patient placements are good. For instance, Medicare cuts payments to hospitals when too many discharged patients return within a month.
“Hospitals didn’t use to care that much,” said David Grabowski, a professor of health care policy at Harvard Medical School. “They just wanted to get patients out. Now there’s a whole set of payment systems that reward hospitals for good discharges.”
But sometimes hospitals go too far in pushing patients toward their own nursing homes. In 2013, for instance, regulators faulted a Wisconsin hospital for not disclosing its ties when it referred patients to its own nursing home, which Medicare rated below average. In 2014, a family member told inspectors that a Massachusetts hospital had “steered and railroaded” her into sending a relative to a nursing home owned by the same health system.
Researchers have found that hospital-owned homes are often superior to independent ones. Still, a third of nursing homes owned by hospitals in cities with multiple facilities had lower federal quality ratings than at least one competitor, according to a Kaiser Health News analysis.
The Lowest Rating
Medicare’s Nursing Home Compare gave the nursing home where Elizabeth Fee died one star out of five, meaning it was rated “much below average.” The hospital’s case managers told Fee’s family that the nursing home was merely an extension of the hospital and that “my mother would receive the same excellent quality of care and attention,” said Rees, her daughter.
But state inspectors found shortcomings in seven visits to the nursing home between August 2009 and October 2011, records show. Inspectors found expired medications during two visits and, at another, observed a nurse washing only her fingertips after putting an IV in a patient with a communicable infection.
Just four months before Fee arrived, inspectors cited the nursing home for not treating patients with dignity and respect and for failing to provide the best care. One patient told inspectors that her pain was so excruciating that she couldn’t sleep but that nurses and the doctor did not check to see whether her pain medications were working.
“Nobody listens to me,” the patient said. “I was born Catholic, and I know it’s not right to ask to die, but I want to die just to get rid of the pain.”
Fee ate little and had few bowel movements, according to the state health investigation. Fee’s family had hired a private nurse, Angela Cullen, to sit with her. Cullen became increasingly worried about Fee’s distended belly, according to Cullen’s affidavit taken as part of the lawsuit. She said her concerns were brushed off, with one nurse declining to check Fee’s abdomen by saying, “I do not have a stethoscope.”
On the morning of her death, an X-ray indicated Fee might have a bowel obstruction or other problem expelling stool, the inspectors’ report said. That evening, after throwing up a large quantity of matter that smelled of feces, she lost consciousness. She died of too much fluid and inhaled fecal matter in her lungs, the report said.
Bills Of More Than $150,000
In a court ruling, Judge Ernest Goldsmith of the San Francisco Superior Court wrote that Elizabeth Fee’s younger daughter, Nancy, “observed her mother drown in what appeared to be her own excrement.” Kathryn Meadows, the family’s attorney, said in a court filing that the nursing home’s bills exceeded $150,000 for the three-week stay.
Sutter Health, the nonprofit that owns the medical center and the nursing home, emphasized in court papers that Elizabeth Fee arrived at the facility with a low count of platelets that clot blood. Sutter’s expert witness argued that the near-daily visits from a physician that Fee received “far exceeds” what is expected in nursing home care.
The physician and his medical group have settled their part of the case and declined to comment or discuss the terms; the case against Sutter is pending. California’s public health department fined Sutter $2,000 for the violations, including for delaying 16 hours in telling the physician about Fee’s nausea, vomiting and swollen abdomen. Last year, Sutter closed the nursing home.
A week or so after Fee died, a letter addressed to her from California Pacific Medical Center arrived at her house. It read: “We would appreciate hearing about your level of satisfaction with the care you received on our Skilled Nursing Rehabilitation Unit, the unit from which you were just discharged.”
As President Donald Trump and Republicans in Congress devise a plan to replace the 2010 health law, new research suggests a key component of the law helped people with chronic disease get access to health care — though, the paper notes, it still fell short in meeting their medical needs.
Research published Monday in the Annals of Internal Medicine found that the number of chronically ill Americans with insurance increased by about 5 percentage points — around 4 million people — in 2014, the first year the law required Americans to have coverage, set up marketplaces for people to buy coverage and allowed for states to expand eligibility for Medicaid, the federal-state insurance plan for low-income people. If states opted into the Medicaid expansion, people with chronic illnesses such as heart disease, diabetes, depression and asthma were more likely to see those gains.
Still, the study suggests, the law fell short in terms of guaranteeing those people could get medical treatment, see a doctor and afford medications.
The study is the first to examine how the health law affected people with these long-term diseases, which require careful and continuous management, and whose treatment drives a vast majority of the nation’s health care costs. If these people don’t get regular treatment they are especially likely to wind up needing emergency care.
“This homes in on the patients that are most dependent on having coverage and access,” said Danny McCormick, an associate professor at Harvard Medical School and senior author on the study. “Most chronic conditions require ongoing treatment. And if you don’t get it, often it results in more expensive care downstream.”
As the GOP crafts its replacement plan, those findings could indicate what elements of the law are worth keeping, and what needs to be addressed. The Medicaid expansion in particular has come under heightened scrutiny from the GOP. This past weekend, a senior aide to President Donald Trump also said the administration wants to turn controlof the program over to states, which experts say could result in less funding.
The researchers say their findings suggest reversing the Medicaid expansion would pose significant problems for people with long-term illness.
They used data from the Behavioral Risk Factor Surveillance System — an annual survey jointly run by state health departments and the Centers for Disease Control and Prevention — to examine records for more than 600,000 adults with at least one chronic condition. Diseases included coronary artery disease, stroke, asthma, pulmonary disease, diabetes, depression and arthritis. They compared insurance rates in the three years and examined whether people used that insurance to see a doctor.
“There’s a clear difference between what happened for [chronically ill] individuals in states, based on how states implemented Medicaid. The Medicaid expansion was one of the strongest parts of the law,” McCormick said.
If policymakers are serious about using health dollars more efficiently, and getting better health outcomes, he added, the findings support including such an expansion in any new policy platform.
The paper builds on research suggesting people generally were more likely to get insurance if they lived in states that expanded Medicaid. States such as West Virginia, Illinois and Kentucky — which opted into the expansion — saw double-digit gains in coverage of chronically ill people.
“Medicaid expansion is one of the tools you would think of to help people with chronic conditions – and we are seeing more evidence this is the case,” said Benjamin Sommers, an associate professor of health policy and economics at Harvard’s public health school, who was not involved with this study. “The question of whether this informs [the policy] debate — it clearly should. It clearly should be relevant.”
That said, Obamacare was hardly a panacea, the researchers argue. Even after the law’s insurance changes, about 15 percent of people with chronic disease didn’t have coverage. More than one in four didn’t have a check-up in 2014. About 23 percent of people with chronic disease still had to go without doctors’ visits because of factors like cost. And those gaps were more pronounced for blacks and Hispanics. They were more likely on average to remain uninsured even after the health law took effect and to face obstacles in using new health insurance if they had it.
The paper suggests some possible causes: People didn’t understand how to use their insurance, or they had plans that required them to pay out of pocket large copays or deductibles — flat spending fees consumers have to front before coverage kicks in. Many marketplace plans were categorized as “high-deductible plans.”
“You’ve got hypertension or diabetes, and you have a very low income. It’s really hard to take your medications” without coverage and minimal cost-sharing, McCormick said. “Someone who’s insulin dependent who doesn’t get insulin? it’s going to result in an emergency room visit, or a hospital visit. There’s a large potential for downstream complications.”
But those gaps in coverage and access to care probably got smaller in the years following 2014, Sommers suggested. Other research has shown that with time, more people got insurance and learned how to use it.
“This is likely the tip of the iceberg in terms of what the Affordable Care Act was doing,” Sommers said. “It’s useful and part of a larger body of evidence making it clear access to care has improved among a range of populations.”
But, he noted, the findings do emphasize an important issue: The health law by itself did not expand health care to all Americans, or even all Americans with chronic conditions.
“The Affordable Care Act is not a universal coverage law. It’s a huge expansion for coverage but still left 20 to 30 million uninsured,” he said. “Even for those with coverage, some are still experiencing challenges.”
Trump has not yet offered his plan but said universal coverage will be part of his health care plan — although aides have since walked back on that claim. Meanwhile, an analysis this month by the nonpartisan Congressional Budget Office suggested that the repeal plan offered last year by Republicans eventually would increase the uninsured population by as many as 32 million.
California officials have fined health care giant Kaiser Permanente $2.5 million for failing to turn over required data on patient care to the state’s Medicaid program.
The California Department of Health Care Services said this was the first fine imposed against one of its Medicaid managed care plans since at least 2000. The state relies on the data to help set rates, ensure adequate care is available and monitor how taxpayer dollars are being spent in the program, known as Medi-Cal in California.
Jennifer Kent, the department’s director, notified Kaiser of the sanctions in a Jan. 13 letterthat was obtained by California Healthline. The department later posted it online.
“This is the first time the department has sanctioned a health plan in recent history. The amount is significant,” said Sarah Brooks, deputy director of health care delivery systems at the Department of Health Care Services. “We do take it very seriously.”
Kaiser isn’t appealing the sanctions and the health plan said it’s “working toward compliance.” The company said the sanctions were in no way related to the quality of patient care or access to treatment. (Kaiser Health News, which produces California Healthline, is not affiliated with Kaiser Permanente.)
Brooks said her agency is in ongoing discussions with Kaiser and additional fines could be imposed depending on the company’s actions and whether Kaiser’s violations put the agency out of compliance with federal rules. That could force the state to repay money to the Centers for Medicare & Medicaid Services, which funds the Medi-Cal program jointly with the state.
Kaiser, the state’s dominant HMO, is among 22 health plans that participate in the Medi-Cal managed care program, which covers about 80 percent of Medi-Cal enrollees in the state.
The Oakland-based company failed to submit data on out-of-network care that Medi-Cal patients received from November 2014 to September 2016, according to the state. Kaiser also didn’t file data on “all physician-administered drugs” from March 2010 to March 2015, records show. That information is about infusions and other drugs given to patients in a doctor’s office or clinic.
The insurer missed a June 30 deadline to comply and a subsequent one Jan. 1, which triggered the current penalties. The fine related to medical claims was $742,500 and the drug data fine was $1.79 million, for a total of $2.5 million.
The reporting lapses are unusual since Kaiser pioneered use of electronic medical records and health data collection. But the company indicated in a statement that being an integrated health system that operates a health plan, its own hospitals and medical groups complicated matters.
Nathaniel Oubre, Kaiser Permanente’s vice president for Medi-Cal, said its systems and technology — including electronic health records — are focused on “quality, access and integration of care.”
But he said the systems were not designed or updated to collect information in the format required by the state.
“We are taking steps to change this,” he said. “We are making investments in technology that will facilitate compliance with the state’s data reporting requirements.”
Medi-Cal represents a small portion of Kaiser’s overall business, and some industry experts said the company may have been hesitant to alter its information technology systems to meet the state’s demands.
Kaiser said it serves about 700,000 Medi-Cal enrollees across the state. Rival Anthem Inc. serves more than 1 million Medi-Cal patients.
In Medi-Cal managed care, the state pays insurers a fixed amount per enrollee to provide comprehensive care. That’s different from the conventional fee-for-service system in which the state pays medical providers directly for services rendered.
In addition to being an insurer, Kaiser runs 38 hospitals across the country and hundreds of clinics. More than 18,000 salaried doctors work at its affiliated medical groups. Kaiser operates in eight states and the District of Columbia, but nearly 80 percent of its 10.6 million members are in California. For 2015, the company reported revenue of $60.7 billion and net income of $1.9 billion.
Kaiser has faced other stiff fines from California regulators. In 2013, the California Department of Managed Health Care fined the insurer $4 million for problems related to mental health treatment.
Two years later, the managed care agency criticized Kaiser again for failing to address the long delays in treatment for mental health patients.
Brooks said the state is rolling out a new ratings system for all Medi-Cal managed care plans next year that will track the quality of patient care, appeals processes, contract compliance and other performance measures.
We’re not going to shy away from talking about the issues that affect our lives: health insurance, medical costs, access to treatment, and the lack of support for caregivers. Every time we share articles about these things that we all deal with every day we get angry comments from people who aren’t active members of the community. We’re not going to be silenced by trolls.
Our goal is to support caregivers. Always. That includes asking politicians to support caregivers.
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There is no political party in America that is against healthcare or caregiving. Everyone wants their families to be taken care of. It’s human instinct to take care of the people we love.
