In a new 31-page report entitled “Valuing the Invaluable” AARP paints a vivid picture of the current state of family caregiving in the US. Updating its 2019 survey, the organization’s Public Policy Institute finds that “In 2021, about 38 million family caregivers in the United States provided an estimated 36 billion hours of care to an adult with limitations in daily activities. The estimated economic value of their unpaid contributions was approximately $600 billion.” By 2034, AARP notes, “adults age 65 and older will outnumber children under the age of 18 for the first time. The share of available family caregivers is projected to continue shrinking relative to the number of older adults who will potentially need long-term care. In addition, family caregivers will continue to face the dual demands of employment and caregiving responsibilities, which often include caring for an older adult and children simultaneously. Family caregivers are the backbone of long-term care in this country, said Susan Reinhard, senior vice president, AARP Public Policy Institute, and a lead author of the report. ‘The care they provide is invaluable to those receiving it. But this is not just a family issue: it impacts communities, employers, and our health and long-term care systems. We must treat family caregivers as the valuable resource that they are by providing them the support they need to care for loved ones while also caring for themselves.’” 

A strong bipartisan coalition has moved North Carolina into the Medicaid expansion column, making it the 40th state to accept federal funding under the affordable Affordable Care Act. A year-long effort, spearheaded by North Carolina hospitals, brought the enabling legislation to Gov. Roy Cooper’s desk. As Modern Healthcare’s Merdie Nzanga reports, “An estimated 600,000 North Carolina adults with incomes below 133% of the federal poverty level—$19,391 a year for a single person—would be eligible when the law takes effect.” But, as the Washington Post’s Rachel Roubein notes, “North Carolina may be the last of the Medicaid expansion holdout states to reverse course for a while. Supporters of extending the safety net coverage to hundreds of thousands more low-income adults have repeatedly run into Republican resistance in the 10 states that have long refused the Obamacare program. Three of the holdout states have had citizen-led ballot measure processes — Florida, Wyoming and Mississippi — but at the moment, that path only appears viable in Florida, where Medicaid advocates have their eye on fall 2026. Florida Decides Healthcare, a political committee supporting expansion, estimates it’ll cost roughly $10 million just to gather enough signatures to get the measure on the ballot, according to Jake Flaherty, the group’s campaign manager. Even if that happens in a few years, there’s another hurdle. An amendment to the constitution must garner the support of 60 percent of voters. Only once — in Idaho — has that happened for Medicaid expansion. Other states that haven’t expanded include Alabama, Georgia, Kansas, South Carolina, Tennessee, Texas and Wisconsin. Republicans opposing expansion have often cited fiscal concerns with the policy, which supporters push back against and point to extra two-year incentives signed into law in 2021.”

While efforts to expand Medicaid coverage proceed, a very immediate challenge to existing enrollees arrived April 1 in the form of the resumption of states Medicaid eligibility reassessments. As AARP explains in a “Fact Sheet,” the Covid pandemic induced a suspension of eligibility determinations previously conducted once a year. Since March 2020 states have received enhanced federal funding for implementing a “continuous enrollment” policy. “The policy has led to a record high Medicaid enrollment of over 84 million people as of October 2022. Rates of uninsured Americans have also dropped to record levels, hitting a low of 8 percent in early 2022. Overall, continuous enrollment helped ensure that tens of millions of people did not have to worry about losing health coverage during a time of health and economic uncertainty. But this is about to change. An AARP-funded NORC-University of Chicago survey predicts that the unwinding process could result in one million people ages 50 to 64 being dropped from Medicaid over the next year, from approximately 12.2 million as of March 31, 2023 to an estimated 11.2 million on April 1, 2024. For their part, states and the federal government are working to ease the transition from Medicaid to the Marketplace for those who are no longer eligible for Medicaid. The federal government has put in place several policies including financial assistance, enrollment windows, and connections between the Medicaid and Marketplace eligibility processes. State Medicaid officials have been working