The community on The Caregiver Space has members who’ve voted differently. It doesn’t matter. We all share the desire to see caregivers supported. We share the desire to support each other. Everyone on this site deserves your support.
No politician in America would look you in the eye and say what you do isn’t important. Everyone agrees that caregiving is vital to keep our families together and our economy functioning. Caregivers play an essential role in America — let’s get the support we need and deserve.
When Cindy Hunter received her Medicare card in the mail last spring, she said she “didn’t know a lot about Medicare.” She and her husband, retired teachers who live in a Philadelphia suburb, decided she didn’t need it because she shared his retiree health insurance, which covered her treatment for ovarian cancer.
“We were so thankful we had good insurance,” she said. So she sent back the card, telling officials she would keep Medicare Part A, which is free for most older or disabled Americans and covers hospitalization, some nursing home stays and home health care. But she turned down Part B, which covers doctor visits and other outpatient care and comes with a monthly premium charge. A new Medicare card arrived that says she only has Part A.
When Stan Withers left a job at a medical device company to become vice president of a small start-up near Sacramento, Calif., he took his health insurance with him. Under a federal law known as COBRA, he paid the full cost to continue his coverage from his previous employer. A few years earlier, when he turned 65, he signed up for Medicare’s Part A. With the addition of a COBRA plan, he thought he didn’t need Medicare Part B.
Hunter and Withers now know they were wrong and are stuck with medical bills their insurance won’t cover. Hunter called it “an honest mistake” and said there was nothing in the written materials she and her husband received indicating that if they had Medicare Part A, his retiree coverage could not replace Medicare Part B. Withers had no idea he made a bad choice.
Thousands of seniors unwittingly make similar mistakes every year, believing that because they have some type of health insurance, they don’t have to worry about signing up for Medicare Part B. Generally, insurance other than that provided by a current employer will not exempt them from Medicare’s strict enrollment requirements. Seniors’ advocates and some members of Congress want to fix the problem, backed by a broad, unlikely group of unions, health insurers, patient organizations, health care providers and even eight former Medicare administrators.
Medicare’s Part B enrollment rules haven’t changed since the program was created in 1965. Seniors can enroll only when they first become eligible — usually three months before and after the month they turn 65 — or when their job-based insurance ends. If they miss this opportunity, they have to wait until the months of January through March to enroll and then coverage only begins July 1. Most won’t be allowed to buy any other health insurance policy during that time.
And if they delay signing up for 12 or more months after becoming eligible, many will be hit with a permanent penalty added to their Part B monthly premium. In 2014, about 750,000 beneficiaries paid late penalties, raising their Part B premiums an average of 29 percent, according to the Congressional Research Service.
“The rules have not changed, but our lives have,” said Joe Baker, president of the Medicare Rights Center, an advocacy group that is leading the effort to update the enrollment process. When Medicare began, the government wanted seniors, especially younger and healthier people, to sign up quickly and so the deadlines and late penalties were incentives to get them in the program.
But these days more seniors work past the Medicare eligibility age, get health insurance through their employer or their spouse’s, or have coverage through the health insurance marketplaces, Baker said. The problem isn’t that people are going without insurance. “The confusion that we really see is with how Medicare interacts with other insurance coverage,” he said.
Hunter, 62, became eligible for Medicare earlier than 65 because she gets Social Security disability benefits. She’s receiving two chemotherapy drugs to control a second reoccurrence of ovarian cancer. This fall her oncologist’s office told her there’s “something going on with your insurance,” she recalled. After many calls to her husband’s retiree plan, Social Security, Medicare and even her congressman, she learned that her insurance would only pay a share of the bills for her cancer treatment after deducting the amount the insurer said was Medicare’s responsibility. “But Medicare isn’t paying because I don’t have Part B,” she said. So Hunter is probably responsible for that portion.
Withers thought the health plan he purchased through his old employer would count as job-based coverage, but COBRA is not a substitute for Medicare Part B, a point no one mentioned when he submitted his paperwork. He should have signed up for Part B when he left his previous job.
“How could there be a rule that no one knows about?” Withers asked.
In addition, the private plan has refused to pay thousands of dollars in medical bills because the company argued that he should have had Part B and those are Medicare’s responsibility.
Confusion over COBRA is just one of many reasons that people miss their opportunity to enroll in Part B. Others think, incorrectly, that getting Veterans Health Administration benefits, job-based health insurance from a company with less than 20 workers, retiree coverage from a formeremployer, or coverage from the health law’s insurance marketplace exempts them from Part B’s lifetime late penalties and waiting periods with no insurance.
To help seniors avoid such mistakes, bipartisan legislation has been introduced in both the House and Senate that would allow people who miss their initial Part B enrollment deadline to sign up in the fall, when millions of seniors already in Medicare are choosing private drug or medical policies. Part B coverage would begin the month after they enroll, said Stacy Sanders, federal policy director at the Medicare Rights Center. It would also allow most people who enroll late to apply for retroactive coverage to their initial eligibility date and request a waiver of the late penalties if they can prove they were misled by an employer, health plan, insurance broker or state official (currently, an exemption may be based only on misinformation from a federal government representative).
“Because I didn’t ask Social Security and they didn’t give me the wrong information, there was nothing they could do,” Hunter said. “They said if they had given me the wrong information, they might be able to do something.”
Seniors “shouldn’t face penalties or gaps in their Part B coverage simply due to bureaucratic snafu,” said Rep. Patrick Meehan, R-Pa., who co-sponsored the House bill. “I’ve had seniors contact my office and say they simply had no idea of existing deadlines — or that they faced penalties down the road for missing them.”
The legislation also would require Medicare officials to notify all Americans prior to their 65th birthday about signing up for Medicare. Currently, the federal government and some states notify only those 64-year-olds who have health insurance though the Affordable Care Act’s marketplaces.
Although the bill appears unlikely to see action before the end of the current congressional session, Meehan said he will reintroduce it in 2017.
Getting an official government notice before turning 65 explaining when to sign up for Part B would “absolutely” help, said Withers. “There should be something that tells people what they need to do.”
Doctors have complained for years that they’re not paid adequately for time-consuming work associated with managing care for seriously ill older patients: consulting with other specialists, talking to families and caregivers, interacting with pharmacists and more.
Under the new rules, physicians will be compensated for legwork involved in working in teams — including nurses, social workers and psychiatrists — to improve care for seniors with illnesses such as diabetes, heart failure and hypertension.
Care coordination for these “high need” patients will be rewarded, as will efforts to ensure that seniors receive effective treatments for conditions such as anxiety or depression.
Comprehensive evaluations of older adults with suspected cognitive impairment will get a lift from new payments tied to the standards that physicians now will be required to follow.
The new Medicare policies reflect heightened attention to the costliest patients in the health care system — mostly older adults who have multiple chronic conditions that put them at risk of disability, hospitalization, and an earlier-than-expected death. Altogether, 10 percent of patients account for 65 percent of the nation’s health spending.
It remains to be seen how many physicians will embrace the services that the government will now reimburse. Organizations that advocated for the new payment policies hope they’ll make primary care and geriatrics more attractive areas of practice in the years ahead.
Here’s a look at what is entailed:
Complex Chronic Care Management
Two years ago, Medicare began paying nurses, social workers and medical assistants to coordinate care for seniors with two or more serious chronic conditions. But low reimbursement and burdensome requirements discouraged most medical practices from taking this on.
New payments for “complex chronic care management” are more generous (an average $93.67 for the first hour, $47.01 for each half hour thereafter) and can be billed more often, making them more attractive.
They’ll cover services such as managing seniors’ transitions from the hospital back home or to a rehabilitation center, coordinating home-based services, connecting patients with resources, and educating caregivers about their conditions.
Many practices will be able to hire care managers with this new financial support, said Dr. Peter Hollmann, secretary of the American Geriatrics Society and chief medical officer of University Medicine, a medical group practice associated with Brown University’s medical school.
To illustrate the benefits, he tells of a recent patient, with diabetes, hypertension and heart failure who was retaining fluid and had poorly controlled blood sugar. After a care manager began calling the 72-year-old man every few days, asking if he was checking his blood sugar or gaining weight, Hoffmann adjusted doses of insulin and diuretics.
“The patient remained at home and he’s doing well, and we likely prevented a hospitalization,” Hoffmann said.
Cognitive Impairment Assessment
Making a dementia diagnosis is difficult, and primary care physicians often fail to do so on a timely basis. But new Medicare policies may help change that by specifying what cognitive examinations should entail and offering enhanced payments.
Physicians who conduct these evaluations are now expected to meet 10 requirements. In addition to performing a careful physical exam and taking a detailed history, they need to assess an older adult’s ability to perform activities of daily living, their safety, behavioral and neuropsychiatric symptoms, and caregivers’ knowledge, needs and abilities.
All the medications the senior is taking should be evaluated, and standardized tests used to assess cognition. Efforts to elicit the patient’s goals and values need to occur in the context of advance planning, and a care plan must be crafted and shared with caregivers.
Medicare will pay $238.30 for the initial assessment and additional fees for creating a care plan and performing care management.
“Hopefully, this will kick start the development of practices that provide these dementia-related services,” said Dr. Robert Zorowitz, senior medical director at OptumCare CarePlus, a managed Medicare long-term care program in New York City.
Care Between Patient Visits
Until now, the rule has been: if the doctor is with a patient, he can bill for his time. But if he takes home medical records to review at night or talks by phone with a caregiver who’s concerned about her elderly mother, that time goes unpaid.
That will change next year: Medicare will begin paying $113.41 for the first hour spent in these kind of activities and $54.55 for every subsequent half hour.
For the first time, “this recognizes the significant and valuable services that physicians perform in between face-to-face visits,” said Dr. Phillip Rodgers, co-chair of the public policy committee at the American Academy of Hospice and Palliative Medicine.
Physicians will also get extra reimbursement for extra time they spend in person with complex patients or their caregivers.
Dr. Paul Tatum, an associate professor of clinical family and community medicine at the University of Missouri School of Medicine recently scheduled a half hour for a patient in his mid-70s with high blood pressure, kidney disease, skin issues and cognitive impairment. But the visit ran to 90 minutes when it became clear the gentleman was more confused than ever, falling, not eating well, not taking medications, and needed more help.
“Much of what we did for this patient fits in the new Medicare codes, which recognize the extent of what’s needed to care for people with complex illnesses,” the doctor said.
Integrating Behavior Health
Research has shown the seniors with depression — a frequent complication of serious illness — benefit when primary care physicians collaborate with psychologists or psychiatrists and care managers track their progress.
Now, Medicare will begin paying $142.84 for the first 70 minutes that physicians and behavioral health providers work together, $126.33 for the next hour, and $66.04 per half hour for a care manager who stays in touch with patients and tracks whether they’re improving.
Care managers may work on site or off; psychologists and psychiatrists will be called for consultations, as needed.
“Accessing mental health services is a really big problem for my patients, and having professionals ready to work with me and compensated to do so will be extraordinarily valuable,” said Rodgers of the hospice and palliative medicine academy.
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visit khn.org/columnists to submit your requests or tips.
President Donald Trump’s administration made explicit this weekend its commitment to an old GOP strategy for managing Medicaid, the federal-state insurance plan that covers low-income people — turning control of the program to states and capping what the federal government spends on it each year.
It’s called “block granting.” Right now, Medicaid, which was expanded under the 2010 health law to insure more people, covers almost 75 million adults and children. Because it is an entitlement, everyone who qualifies is guaranteed coverage and states and the federal government combine funds to cover the costs. Conservatives have long argued the program would be more efficient if states got a lump sum from the federal government and then managed the program as they saw fit. But others say that would mean less funding for the program —eventually translating into greater challenges in getting care for low-income people.
Block granting Medicaid is a centerpiece of health proposals supported by House Speaker Paul Ryan and Rep. Tom Price, Trump’s nominee to run the Department of Health and Human Services. This weekend, Trump adviser Kellyanne Conway emphasized the strategy as key to the administration’s health policy.
But what would this look like, and why is it so controversial? Let’s break down how this policy could play out, and its implications — both for government spending and for accessing care.
Q: How would a block grant work?
So far, Trump hasn’t released details on his particular plan. But the basic idea is that states would get fixed federal grants that would be based on the state and federal Medicaid spending in that state. The grant would grow slightly each year to account for inflation. However, the inflation adjustments are expected to be less than the medical inflation rate.
Currently, states share the cost of Medicaid with the federal government. Poorer states pay less: In Mississippi, for instance, the federal government pays about three-fourths the cost of the program, compared to 50 percent in Massachusetts.
The federal funding is open-ended, but in return, states must cover certain services and people — for instance, children, pregnant women who meet income criteria and parents with dependent children. Under a block grant, states would have more freedom to decide who qualifies, and for what services.
How much freedom states will have will depend. Many proposals loosen state coverage requirements, which could mean that if states opted to cap enrollment, for example, people who are technically eligible might not get coverage, noted Edwin Park, vice president for health policy at the left-leaning Center for Budget and Policy Priorities in Washington, D.C.
“It’s going to be up to the specifics of any block grant proposal looking at legally, whether there would be certain benefits states would have to provide,” Park said. “Usually states are given unfettered flexibility, or near unfettered flexibility.”
Q: Is this the same thing as a “per capita cap”?
The block grant differs slightly from that other conservative favorite. Per capita caps have also been endorsed by Ryan. Under those, states also get a fixed amount of money each year, but that sum is calculated based on how many people are in the program. Since block grants aren’t based on individual enrollment each year, the state wouldn’t necessarily get more money to compensate if, say, more people qualified for Medicaid because of an economic downturn. In theory, a per capita caps system would increase funding. But if, say, an expensive new drug entered the market, or a costly new disease emerged, the Medicaid budgets still wouldn’t change to reflect that, Park noted.
Q: It seems like both Democrats and Republicans are pretty fired up about this. Why is this such a big deal?
The block grant system is a radical shift from how Medicaid has worked previously. Republicans say it could save the government billions of dollars. But other analysts note those savings could limit access to health care if the funding becomes squeezed. Thanks to the 2010 health law, which led states to expand Medicaid eligibility, more people would face the brunt of those cuts.
The fiscal impact: The non-partisan Congressional Budget Office estimates recent Republican block grant proposals could cut Medicaid spending by as much as a third over the next decade. The cuts would start small, growing larger over the years.
Many Republicans say that, because states will have greater flexibility, they can innovate with their Medicaid programs.
But opponents note that experimentation alone won’t make up for smaller budgets. The fixed grants could mean states cut benefits or force beneficiaries to take on more cost-sharing, for instance.
Some federal requirements are necessary, said Tom Miller, a resident fellow at the conservative American Enterprise Institute. Block granting could “be great or a disaster,” he said, depending on how it’s implemented. “The ideal model from the view of states is, ‘Give us the money, and I’ll let you know what I did.’ That’s not going to work,” he said.
The potential impact is significant. More than 10 million who got insurance through Obamacare are on Medicaid and could be affected. That’s also why some Republican governors — particularly in states that embraced the health law’s Medicaid expansion — have joined their Democrat peers in expressing qualms.
Q: You say this is an “old GOP idea.” How old?
This dates back at least until the 1980s. President Ronald Reagan pushed Medicaid block grants in 1981, House Speaker Newt Gingrich in 1995 and President George W. Bush in 2003.
Gingrich’s plan came closest — it passed through Congress but failed to garner approval from then-President Bill Clinton. He eventually consented to block grant welfare, resulting in the Temporary Assistance for Needy Families program.
Q: I don’t get my insurance through Medicaid. So why should I care?
Medicaid is a major government program. In 2015, it accounted for 17 percent of the nation’s health care expenditures — money that comes from taxpayer dollars.
Plus, the 75 million people covered make up almost a quarter of the U.S. population. And almost two-thirds of people in nursing homes pay for their care using Medicaid — indeed, most of the program’s spending is on the elderly and disabled. If lawmakers are trying to save $1 trillion over a decade, it’s hard to see how that could happen without touching elderly benefits, noted Matt Salo, executive director of the National Association of Medicaid Directors.
Even if you aren’t covered by Medicaid, you probably know someone who would be affected by block granting.
Revamping Medicaid could also affect what services hospitals provide, and their economic strength. Specifically, hospitals and clinics that treat large numbers of Medicaid beneficiaries may have to rethink their budgets, what services they can provide and how many people they can employ. That matters from a health care standpoint, but also a jobs one — hospitals are often large community employers.
Finally, the debate could also set the tone for how Congress treats other so-called “entitlement programs,” such as Medicare and Social Security. The CBO estimates that, barring any meaningful change, spending on Social Security and other health programs will account for about 16 percent of all the country’s yearly goods and services — the gross domestic product — by 2046. A successful change in Medicaid could pave the way for similar changes in other programs.
Q: What are the odds this actually happens?
Now that the GOP has control over Congress and the White House, Republicans have made health care a top priority, including provisions in the new budget to repeal Obamacare, for instance.
Large portions of a block grant proposal could be achieved through budgetary reconciliation, both Park and Miller said. That means it could pass without Democrat support, even in the Senate, since it would only require 51 votes.
But without more specifics, any assessment of the consequences is, at best, informed speculation.
“What does a block grant mean in terms of rules? … No one’s ever gotten far enough to say, ‘Here’s what this actually means,’” Salo said. “This is uncharted territory for a lot of us.”
KHN Senior Correspondent Mary Agnes Carey contributed to this article.
This story was updated to correct a reference to a CBO report on spending. CBO estimates that spending on Social Security and health programs will account for about 16 percent of the yearly U.S. gross domestic product by 2046, not 16 percent of federal spending.
It took a lot of convincing for John Evard to go to rehab. Seven days into his stay at the Las Vegas Recovery Center, the nausea and aching muscles of opioid withdrawal were finally beginning to fade.
“Any sweats?” a nurse asked him as she adjusted his blood pressure cuff. “Last night it was really bad, but not since I got up,” replied Evard, 70, explaining that he’d awakened several times with his sheets drenched.
Even for him, it was hard to understand how he ended up 300 miles away from his home in Scottsdale, Ariz., at this bucolic facility in the suburbs of Vegas. “This is the absolute first time I ever had anything close to addiction,” he said. He prefers to use the term “complex dependence” to describe his situation: “It was, shall we say, a big surprise when it happened to me.”
As the nation grapples with a devastating opioid epidemic, concerns have primarily focused on young people buying drugs on the street. But America’s elderly also have a problem. Over the past several decades, physicians have increasingly prescribed seniors pain medications to address chronic pain from arthritis, cancer, neurological diseases and other illnesses that become more common in later life.
A recent study found that in 2011, 15 percent of seniors were prescribed an opioid when they were discharged from the hospital; three months later, 42 percent were still taking the pain medicine.
One in three Americans who have taken prescription opioids for at least two months say they became addicted to or physically dependent on the medications, according to a recent Washington Post-Kaiser Family Foundation poll. (KHN is an editorially independent program of the foundation.)
It’s no surprise, then, that some seniors end up addicted.
Evard spent his life working as a corporate tax attorney. He’s spry and white haired, with a contagious grin. A few years ago he and his wife retired to Arizona with their eyes on the golf course. The dream didn’t last long. Just months later, a virus infected Evard’s left ear. Overnight, he lost half his hearing and was left with chronic pain. In January, he had surgery to fix the problem.
“From the surgeon’s standpoint, the operation was successful. The problem was, the pain didn’t go down. It went up,” he recalled.
His doctors prescribed opioids, including Oxycontin. “They decreased the pain, particularly at first,” said Evard. “As time went on they had less and less effect, and I had to take more and more.”
As the doctors increased his dosage, Evard’s once active life fell apart. He was confused, depressed, and still in pain. “I was effectively housebound. I couldn’t play golf anymore. I couldn’t go to social events with my friends or my wife.”
He couldn’t think of anything except the pills and when he could have the next one. He knew he was in trouble — despite having taken them exactly as his doctor instructed.
“I was a rule-follower,” he said. “And I still ended up, in a mess!”
In 2009, the American Geriatric Society came out strongly in favor of opioids, recommending that seniors with moderate to severe pain be considered for opioid therapy. The panel cited evidence that seniors were less likely than others to become addicted.
“You don’t see people in this age group stealing a car to get their next dose,” Dr. Bruce Ferrell, chairman of the panel that issued the Society’s guidelines, told The New York Times at the time.
Mel Pohl, medical director of the Las Vegas Recovery Center, called that conclusion a “horrible misconception.”
“There’s no factual, scientific basis for that. The drug takes over in the brain. It doesn’t matter how old the brain is.”
The problem is that chronic pain is common as people age, and there aren’t many good options to treat it. Even aspirin and ibuprofen carry bleeding risks. The 2009 AGS guidelines are no longer in use, but opioid medications remain a crucial tool to treat pain in older people. Most people are able to take opioids in small doses for short periods of time without a problem.
“We really don’t use opioids necessarily as the first line of treatment because we understand what the risks are. But we also don’t want to see our patients suffering needlessly if we can provide them with relief,” said Dr. Sharon Brangman, past president of the AGS. The trick, she said, is to try non-pharmacological options such as acupuncture first and to use the smallest effective opioid dose possible, if necessary.
Still, most of the seniors at the Las Vegas Recovery Center have taken the drugs as prescribed by a willing doctor trying to address their pain, said Pohl. That pattern sets them apart from many of the younger patients, many of whom start buying drugs on the black market after being turned away by physicians.
Nonetheless, in the past 20 years, the rate of hospitalization among seniors that is related to opioid overuse has quintupled. But relatively few of them end up in rehab. Pohl said that’s due to a combination of factors.
“They’ve grown up in an era where drug addiction and alcoholism [were] evil, and I think that’s internalized for some of the folks that I’ve seen,” he said, so they don’t seek help, particularly from an in-patient facility. Also, some rehabs not are equipped to deal with the complex medical problems common among older people.
Another problem are patients whose addictions have been misdiagnosed as dementia. “We’ll have a family come [visit], three weeks into treatment, and it’s like ‘Oh my God, you’re back! I haven’t seen that glimmer in your eye in 20 years!’” said Pohl.
It took John Evard about a week to get over the vomiting and flu-like symptoms of detox, which can be particularly hard on older patients. He’s speaking out now because he doesn’t want other seniors to fall into the same trap.
“Don’t just take the prescription because it’s part of the checkout process from the hospital,” he cautioned. “It’s your body, take charge of it, and push for alternatives at all costs. And if you do go on, get off them as fast as you can.”
Tai Boxley needs a hysterectomy. The 34-year-old single mother has uterine prolapse, a condition that occurs when the muscles and ligaments supporting the uterus weaken, causing severe pain, bleeding and urine leakage.
Boxley and her 13-year-old son have health insurance through her job as an administrative assistant in Tulsa, Okla. But the plan has a deductible of $5,000 apiece, and Boxley’s doctor said he won’t do the surgery until she prepays her share of the cost. His office estimates that will be as much as $2,500. Boxley is worried that the hospital may demand its cut as well before the surgery can be performed.
“I’m so angry,” Boxley said. “If I need medical care I should be able to get it without having to afford it up front.”
At many doctors’ offices and hospitals, a routine part of doing business these days is estimating patients’ out-of-pocket payments and trying to collect it up front. Eyeing retailers’ practice of keeping credit card information on file, “there’s certainly been a movement by health care providers to store some of this information and be able to access it with patients’ permission,” said Mark Rukavina, a principal at Community Health Advisors in Chestnut Hill, Mass., who works with hospitals on addressing financial barriers to care.
But there’s a big difference between handing over a credit card to cover a $20 copayment versus suddenly being confronted with a $2,000 charge to cover a deductible, an amount that might take months to pay off or exceed a patient’s credit limit. Doctors may refuse to dispense needed care before the payment is made, even as patient health hangs in the balance.
The strategy leaves patients financially vulnerable too. Once a charge is on a patient’s credit card, they may have trouble contesting a medical bill. Likewise, a service placed on a credit card represents a consumer’s commitment that the charge was justified, so nonpayment is more likely to harm a credit score.
Approximately three-quarters of health care and hospital systems ask for payment at the time services are provided, a practice known as “point-of-service collections,” estimated Richard Gundling, a senior vice president at the Healthcare Financial Management Association, an industry group. He could not say how many were doing so for higher priced services or for patients with high-deductible plans, situations that would likely result in out-of-pocket outlays of hundreds or thousands of dollars.
“For providers, there’s more risk with these higher deductibles, because the chance of being able to collect it later diminishes,” Gundling said.
But the practice leaves many patients resentful.
After arriving by ambulance at the emergency department, Susan Bradshaw lay on a gurney in her hospital gown with a surgical bonnet on her head, waiting to be wheeled into surgery to remove her appendix at a hospital near her home in Maitland, Fla. A woman in street clothes approached her. Identifying herself as the surgeon’s office manager she demanded that Bradshaw make her $1,400 insurance payment before the surgery could proceed.
“I said, ‘You have got to be kidding. I don’t even have a comb,’” Bradshaw, a 68-year-old exhibit designer, told the woman on that night eight years ago. “I don’t have a credit card on me.”
The woman crossed her arms and Bradshaw remembers her saying, “You have to figure it out.”
As providers aim to maximize their collections, many contract with companies that help doctors and hospitals secure payments up front, often providing scripts that prompt staff to talk with patients about their payment obligations and discuss payment scenarios as well as software that can estimate what a patient will owe.
But as hospitals and doctors push for point-of-service payments to reduce bad debt from patients with increasingly high deductibles, the risk is that patients will delay care and end up in the emergency room, Rukavina said. “Patients are essentially paying for their procedures up front,” he said. “It may not be a significant amount compared to their salary, but they don’t necessarily have it available at the time of service.”
The higher their deductible, the less likely patients are to pay what they owe, according to an analysis of 400,000 claims by the Advisory Board, a health care research and consulting firm. While more than two-thirds of patients with a deductible of less than $1,000 were likely to pay at least some portion of what they owe, just 36 percent of those with deductibles of more than $5,000 did so, the analysis found.
Fifty-one percent of workers with insurance through their employer had a deductible of at least $1,000 for single coverage this year, according to the Kaiser Family Foundation’s annual survey of employer health insurance. (KHN is an editorially independent program of the foundation.)
Boxley pays $110 a month for her family plan. She could not afford the premiums on plans with lower deductibles that her employer offered. She plans to talk with the doctor and hospital about setting up a payment plan so she can get the surgery in January.
“I’ll make payments,” Boxley said, although she acknowledged what she could pay monthly would be small. If that doesn’t pan out, she figures she’ll have to use student loan money she got for graduate school to cover what she owes.
Still, experts say that trying to pin patients down for payment in more acute settings, such as the emergency department, may cross a line.
Under the federal Emergency Medical Treatment and Labor Act (EMTALA), a patient who has a health emergency has to be stabilized and treated before any hospital personnel can discuss payment with them. If it’s not an emergency, however, those discussions can occur before treatment, said Dr. Vidor Friedman, an emergency physician who is the secretary-treasurer of American College of Emergency Physicians’ board of directors.
Bradshaw finally got her appendix removed by calling a friend, who read his MasterCard number over the phone. The surgery was uneventful and Bradshaw was home within 24 hours.
“It’s a very murky, unclear situation,” Friedman said of Bradshaw’s experience, noting that a case might be made that her condition wasn’t life threatening. “At the very least it’s poor form, and goes against the intent if not the actual wording of EMTALA.”
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When Dr. Christopher Callahan examines older patients, he often hears a similar refrain.
“I’m tired, doctor. It’s hard to get up and about. I’ve been feeling kind of down, but I know I’m getting old and I just have to live with it.”
This fatalistic stance relies on widely-held but mistaken assumptions about what constitutes “normal aging.”
In fact, fatigue, weakness and depression, among several other common concerns, aren’t to-be-expected consequences of growing older, said Callahan, director of the Center for Aging Research at Indiana University’s School of Medicine.
Instead, they’re a signal that something is wrong and a medical evaluation is in order.
“People have a perception, promulgated by our culture, that aging equals decline,” said Dr. Jeanne Wei, a geriatrician who directs the Donald W. Reynolds Institute on Aging at the University of Arkansas for Medical Sciences.
“That’s just wrong,” Wei said. Many older adults remain in good health for a long time and “we’re lucky to live in an age when many remedies are available.”
Of course, peoples’ bodies do change as they get on in years. But this is a gradual process. If you suddenly find your thinking is cloudy and your memory unreliable, if you’re overcome by dizziness and your balance is out of whack, if you find yourself tossing and turning at night and running urgently to the bathroom, don’t chalk it up to normal aging.
Go see your physician. The earlier you identify and deal with these problems, the better. Here are four common concerns that should spark attention — only a partial list of issues that can arise:
Fatigue. You have no energy. You’re tired all the time.
Don’t underestimate the impact: Chronically weary older adults are at risk of losing their independence and becoming socially isolated.
Nearly one-third of adults age 51 and older experience fatigue, according to a 2010 studyin the Journal of the American Geriatrics Society. (Other estimates are lower.) There are plenty of potential culprits. Medications for blood pressure, sleep problems, pain and gastrointestinal reflux can induce fatigue, as can infections, conditions such as arthritis, an underactive thyroid, poor nutrition and alcohol use.
All can be addressed, doctors say. Perhaps most important is ensuring that older adults remain physically active and don’t become sedentary.
“If someone comes into my office walking at a snail’s pace and tells me ‘I’m old; I’m just slowing down,’ I’m like no, that isn’t right,” said Dr. Lee Ann Lindquist, a professor of geriatrics at Northwestern University’s Feinberg School of Medicine in Chicago.
“You need to start moving around more, get physical therapy or occupational therapy and push yourself to do just a little bit more every day.”
Appetite loss. You don’t feel like eating and you’ve been losing weight.
This puts you at risk of developing nutritional deficiencies and frailty and raises the prospect of an earlier-than-expected death. Between 15 and 30 percent of older adultsare believed to have what’s known as the “anorexia of aging.”
Physical changes associated with aging — notably a reduced sense of vision, taste and smell, which make food attractive — can contribute. So can other conditions: decreased saliva production (a medication-induced problem that affects about one-third of older adults); constipation (affecting up to 40 percent of seniors); depression; social isolation (people don’t like to eat alone); dental problems; illnesses and infections; and medications (which can cause nausea or reduced taste and smell).
If you had a pretty good appetite before and that changed, pay attention, said Dr. Lucy Guerra, director of general internal medicine at the University of South Florida.
Treating dental problems and other conditions, adding spices to food, adjusting medications and sharing meals with others can all make a difference.
Depression. You’re sad, apathetic and irritable for weeks or months at a time.
Depression in later life has profound consequences, compounding the effects of chronic illnesses such as heart disease, leading to disability, affecting cognition and, in extreme cases, resulting in suicide.
A half century ago, it was believed “melancholia” was common in later life and that seniors naturally withdrew from the world as they understood their days were limited, Callahan explained. Now, it’s known this isn’t so. Researchers have shown that older adults tend to be happier than other age groups: only 15 percent have major depression or minor variants.
Late-life depression is typically associated with a serious illness such as diabetes, cancer, arthritis or stroke; deteriorating hearing or vision; and life changes such as retirement or the loss of a spouse. While grief is normal, sadness that doesn’t go away and that’s accompanied by apathy, withdrawal from social activities, disturbed sleep and self-neglect is not, Callahan said.
With treatments such as cognitive behavioral therapy and anti-depressants, 50 to 80 percent of seniors can expect to recover.
Weakness. You can’t rise easily from a chair, screw the top off a jar, or lift a can from the pantry shelf.
You may have sarcopenia — a notable loss of muscle mass and strength that affects about 10 percent of adults over the age of 60. If untreated, sarcopenia will affect your balance, mobility and stamina and raise the risk of falling, becoming frail and losing independence.
Age-related muscle atrophy, which begins when people reach their 40s and accelerates when they’re in their 70s, is part of the problem. Muscle strength declines even more rapidly — slipping about 15 percent per decade, starting at around age 50.
The solution: exercise, including resistance and strength training exercises and good nutrition, including getting adequate amounts of protein. Other causes of weakness can include inflammation, hormonal changes, infections and problems with the nervous system.
Watch for sudden changes. “If you’re not as strong as you were yesterday, that’s not right,” Wei said. Also, watch for weakness only on one side, especially if it’s accompanied by speech or vision changes.
Taking steps to address weakness doesn’t mean you’ll have the same strength and endurance as when you were in your 20s or 30s. But it may mean doctors catch a serious or preventable problem early on and forestall further decline.
We’re eager to hear from readers about questions you’d like answered, problems you’ve been having with your care and advice you need in dealing with the health care system. Visitkhn.org/columnists to submit your requests or tips.
Baby boomers are getting high in increasing numbers, reflecting growing acceptance of the drug as treatment for various medical conditions, according to a study published Monday in the journal Addiction.
The findings reveal overall use among the 50-and-older study group increased “significantly” from 2006 to 2013. Marijuana users peaked between ages 50 to 64, then declined among the 65-and-over crowd.
Men used marijuana more frequently than women, the study showed, but marital status and educational levels were not major factors in determining users.
The study by researchers at New York University School of Medicine suggests more data is needed about the long-term health impact of marijuana use among seniors. Study participants said they did not perceive the drug as dangerous, a sign of changing attitudes.
The study was based on 47,140 responses collected from the National Survey on Drug Use and Health.
Joseph Palamar, a professor at the NYU medical school and a co-author of the study, said the findings reinforce the need for research and a call for providers to screen the elderly for drug use.
“They shouldn’t just assume that someone is not a drug user because they’re older,” Palamar said.
Growing use of the drug among the 50-and-older crowd reflects the national trend toward pushing cannabis into mainstream culture. Over 22 million people used the drug in 2015, according to the Substance Abuse and Mental Health Services Administration. Eight states have legalized the drug for recreational use as well as medicinal use, according to Marijuana Policy Project, a non-profit advocacy group dedicated to enacting non-punitive marijuana policies across the United States. The drug has also proved to be a financial boon for state economies, generating over $19 million in September in Colorado.
Researchers also uncovered an increasing diversity in marijuana users. Past-year use doubled among married couples and those earning less than $20,000 per year.
More people living with medical conditions also sought out marijuana. The study showed the number of individuals living with two or more chronic conditions who used the drug over the past year more than doubled. Among those living with depression, the rate also doubled to 11.4 percent.
Palamar says the increase among the sick could be attributed to more individuals seeking to self-medicate. Historically, the plant was difficult to research due to the government crackdown on the substance. The Drug Enforcement Administration classifies the plant as a Schedule I substance, “defined as drugs with no currently accepted medical use and a high potential for abuse.”
Benjamin Han, assistant professor at the New York University School of Medicine and the study’s lead author, fears that marijuana used with prescription drugs could make the elderly more vulnerable to adverse health outcomes, particularly to falls and cognitive impairment.
“While there may be benefits to using marijuana such as chronic pain,” he said, “there may be risks that we don’t know about.”
The push and pull between state and federal governments has resulted in varying degrees of legality across the United States. Palamar says this variation places populations at risk of unknowingly breaking the law and getting arrested for drug possession. The issue poses one of the biggest public health concerns associated with marijuana, Palamar says.
But unlike the marijuana of their youth, seniors living in states that legalized marijuana for medicinal use now can access a drug that has been tested for quality and purity, said Paul Armentano deputy director of NORML, a non-profit group advocating for marijuana legalization. Additionally, the plant is prescribed to manage diseases that usually strike in older age, pointing to an increasing desire to take a medication that has less side effects than traditional prescription drugs.
The study found over half of the users picked up the habit before turning 18, and over 90 percent of them before age 36.
“We are coming to a point where state lawmakers are responding to the rapidly emerging consensus-both public consensus and a scientific consensus — that marijuana is not an agent that possesses risks that qualifies it as a legally prohibited substance,” he said.
Montana State Senator Ed Buttrey is a no-nonsense businessman from Great Falls. Like a lot of Republicans, he’s not a fan of the Affordable Care Act, nor its expansion of Medicaid, the health insurance for the poor and disabled.
“We didn’t want to implement a plan that was another entitlement that just had a bunch of people signing up to get free or cheap or subsidized health care,” Buttrey said. “We wanted a plan that said, ‘We’re going to get you on. We’re going to get you healthy. We’re going to identify your barriers to employment or better employment, and then we’re going to move you off the plan.’”
So Buttrey wrote a Medicaid expansion bill for Montana that linked the health coverage to a job training program. He wanted everyone getting benefits to have to meet with a labor specialist who would help them figure out how to get a job or to get a better paying job.
The goal is to “make them healthier, get them off social programs, get them off dependence on government, get them into higher wage jobs that have a future that possibly pay benefits. That’s a great benefit for the state,” he said.
But so far, federal officials said states can’t make participation in a work program mandatory for Medicaid recipients. Montana, instead, had to make its job training component voluntary.
Republican leaders across the country have long angled for more state control over Medicaid. The program’s funding comes from both states and the federal government, with the U.S. Department of Health and Human Services scrutinizing states’ use of the money. In Montana and many other states, the bulk of Medicaid funding comes from the federal government. HHS in a Trump administration may let states have more leeway — in fact, Seema Verma, Trump’s pick to run that division of HHS, advocated for more state control when she helped Indiana expand Medicaid. So the door could open to more Medicaid experiments like the one Buttrey has been pushing for.
The feds’ rejection of mandatory job training meant Buttrey was barely able to win enough votes in Montana’s Republican majority legislature to pass Medicaid expansion in 2015 last April. How’s it working?
“I think it’s a success story. I love this. I’m the poster child,” says Ruth McCafferty. She is a 53-year-old single mom from Kalispell, with three kids at home. She lost her job with a lending company last spring, and she had no idea there was a new job training program available when she signed up for Medicaid. She was just focused on finding a way to afford the drugs she needs to control her diabetes and asthma.
“One inhaler that I do is $647,” she says, bringing her medication costs to about $1,000 a month. “My plan was not to get them, only, like, a couple of them that were affordable, like $60, and the rest of them I was like, I guess I’ll just be called ‘Wheezy’ from now on!”
McCafferty instead got Medicaid, filled her prescriptions, and she got free online training to become a mortgage broker. The state even paid for her 400-mile roundtrip to Helena to take the certification exam. And now they’re paying part of her salary at a local business as part of an apprenticeship to make her easier to hire.
“It’s awesome!” she said.
Of the 53,000 Montanans who’ve signed up for expanded Medicaid, only about 3,000 have signed up for help getting a job. That’s in part because the federal government won’t allow states to use Medicaid money for it. To set it up here, Buttrey had to cobble together funding from other jobs programs and squeeze $1 million out of a reluctant state legislature.
Giving states the flexibility to tie their Medicaid programs to work requirements is an idea that’s likely to be popular with the new Congress and Trump administration. But health policy researcher Joan Alker, who runs the Center for Children and Families at Georgetown University, warns that it could backfire.
“I think it’s great and well worth doing to link people who might not be aware of existing job training programs or other kinds of work supports that can help them work. What I think is problematic is when this becomes a stick and not a support,” she said.
Alker said many people on Medicaid already have jobs, often low-paying ones that don’t offer health insurance, and they have little time for new training. In Montana, about two-thirds of those on Medicaid are already working. She said if people fail to meet a work requirement and then lose health benefits as a result, they’ll likely just get sicker and become less able to work.
Giving Medicare authority to negotiate drug prices is the best way to keep those spiraling costs under control for the program’s recipients, departing Health and Human Services Secretary Sylvia Burwell said Monday.
“Those drug costs are continuing to grow,” Burwell said at the National Press Club in Washington, D.C. The question, she said, is not whether Congress should give her department the necessary power, but rather “what is the alternative?”
Burwell largely devoted her remarks to defending the Affordable Care Act, the Obama administration health care law that is facing repeal by a Republican-controlled Congress and President-elect Donald Trump. HHS billed the speech as her last on the health law as the department’s secretary.
As she touted the ACA’s successes, Burwell acknowledged the law has fallen short in certain areas. In an exit memo released Friday, Burwell implored Congress to create a public option to increase competition in areas where few insurers offer plans. President Barack Obama also said last week he would have added that feature into the law if he could start over “from scratch.”
She rejected criticism that the ACA, often called Obamacare, is collapsing.
“Are there things that need to be improved? Are there places where more competition could help affordability? Yes. But the idea of disaster and collapse — those comments need to be examined.”
Burwell also dismissed the idea of repealing the law without a comprehensive replacement in place, saying a delay would bring chaos to individual insurance markets. Insurers would drop out or raise prices, and consumers would be unable to find or afford coverage.
She said any replacement plan must meet three requirements: cover as many or more people as the ACA does, maintain quality care and keep down health care costs. Republicans haven’t offered enough details to even evaluate a plan under those benchmarks, Burwell said.
“I don’t think most women think it’s a nitty-gritty detail whether their contraception is covered at no additional cost. I don’t think it’s a nitty-gritty detail whether or not your preexisting condition is covered,” she said. “That’s the level that the conversation needs to get to.”
Both benefits are required under the health law.
Republicans who are trying to repeal Obamacare and replace it with an alternative are looking for easy solutions to a complicated problem, and one faulty move could wreck the entire health care system, Burwell said.
She compared the health law to Jenga, a game where players take turns removing one wooden block at a time from a tower of 54 without making it topple. Republicans, she said, are looking for easy pieces to take out of the law. But less-popular provisions — such as the individual mandate requiring all Americans to purchase health insurance — are akin to an integral Jenga piece that props up the more popular parts, like banning insurance companies from discriminating against people with preexisting conditions.
Silver bullets don’t exist, she said.
“Instead, one of the most important things I’ve learned from implementing the Affordable Care Act is that if something sounds too good to be true, it usually is.”
The high prices Americans pay for generic drugs may have been cooked up by pharmaceutical salespeople on golf courses, at a New Jersey steakhouse or over martinis at a “Girls Nights Out” in Minnesota.
Details emerging from an ongoing investigation show that drug company employees gathered regularly at such swanky locations and conspired to keep prices and profits high, according to interviews and a complaint filed last week in U.S. District Court by Attorneys General in 20 states.
“The wining and the dining and the dinners and the social repertoire sort of led to an atmosphere in which follow up conversations could occur [and] where price fixing could occur … because they had these relationships,” said Minnesota Attorney General Lori Swanson in an interview. “I think people should be absolutely appalled.”
The lawsuit hits home for many middle-class families who have struggled in recent years to pay for generic medications while prices for some drugs soared more than 8,000 percent. The price for a decades-old antibiotic called doxycycline, for example, jumped from $20 for a bottle of 500 pills in October 2013 to more than $1,800 in April 2014.
That price hike was the result of secret efforts by generic drugmakers to make as much money as possible, the complaint says. Maine Attorney General Janet T. Mills said, “It is unconscionable for anyone to manipulate the system in order to line their pockets at the expense of people who need access to affordable medications in order to remain healthy.”
The ongoing Attorneys General investigation began in 2014, according to the complaint, and has “uncovered evidence of a broad, well-coordinated and long-running series of schemes.”
The companies accused of price fixing include Aurobindo Pharma USA, Citron Pharma, Heritage Pharmaceuticals, Mayne Pharma, Teva Pharmaceuticals USA and Mylan Pharmaceuticals, which has come under fire for an unrelated increase in the cost of its EpiPen, used for severe allergic reactions. The Justice Department also charged two former executives at Heritage with price fixing.
In addition to doxycycline, the companies and executives were charged with fixing the price of an oral diabetes drug called glyburide, which helps control blood sugar.
Spokeswomen for Teva and Mylan denied any wrongdoing. In a statement, Heritage said that it fired the two employees accused of price fixing in August and has filed a separate lawsuit against them, accusing them of embezzlement.
“We are fully cooperating with all aspects of the Department of Justice’s continuing investigation,” Heritage said. Aurobindo, Citron and Mayne did not respond to requests for interviews.
In an interview Friday, Connecticut Attorney General George Jepsen said, “The issues we’re investigating go way beyond the two drugs and the six companies. Way beyond … We’re learning new things every day.”
Generic drugs now account for 80 percent of prescriptions in the U.S., with sales of $74.5 billion in 2015. These drugs saved consumers $193 million in 2011 alone, because their prices are typically a fraction of the cost of brand-name drugs. Both consumers and taxpayers have been hurt by skyrocketing drug costs, according to the complaint. Medicaid plans spent more than $500 million from June 2013 to June 2014 on generic drugs whose prices more than doubled.
Generic drugmakers have explained recent price increases as the result of “a myriad of benign factors, such as industry consolidation, FDA-mandated plant closures or elimination of unprofitable generic drug product lines,” according to the complaint. In truth, the explanation for soaring prices is “much more straightforward and sinister — collusion among generic drug competitors,” the complaint said.
“It’s always suspicious when you see dramatic increases in price in areas where there’s really no market protection, either through patents or something else,” said Dana Goldman, director of the Schaeffer Center for Health Policy and Economics at the University of Southern California.
Executives from Heritage, a New Jersey company described as the “principal architect and ringleader of the conspiracies,” sought out competitors and got them to “agree to raise prices for a large number of generic drugs,” according to the complaint.
A Heritage saleswoman from Minnesota would allegedly organize the Girls Nights Out, Swanson said. The gatherings were sometimes called “women in the industry” meetings, as if the aspiring executives intended to mentor each other on the secrets to getting ahead in a man’s world.
But the cozy cocktail conversation veered far from career advice. Instead, the saleswomen shared sensitive information about their companies’ business plans, according to the complaint.
Male drug industry executives weren’t idle, either. In 2014, at least 13 male CEOs, company presidents and senior vice presidents allegedly met at a steakhouse in Bridgewater, N.J. At these “industry dinners,” one company typically paid for dinner for all of the guests. Executives decided which company would pay based on alphabetical order. Drug company representatives socialized at trade shows, golf outings and conferences, as well, the complaint said.
Executives discussed how to divvy up market share to avoiding competing with each other for business, according to the complaint. Companies either declined to bid for certain customers or offered “cover bids” that they knew would be rejected. Companies knew they were breaking the law and took care to have most of these discussions on cell phones or in person, to avoid leaving a paper trail. Employees destroyed evidence from text messages and emails, the complaint said.
Heritage and other companies routinely consulted their competitors before selling new medications so that they could avoid competing on prices, the complaint said. The agreement gave the illusion of competition, but kept prices high.
In 2014, for example, Heritage “devised a scheme whereby it would seek out its competitors” and arrange to “raise prices for a large number of generic drugs,” including glyburide, whose price was targeted for a 200 percent increase, according to the complaint. Executives instructed the Heritage sales team to immediately contact competitors to agree on price increases.
Heritage executives destroyed incriminating emails, knowing that the company didn’t have a policy about keeping copies of old messages, according to the complaint. Employees involved in the scheme “deleted all text messages from their company iPhones regarding their illegal communications with competitors.”
“In August 2016, following an internal investigation that revealed a variety of serious misconduct by the individuals charged today, Heritage Pharmaceuticals terminated them,” the statement from Heritage said. “We are deeply disappointed by the misconduct and are committed to ensuring it does not happen again.”
Minnesota’s Swanson noted that some information in the complaint has been blacked out at the request of government officials. Eventually, though, Swanson said she wants all of the allegations’ details made public.
“I’m committed to try to see this through and have an unredacted copy of this complaint eventually get filed so people can see just what’s in all of these text messages an emails and what was occurring,” said Swanson. “I think that’s important.”
The investigation has uncovered a hidden side of the generic pharmaceutical industry, said Michael Carrier, a professor at Rutgers Law School who specializes in antitrust law in the drug industry. “It’s a bombshell,” he said.
The charges should prevent generic drugmakers from dramatically raising prices in the near future, Carrier predicted.
“These sorts of charges can filter out over months if not years,” Carrier said. Based on the complaint, he said, “it’s not just two bad apples acting alone.”
The victims of the alleged price fixing include both consumers and taxpayers, who support government insurance programs, the complaint said.
“Many Mainers rely on lower-cost generic prescription drugs in order to make ends meet,” said Mills.
The price fixing charges have surprised even pharmaceutical industry experts.
“There are some economic experts who have suspected that there is some tacit collusion among brand-name drugmakers not to lower drug prices,” said Dr. Hagop M. Kantarjian, chair of the department of leukemia at the University of Texas MD Anderson Cancer Center, who has analyzed the strategies brand-name drugmakers use to keep their products out of the generic market. “But nobody has thought that possibly the generic companies could be potentially colluding to develop monopolistic prices.”
Kantarjian called for stiff penalties that drugmakers can’t write off as the cost of doing business. “If they’re guilty, they should be penalized in a deterrent fashion,” he said.
Goldman said drugs that have been used for years and cost pennies to make shouldn’t be regarded as ordinary consumer products.
“They should be thought of like electricity or something we all need,” Goldman said. “In electricity, we take the view that there is a safe and steady supply and we provide a fair return to the manufacturers.”
Sen. Bernie Sanders, I-Vt., and Rep. Elijah Cummings, D-Md., had asked Heritage for details about doxycycline’s price increase in 2014. In a letter to the company released Friday, they noted that Heritage never sent the information. When asked about the drug’s price increase, an attorney for Heritage told Cummings and Sanders that “Heritage has not seen any significant price increases” for doxycycline in the U.S.
In their new letter, Sanders and Cummings said Heritage’s 2014 statement now seems “disingenuous at best” and repeated their request for information about doxycycline’s sales and pricing.
The Affordable Care Act of course affected premiums and insurance purchasing. It guaranteed people with pre-existing conditions could buy health coverage and allowed children to stay on parents’ plans until age 26. But the roughly 2,000-page bill also included a host of other provisions that affect the health-related choices of nearly every American.
Some of these measures are evident every day. Some enjoy broad support, even though people often don’t always realize they spring from the statute.
In other words, the outcome of the repeal-and-replace debate could affect more than you might think, depending on exactly how the GOP congressional majority pursues its goal to do away with Obamacare.
No one knows how far the effort will reach, but here’s a sampling of sleeper provisions that could land on the cutting-room floor:
CALORIE COUNTS AT RESTAURANTS AND FAST FOOD CHAINS
Feeling hungry? The law tries to give you more information about what that burger or muffin will cost you in terms of calories, part of an effort to combat the ongoing obesity epidemic. Under the ACA, most restaurants and fast food chains with at least 20 stores must post calorie counts of their menu items. Several states, including New York, already had similar rules before the law. Although there was some pushback, the rule had industry support, possibly because posting calories was seen as less onerous than such things as taxes on sugary foods or beverages. The final rule went into effect in December after a one-year delay. One thing that is still unclear: Does simply seeing that a particular muffin has more than 400 calories cause consumers to choose carrot sticks instead? Results are mixed. One large meta-analysis done before the law went into effect didn’t show a significant reduction in calorie consumption, although the authors concluded that menu labeling is “a relatively low-cost education strategy that may lead consumers to purchase slightly fewer calories.”
PRIVACY PLEASE: WORKPLACE REQUIREMENTS FOR BREAST-FEEDING ROOMS
Breast feeding, but going back to work? The law requires employers to provide women break time to express milk for up to a year after giving birth and provide someplace — other than a bathroom — to do so in private. In addition, most health plans must offerbreastfeeding support and equipment, such as pumps, without a patient co-payment.
LIMITS ON SURPRISE MEDICAL COSTS FROM HOSPITAL EMERGENCY ROOM VISITS
If you find yourself in an emergency room, short on cash, uninsured or not sure if your insurance covers costs at that hospital, the law provides some limited assistance. If you are in a hospital that is not part of your insurer’s network, the Affordable Care Act requires all health plans to charge consumers the same co-payments or co-insurance for out-of-network emergency care as they do for hospitals within their networks. Still, the hospital could “balance bill” you for its costs — including ER care — that exceed what your insurer reimburses it.
If it’s a non-profit hospital — and about 78 percent of all hospitals are — the law requires it to post online a written financial assistance policy, spelling out whether it offers free or discounted care and the eligibility requirements for such programs. While not prescribing any particular set of eligibility requirements, the law requires hospitals to charge lower rates to patients who are eligible for their financial assistance programs. That’s compared with their gross charges, also known as chargemaster rates.
NONPROFIT HOSPITALS’ COMMUNITY HEALTH ASSESSMENTS
The health law also requires non-profit hospitals to justify the billions of dollars in tax exemptions they receive by demonstrating how they go about trying to improve the health of the community around them.
Every three years, these hospitals have to perform a community needs assessment for the area the hospital serves. They also have to develop — and update annually — strategies to meet these needs. The hospitals then must provide documentation as part of their annual reporting to the Internal Revenue Service. Failure to comply could leave them liable for a $50,000 penalty.
A WOMAN’S RIGHT TO CHOOSE … HER OB/GYN
Most insurance plans must allow women to seek care from an obstetrician/gynecologist without having to get a referral from a primary care physician. While the majority of states already had such protections in place, those laws did not apply to self-insured plans, which are often offered by large employers. The health law extended the rules to all new plans. Proponents say direct access makes it easier for women to seek not only reproductive health care, but also related screenings for such things as high blood pressure or cholesterol.
AND WHAT ABOUT THOSE THERAPY COVERAGE ASSURANCES FOR FAMILIES WHO HAVE KIDS WITH AUTISM?
Advocates for children with autism and people with degenerative diseases argued that many insurance plans did not provide care their families needed. That’s because insurers would cover rehabilitation to help people regain functions they had lost, such as walking again after a stroke, but not care needed to either gain functions patients never had, such speech therapy for a child who never learned how to talk, or to maintain a patient’s current level of function. The law requires plans to offer coverage for such treatments, dubbed habilitative care, as part of the essential health benefits in plans sold to individuals and small groups.
Abra and Matt Schultz, both 32, recently built a house in a middle-class neighborhood in Pottsville, Pa. Matt works as a carpenter foreman for a construction company. He and Abra, his wife, are right in Trump’s wheelhouse — Republicans in Republican Schuylkill County.
The couple spent December trying to decide whether to buy health insurance or skip it for 2017. They voted for Trump because they were fed up with how much they are paying for health insurance.
In mid-December in the couple’s kitchen, Abra was sizing up their health insurance options. She showed off a thick notebook, along with a file folder with policy documents and notes piled as high as a stack of pancakes. “Don’t touch my paperwork — don’t even try to touch it,” Abra joked to Matt. “I get so stressed out about it. I’ll not pick one until the very last minute, like that deadline day.”
Matt makes good money, but he usually gets laid off in the winter when construction slows down. For the past few years, he and Abra have bought coverage on Healthcare.gov, the Affordable Care Act exchange.
But they’re in a tough spot. They make too much money to get a subsidy to help them pay for insurance. Subsidies are available only to those who make under 400 percent of poverty, or about $97,000 for a family of four. But while the Schultzes don’t qualify for help, paying full price for health insurance stretches their budget to the limit.
Two years ago, when they first signed up for insurance on the exchange, they were paying $530 a month for a plan they liked, Abra says. The price rose a little for 2016, but the options for 2017 went up a lot — about 30 percent on average in Pennsylvania.
“We have one for $881, one for $938, one for $984, like the deductibles are — look, these are insane,” Abra said, as she checked the exchange website for monthly premiums. “The one that we would be stuck with would be the silver. This is $881.50, and our deductible would be $7,000.”
It’s frustrating, she said, because she and her husband are relatively healthy and haven’t needed that much care. Add to that the cost of a separate partially subsidized insurance policy for their two children, and the family is expecting to pay at least $14,000 in health premiums.
Abra resented the mandate to buy health insurance from the beginning. And she liked what Trump said about the Affordable Care Act on campaign stops, like one in King of Prussia in November, just before the election.
“Obamacare has to be replaced, and we will do it and we will do it very, very quickly,” Trump said in his speech. “It is a catastrophe.”
Abra said she wouldn’t mind being in health insurance limbo while Trump and lawmakers debate the future of Obamacare.
Larry Levitt, with the Kaiser Family Foundation, said he understands her frustration with the law. “These are people who are playing by the rules, and doing the right thing, and they feel like they’re getting the shaft,” he said. (KHN is an editorially independent program of the foundation.)
No one likes higher and higher premiums, he said, but there’s a trade-off. “Before the ACA, to get insurance on your own, you had to fill out a medical questionnaire, and an insurer would only take you if you were reasonably healthy,” Levitt said. “That kept premiums down, but it’s because sick people were excluded from the market altogether.”
Levitt said the law’s goal was to to get insurance to a point where premiums only increase slightly every year while everyone can still get coverage, no matter their pre-existing condition. And, he says, any replacement plan devised by Republicans will have upsides and downsides, just like the Affordable Care Act. “If this were easy, it already would have happened,” he said.
Abra said she understands the broader picture, but she needs to focus on what’s best for her family — affordable health insurance.
“[Trump] just wants to fix what needs to be fixed, which I think is wonderful news,” she said.
Abra did decide on a policy for her and her husband — she selected the plan that costs $938 a month because she wants to keep her current doctor. But if lawmakers eliminate the penalty for people who don’t get insurance, she might take a risk and drop the coverage.
Darlene Hawes lost her health insurance about a year after her husband died in 2012.
Hawes, 55, is from Charlotte, N.C. She ended up going without insurance for a few years, but in 2015 she bought coverage on HealthCare.gov, the Affordable Care Act marketplace, with the help of a big subsidy.
“I was born with heart trouble and I also had, in 2003, open-heart surgery,” she said. “I had breast-cancer surgery. I have a lot of medical conditions, so I needed insurance badly.”
After the results of the 2016 election, she was scared she’d lose her insurance immediately. For years, Republicans have vowed to scrap the health care law. The new Congress is working on a plan to undo the Affordable Care Act. But they have not settled on how to replace the health care structure that Obamacare created.
Hawes is one of about 550,000 North Carolinians who relies on the Obamacare marketplace for health insurance. She was relieved after she talked with an enrollment specialist last month who told her she can renew her policy for 2017.
“I’m like, ‘Oh my Lord, did she just say that?’” Hawes said with a laugh. “It’s just like a whole load of burdens just fell off of my back because all the years I haven’t been covered since my husband passed away — I don’t want to be sad again. I was very sad.”
Most health care researchers and policy analysts agree not much is likely to change in 2017.
“Even the Republican Congress in one of their most recent bills to repeal [the law] put in a two-year transition period, so that the premium subsidies and the other provisions of the law that are fundamental wouldn’t be repealed for a couple of years,” said Sabrina Corlette, a research professor at Georgetown University’s Health Policy Institute.
Some Republican leaders have said repeal should happen immediately with a transition period to come up with a replacement. Still, the CEO of HealthCare.gov, Kevin Counihan, said he can’t guarantee coverage will remain. “It’s not my place to promise anything about a new administration,” he said.
“But what I can tell you is not only are we moving forward, but our enrollment is higher than expected.” At the end of 2016, enrollment for 2017 plans spiked and as of the end of December, North Carolina had the third-highest enrollment for 2017 plans among states using HealthCare.gov.
Julieanne Taylor with Legal Services of Southern Piedmont is helping people sign up. She said about a third of them have asked about the election.
“But generally when we’re calling, people are really excited to have their appointment and come in and look at the plans for 2017,” she said. “I think they’re mostly interested in how much they’re going to be paying.”
In some ways, North Carolina is in tough shape. Premiums are going up and insurance companies have dropped out, leaving Blue Cross Blue Shield of North Carolina as the only insurer in 95 percent of the state.
Blue Cross actuary Brian Tajlili said it’s simply an expensive market that has older, sicker people who cost more to cover.
“There is continuing demand for services and continuing high utilization within this block of business,” he said.
What he calls “this block of business” means the customers who buy insurance on the exchange. It’s a small slice of the overall health insurance market, because most people are covered through work or Medicare. The overwhelming majority of consumers who buy coverage on the exchange get federal subsidies that greatly reduce what they pay.
Still, it’s been a turbulent market for consumers and insurers. Over the past two years, Blue Cross has lost $400 million in North Carolina on that part of its business.
Amid the post-election uncertainty, Tajlili said Blue Cross is committed to offering plans in 2017.
“2017 will be another pivotal year for us as we look at the individual market,” he said.
One of Blue Cross’ new customers will be Sara Kelly Jones, 46, who works at Letty’s restaurant in Charlotte, N.C. She recognizes Obamacare isn’t perfect. But before the law, health insurance was a financial vise that kept tightening on her.
“I could not afford it at all,” she said. “Every year it was going up $100 to $120, $150 a month. It got to the point where it was going to be at least $200 more a month than my mortgage.”
But under Obamacare, Jones qualifies for a subsidy. Her premium will go up with Blue Cross, but she said she can afford it with that help.
Jones said the political debate over the law ignores people like her.
“I’m terrified,” she said. She’s worried about the Republican Congress’ pledge to scrap and replace Obamacare without presenting a detailed proposal. “What on Earth are you going to do with all these people, myself included, that are counting on this?”
People who want to sign up for a policy on healthcare.gov after the annual open enrollment period ends Jan. 31 may have to produce a paper trail proving that they qualify for a “special enrollment period” before their coverage can begin, according to details of a pilot program described last week by federal officials. But the verification measures, long sought by insurance companies, may deter the very consumers the marketplace needs to attract: healthy people who may not bother signing up if doing so is a hassle.
The insurance needs of many of the shoppers who use the health marketplaces don’t fit neatly into the three-month annual open enrollment period. For example, nearly 30 million people — workers plus their families — lose employer-sponsored coverage every year outside of open enrollment, researchers at the Urban Institute found. But they estimated that only about 5 percent of those eligible for a special enrollment period signed up for marketplace coverage in 2015.
Everyone seems to agree that special enrollment periods are necessary to accommodate people who have major life changes such as the loss of job-based health insurance, birth of a child or divorce. But insurers maintain that customers have abused these periods, waiting to sign up until they’re sick and need pricey care.
A study commissioned by two insurance industry groups, America’s Health Insurance Plans and the Blue Cross Blue Shield Association, found that the monthly health insurance claims of individuals who enrolled in coverage under a special enrollment period in 2015 were 41 percent higher during the first three months of coverage than the claims of people who enrolled during regular open enrollment.
That’s not surprising, said Sarah Lueck, a senior policy analyst at the Center on Budget and Policy Priorities. Many consumers are not aware of the availability of special enrollment periods, and the people who are going to make signing up a priority when they lose their jobs or have another life change often are those who have health care needs.
“We reject the idea of widespread abuse [of special enrollment periods], and that the evidence of costs is evidence of abuse,” she said.
Until last February, the federal Centers for Medicare & Medicaid Services — which runs the federal marketplace used by three-quarters of the states — didn’t verify the eligibility of people signing up in a special enrollment period. In June, CMS began to require that people who signed up through the healthcare.gov website provide documentation for some of the most common special enrollment triggering events, including the loss of other insurance coverage, permanent relocation, marriage, birth or adoption. People could receive coverage while their documents were reviewed, however.
The pilot project described last week will tighten up documentation requirements still further. Starting next June, half of customers who apply for certain types of special enrollment periods on healthcare.gov will be required to submit documents verifying their eligibility before their coverage begins. (The specific enrollment categories that will be affected is unclear, except that the pilot will include applications based on the loss of other insurance coverage.) Individuals will have 30 days to submit their documents, after which the marketplace with forward their enrollment information to the insurer.
Neither AHIP nor the Blue Cross Blue Shield Association responded to a request for comment about the pilot program.
Policy analysts are concerned that the new requirements will discourage people, particularly healthy people, from applying. There is some evidence that this is already happening, they say. The fact sheet describing the upcoming pilot reported that sign-ups using special enrollment periods have dropped by 20 percent since the new verification process began in June compared with 2015. Particularly concerning is the finding that younger applicants were more likely to drop out of the verification process than older ones.
“We don’t know if the reason [for the decline] is that people are not eligible or that the process is now so onerous that they’re not completing it,” said Elizabeth Hagan, a senior policy analyst at Families USA, a consumer advocacy group.
Unlike the regular open enrollment process, in which the marketplace’s computer system electronically searches for the identification, income and other data necessary to determine eligibility for coverage, the pilot program puts the burden on the consumer to upload or mail in copies of relevant documents.
Stan Dorn, a senior fellow at the Urban Institute who authored the report on special enrollment periods, suggested that there are better ways to address the issue than requiring consumers to provide documentation. He said the existing electronic system through which doctors query insurers to confirm patients’ insurance coverage could provide the basis for healthcare.gov to confirm that applicants have lost their insurance and may be eligible for a special enrollment period.
“We have a lot of experience that eligible consumers faced with [documentation requirements] will drop out of the process,” Dorn said.
Dementia has been slowly stealing Ruth Perez’s memory and thinking ability for 20 years. Her daughter, Angela Bobo, recalled when it was clear that her mother was never going to be the same.
“She would put food together that didn’t belong together — hamburger and fish in a pot. Mom never cooked like that,” she said.
The mother and daughter live together in Yeadon, Pa., just outside of Philadelphia.
Perez is literally in the center of the family. She spends much of her day tucked under a fleece blanket on a recliner in the middle of the living room. The 87-year-old doesn’t seem to notice as her daughter and grown grandchildren come and go, but they keep up a steady one-sided conversation with her anyway.
“If I kiss her, she might lean towards me, and sometimes she’ll nod,” said Bobo. “What she can do, at times, is smile at you and say a word like, ‘uh huh.’”
Perez can’t lift her arms or move her legs.
A rotating crew of family members takes turns caring for her. They are experienced and they have routines and schedules, but a few months ago, the pressure of lying in one place created a small blister on Perez’s hip. The blister burst and that became a bedsore and wouldn’t heal.
“I couldn’t get it to go away,” Bobo said. “When I say we were at our wits’ end to fix this, we were beyond there.”
About 44 million Americans are unpaid family caregivers like Bobo — sometimes for a child with special needs, more often for a frail older adult, according to a 2015 estimatefrom the National Alliance for Caregiving. They are often women with a full-time job and children, though now 40 percent of caregivers are men, and millennials are becoming more involved in caring for someone at home, says John Schall, CEO of the Caregiver Action Network.
“In too many cases, people just learn this stuff by themselves and that’s really kind of dangerous,” Schall said.
That’s because many people don’t have the necessary skills. Thirty-three states have adopted legislation requiring medical centers to give caregivers basic training or instructions when a patient heads home from the hospital, though how this is carried out is largely up to the hospital.
Ken Everhart, a retired tech guy from North Carolina, became a caregiver for his wife, Genie, for just a few months 10 years ago, when the two were in their mid-50s.
“What we needed was for someone to sit me down in a class and say, ‘Here’s how you change the sheets while she’s still in the bed. Here’s how you take her blood pressure. Here’s how you monitor her breathing,’” Everhart said.
He worried he’d drop her as they struggled to get to the bathroom. He wasn’t sure when to call 911. That uncertainty weighed on Ken — especially when Genie was rushed back to the hospital three times.
“I had given her a straw to drink out of, and a sippy cup, and I went to make a phone call. I wasn’t gone five minutes and I came back in and she was choking,” he said. “I should have sat her up, and I should not have allowed her to have anything to drink while I wasn’t in there to watch. But I didn’t know that.”
Many families can’t afford to use trained caregivers. Hiring help at home for just a few hours a week can cost $10,000 to $15,000 a year.
“When patients leave the hospital, they generally leave quick and sick,” said Susan McAllister, medical director of quality in the Division of Hospital Medicine at Cooper University Health Care in Camden, N.J. Her team includes the social workers, home health nurses and others who help plan a patient’s discharge from the hospital.
McAllister said these days it’s common to come in with a heart attack, get medicine to open a blocked artery, and leave just 48 hours later. The short hospital stay isn’t a problem, she said, but the transition home has to be done right.
In October, Minnesota became the latest state to pass laws to prepare potential caregivers to know what the sick person may need. California, New Jersey, Oklahoma and New York also have versions of a Caregiver Advise, Record, Enable (CARE) Act. Across the country, AARP has lobbied strongly for the proposals.
These laws generally require hospitals and rehabilitation facilities to record the name of the caregiver in the patient’s medical chart. Medical centers and rehab centers must offer caregivers basic training or instructions, and the caregiver is supposed to be notified if a patient is discharged to another family member or back home.
McAllister said years ago, Cooper realized it needed to do a lot more to make sure people were healing safely at home. From day one, caregivers are part of discharge planning, she said. On day two, a social worker might help the family shop for help at home.
“On day three, we may start teaching inside the hospital,” McAllister said.
Hospitals don’t get paid more for those extra steps. But now Medicare hits medical centers with a financial penalty if too many patients bounce back to the hospital and have to be readmitted. The federal government’s Hospital Readmissions Reduction Programwas created under the Affordable Care Act.
Many at-home caregivers say the responsibility weighs heavily.
“It scares you,” said Angela Bobo. “When I’m in pain, I can tell you. She can’t tell me that’s she’s in pain.” So when her mother’s bedsore wouldn’t heal after so many days, Bobo said, “That’s when I said: ‘I’m going to take her to the doctor’s, because I don’t know what’s going on with this.’ ”
Bobo with her mother and home health nurse Dave Wilson; her son David’s fiancee, Angel; and David. (Kimberly Paynter/WHYY)
Bobo took her mother to the doctor, and he basically wrote a prescription saying her mom needed more help. That way, Medicare paid for skilled nursing care at home, and Angela Bobo got lessons in cleaning and dressing her mother’s wound. Now she knows what to expect.
“I told her it’s going to get worse before it gets better,” said David Wilson, a registered nurse from Crozer-Keystone Home Health Services who went to Bobo’s house. He’s a wound-care specialist whose job is house calls.
“To get a wound better, you have to remove the dead tissue and start from the ground up,” Wilson said.
Some nurses come to the house, do their job and leave, but Wilson said teaching is part of his work. Lots of times he’s the one nudging reluctant family caregivers who worry they’re going to do the wrong thing.
“I will tell you in home care, the biggest thing is fear,” Wilson said.
Wilson made several visits. He recommended a new wound-care regimen for Ruth Perez’ bedsore, and Perez got an airflow mattress that relieved the pressure on her skin. Medicare paid for that, too. The nurse returned several times to check on the family, and Bobo said that gave her more confidence that she was doing the right things to care for her mother.
This story is part of a partnership that includes WHYY’s health show The Pulse, NPR and Kaiser Health News.
Leading Republicans have vowed that even if they repeal most of the Affordable Care Act early in 2017, a replacement will not hurt those currently receiving benefits.
Republicans will seek to ensure that “no one is worse off,” said House Speaker Paul Ryan, R-Wis., in an interview with a Wisconsin newspaper earlier this month. “The purpose here is to bring relief to people who are suffering from Obamacare so that they can get something better.”
But that may be difficult for one big reason — Republicans have also pledged to repeal the taxes that Democrats used to pay for their health law. Without that funding, Republicans will have far less money to spend on whatever they opt for as a replacement.
“It will be hard to have comparable coverage if they start with less money,” Gail Wilensky, a health economist who ran the Medicare and Medicaid programs under President George H.W. Bush, said in an interview.
“Repealing all the ACA’s taxes as part of repeal and delay only makes a true replacement harder,” wrote Loren Adler and Paul Ginsburg of the Brookings Institution in a white paper out this week. It “would make it much more difficult to achieve a sustainable replacement plan that provides meaningful coverage without increasing deficits.”
The health law’s subsidies to individuals buying insurance and the Medicaid expansion are funded by two big pots of money.
The first is a series of taxes, including levies on individuals with incomes greater than $200,000, health insurers, makers of medical devices, brand-name drugmakers, people who use tanning salons, and employer plans that are so generous they trigger the much-maligned “Cadillac Tax.” Some of those measures have not yet taken effect.
However, the Congressional Budget Office estimated in early 2016 that repealing those provisions would reduce taxes by an estimated $1 trillion over the decade from 2016-2025.
The other big pot of money that funds the benefits in the health law comes from reductions in federal spending for Medicare (and to a lesser extent, Medicaid). Those include trims in the scheduled payments to hospitals, insurance companies and other health care providers, as well as increased premiums for higher-income Medicare beneficiaries.
CBO estimated in 2015 that cancelling the cuts would boost federal spending by $879 billion from 2016 to 2025.
The GOP, in the partial repeal bill that passed in January and was vetoed by President Barack Obama, proposed to cancel the tax increases in the health law, as well as the health premium subsidies and Medicaid expansion. But it would have kept the Medicare and Medicaid payment reductions. Because the benefits that would be repealed cost more than the revenue being lost through the repeal of the taxes, the result would have been net savings to the federal government — to the tune of about $317.5 billion over 10 years, said CBO.
But those savings — even if Republicans could find a way to apply them to a new bill — would not be enough to fund the broad expansion of coverage offered under the ACA.
If Republicans follow that playbook again, their plans for replacement could be hampered because they will still lose access to tax revenues. That means they cannot fund equivalent benefits unless they find some other source of revenue.
Some analysts fear those dollars may come from still more cuts to Medicare and Medicaid.
“Medicare and Medicaid face fundamental threats, perhaps the most since they were established in the 1960s,” said Edwin Park of the liberal Center on Budget and Policy Priorities, in a webinar last week.
Republicans in the House, however, have identified one other potential source of funding. “Our plan caps the open-ended tax break on employer-based premiums,” said their proposal, called “A Better Way.”
House Republicans say that would be preferable to the Cadillac Tax in the ACA, which is scheduled to go into effect in 2020 and taxes only the most generous plans.
But health policy analysts say ending the employer tax break could be even more controversial.
Capping the amount of health benefits that workers can accept tax-free “would reduce incentives for employers to continue to offer coverage,” said Georgetown University’s Sabrina Corlette.
James Klein, president of the American Benefits Council, which represents large employers, said they would look on such a proposal as potentially more damaging to the future of employer-provided insurance than the Cadillac Tax, which his group has lobbied hard against.
“This is not a time one wants to disrupt the employer marketplace,” said Klein in an interview. “It seems perplexing to think that if the ACA is going to be repealed, either in large part or altogether, it would be succeeded by a proposal imposing a tax on people who get health coverage from their employer.”
Wilensky said that as an economist, getting rid of the tax exclusion for employer-provided health insurance would put her “and all the other economists in seventh heaven.” Economists have argued for years that having the tax code favor benefits over cash wages encourages overly generous insurance and overuse of health services.
But at the same time, she added, “I am painfully aware of how unpopular my most favored change would be.”
Republicans will have one other option if and when they try to replace the ACA’s benefits — not paying for them at all, thus adding to the federal deficit.
While that sounds unlikely for a party dedicated to fiscal responsibility, it wouldn’t be unprecedented. In 2003 the huge Medicare prescription drug law was passed by a Republican Congress — with no specified funding to pay for the benefits.
Penny Gentieu did not intend to phone 308 physicians in six different insurance plans when she started shopping for 2017 health coverage.
But a few calls suggested to Gentieu, a photographer who lives in Toledo, Ohio, that doctors listed as “taking new patients” in the health plans’ directories were not necessarily doing so.
Surprised that information about something so central to health insurance could be so poor, she contacted almost every primary care physician listed as accepting new patients in every local plan. More than three-quarters of those doctors in her part of Ohio were in fact rejecting new patients, she found.
“It’s just not fair to be baited and switched,” said Gentieu, who must find a new doctor because her physician of several years will not be in any available plans in her area next year. “It’s just so crazy that you’re presented with this big list of doctors and then you call them and you realize there’s nobody there.”
As consumers review their coverage and shop for 2017 insurance through the federal health law’s online marketplaces during the annual open enrollment period, many of the directories they are using are outdated and inaccurate. Some doctors in the directories are not accepting new patients and some are not participating in the network, say experts, brokers and consumers. Still other physicians in the directories, who are listed as “in-plan,” charge patients thousands of dollars extra per year in “concierge fees” to join their practices.
“There continue to be inaccuracy problems,” said Justin Giovannelli, a Georgetown University professor, who studies coverage under the health law. Flawed directories are “a real barrier to accessing the care and accessing the insurance consumers have purchased.”
President-elect Donald Trump has pledged to repeal and replace the Affordable Care Act, which created the marketplaces. But insurers’ doctor lists are likely to remain a problem no matter what the law looks like, consumer advocates say.
Knowing which doctors and specialists are available within a plan is critical, as patients who visit a physician outside a plan’s network must pay much if not all of the cost.
The effect from flawed directories is even greater this year, as carriers have stopped offering coverage in many markets, meaning many consumers have only one or two insurers to choose from. The number of doctors and hospitals in plan networks also continues to shrink as insurers steer patients toward lower-cost narrow networks.
But so far no plans have been fined or kicked off the enrollment sites for having poor doctor directories, said Aaron Albright, a spokesman for the Centers for Medicare and Medicaid Services, which would enforce the rules. A Health and Human Services Department survey of Medicare plans for those 65 and older that was released in October found errors in nearly half of the listings in doctor directories.
Staci Doolin, a co-owner of a radon-testing company in Forsyth, Ill., consulted the Blue Cross Blue Shield of Illinois physician directory in January to make sure her primary care physician was in the network and even called the insurer to double-check.
The directory was wrong. The doctor was not in the plan.
“I thought I was good to go, and then I get this bill and it says my insurance didn’t cover anything and I owe $503,” Doolin said.
It took until September to resolve the matter — but not before the office threatened to summon a bill collector. She never recovered $100 she spent on a dermatologist who was listed in the directory but who also was not part of the plan.
No comprehensive data exists on doctor directory accuracy. The health law and HHS set standards for network adequacy but leave most enforcement up to states. States rarely test the lists for accuracy and often rely on consumers to report problems.
But third-party surveys frequently reveal big discrepancies. One recently published study showed as many as a fourth of the doctors listed in California directories last year for marketplace plans were not accepting new patients. About one doctor in 10 was not working for the listed practice.
“I have to think it’s pretty much the same nationwide,” said Simon Haeder, an assistant professor at West Virginia University, who led the study. “Insurers have a hard time keeping these up-to-date because it costs a lot of money, and providers don’t put a lot of effort on giving insurers updated information.”
Even doctors offices are frequently unclear about whether they participate in certain plans, said insurance brokers, who assist consumers shopping for plans.
Confusion multiplies when physicians are in some networks and not others offered by the same insurer. Doctors might be part of broader plan with many choices but not part of a narrow network with nearly the same name.
“We’d have customers call up [a doctor] and they’d say, ‘We take Blue Cross PPO,’” said John Jaggi, an Illinois broker. “But they didn’t take Blue Choice Preferred PPO.” Neither the patient nor the doctor’s office knew the difference, he said.
Even when primary-care doctors are in-network and accepting new patients, they increasingly charge expensive “concierge” fees on top of the usual deductibles, co-pays and premiums required by the policy, brokers say.
The primary-care roster for two plans from Florida Blue, the Blue Cross insurer in that state, lists four physicians working for NCH Healthcare, a Naples hospital system. One practiced at Harvard University and another worked for the Cincinnati Bengals football team.
What the directory doesn’t say is that seeing those four doctors costs patients an extra $3,000 a year in addition to thousands of dollars in premiums and deductibles.
Florida Blue cannot discuss contracts with network doctors and is unaware of recent complaints about concierge fees, said company spokesman Paul Kluding.
Directories for specialty physicians may be even more difficult to navigate than those for primary care doctors.
Brian Jarvis, who lives near Dayton, Ohio, needed an orthopedist after straining an Achilles’ tendon this summer. He had to go through 17 doctors listed as accepting his marketplace plan before finding one who really did, he said.
An online tool for Florida Blue does not let consumers search for anesthesiologists, who are often outside coverage networks even when their hospital is in network. Unwittingly being put under by a non-network anesthesiologist can cost patients thousands of dollars.
Even insurers admit patients are ultimately on their own to navigate the directory thicket.
“We recommend you contact the provider to confirm that they are in your plan and that the desired service is covered,” warns the online doctor-search tool for Anthem, one of the biggest sellers of marketplace plans under the health law.
Few consumers take that advice to heart like Gentieu.
“I was shocked at how awful the state of Ohio is for handling all of this,” said Gentieu, who was concerned about having a five-year-old hip replacement monitored.
She posted results on her website and sent complaint letters to plans and the Ohio Department of Insurance. Four of the insurers did not substantially dispute Gentieu’s research.
“While our findings do not exactly match those of Gentieu, we did identify issues which are being addressed,” said Don Olson, a spokesman for Medical Mutual of Ohio, a health insurer in the state.
Gentieu found that only 15 percent of those listed as primary care doctors in one Medical Mutual network were actually primary care physicians taking new patients. Many had not accepted new patients in years. Others were specialty doctors, nurse practitioners or medical residents who had not completed their training.
Physicians often fail to tell insurers when they stop accepting patients for certain plans, Medical Mutual and other carriers said.
Like HHS, Ohio instituted new directory-accuracy rules this year for marketplace plans. But enforcing them is “consumer-driven,” said David Hopcraft, a spokesman for the Ohio Insurance Department. The state does not check the lists until consumers report inaccuracies, one doctor at a time.
“That is completely insufficient,” said Lynn Quincy, a health care specialist for Consumers Union. “Only 13 percent of the non-elderly adult population know they have a state insurance department, so clearly that’s a pretty bad setup.”
On any given day, pediatrician Lindsay Irvin estimates a quarter of her patients need psychiatric help. She sees teens who say they are suicidal, and elementary school children who suffer chest pains stemming from bullying anxiety.
Though she does her best, she doesn’t consider herself qualified to treat them at the level they need at her practice in San Antonio. She doesn’t have the training, she said, to figure which medications are best suited to treat their various mental health conditions. And she doesn’t have time. She’s juggling stomach ailments, vaccinations and ear aches.
As a result, she’s seen some of her patients wind up in the emergency room or going without care. These experiences evidence the degree of unmet need for mental health treatment. “I see kids’ lives destroyed by not getting care,” she said.
Now, research abstracts presented Monday by the American College of Emergency Physicians offers insights into how frequently patients with mental health issues land in the emergency room — often because opportunities to intervene earlier are missed.
The researchers analyzed data compiled by the National Hospital Ambulatory Medical Care Survey, which tracked mental health visits to the emergency department between 2001 and 2011. The data tracks a national sample of patients who use hospital emergency and outpatient departments.
Compared with patients who have physical illnesses, the researchers found that people with mental health conditions rely more on the emergency department, and are more likely to be admitted when they show up. They tend to stay longer, too. The researchers have not yet described down how the visits broke out by age. But anecdotally, children and older patients — “the extremes” — appear particularly affected, said Suzanne Lippert, a clinical assistant professor in emergency medicine at Stanford University, and lead author on the abstracts.
These findings underscore two concerns, Lippert said. They highlight potential consequences when patients can’t find good outpatient mental health care, and that, when psychiatric patients arrive in a crisis, there’s often no good place for them to continue treatment once the immediate issue has been addressed.
Medical patients can usually be sent home “because we know they’ll be evaluated by [their] doctor in one or two days,” Lippert said. But psychiatric patients don’t always have that option because of gaps in the mental health care system.
Young patients may be affected the most, said Steven Schlozman, an assistant professor of psychiatry at Harvard Medical School and associate director of the Clay Center for Young Healthy Minds at Massachusetts General Hospital. He was not affiliated with the research.
“It’s a numbers game. Unless you live in a large urban area, you’re very unlikely to find a child psychiatrist,” Schlozman said. The emergency department, then, often is the only realistic venue for care.
Some numbers: About 6 percent of all emergency department patients — of all ages — had a psychiatric condition. More than 1 in 5 were admitted, compared with just over 13 percent of medical patients, and about 11 percent required transfer to another facility, compared with 1.4 percent. About 23 percent of mental health patients stayed in emergency care for longer than 6 hours, and about 1.3 percent for more than 24 hours — compared with 10 percent and half a percent of medical patients.
The most severely ill mental health patients were far more likely to spend extended periods of time in the ER. Bipolar disorder, depression, psychosis and having multiple conditions all tracked with stays longer than 24 hours.
These findings, the researchers write, highlight a “growing crisis.”
An online poll of emergency physicians released Oct. 17 offers evidence of how this plays out for young psychiatric patients. Of the 1,700 physicians responding, more than half (57 percent) reported increased wait times and boarding for children with mental health issues.
Plus, psychiatric patients can be harmed by long stays in cramped, overused emergency quarters, said Thomas Chun, an associate professor of emergency medicine and pediatrics at Brown University.
“We are the wrong site for these patients, and they have very important, very special needs. Our crazy, chaotic environment is not a good place for them,” said Chun, who was not affiliated with the abstracts.
Meanwhile, the young patients are least likely to get reliable care even after leaving. Whether they need regular follow-up with a psychiatrist, or a transfer to specialized facility, the resources often aren’t in place. The American Academy of Child and Adolescent Psychiatry estimates 8,300 such specialists practice in the country, while more than 15 million young patients need services.
“They’ll land in a pediatrician or family practice,” Irvin said. “I’m not trained to navigate the ins and outs of psychotropic meds,” she added, recalling difficulties she recently had finding a specialist who could prescribe the necessary medications and continue working with a suicidal teenage girl, who was one of her patients.
And children in crisis sometimes wait weeks for proper in-patient treatment, Chun said. That’s less common in his home state of Rhode Island which, he said, is “fairly resource-rich” in terms of psychiatric care — but he hears it often from colleagues in New York. Doctors will agree a child needs to be transferred, but no beds are available.
For children, the problem also doesn’t fall evenly. The resource squeeze is especially problematic for families with limited means, noted Alfiee Breland-Noble, an associate professor of psychiatry at Georgetown University Medical Center, who was not involved with the research. Cost, coupled with a stigma toward mental conditions, means low-income families are more likely to let a child’s ailment slide, until it reaches a crisis point.
That tracks with another finding: Emergency psychiatric patients were more likely to be uninsured than were physical health ones. About 22 percent of mental health patients lacked coverage, versus 15 percent for physical conditions — likely, Lippert said, in part because of the particular challenges the uninsured face in finding affordable psychiatry.
In San Antonio, just one visit to a child therapist can cost hundreds of dollars out of pocket, Irvin said. For her patients, the choice can be a week’s worth of groceries or seeing the doctor. Often, that means, “a kid will go neglected.”
By the time a child gets treatment, she added the mental condition can have produced physical ailments, too. It’s more expensive to treat, it’s bad medicine, and it’s avoidable, she said.
“These kids should never be in the emergency room,” she said. “They shouldn’t be waiting for 24 hours in a plastic chair.”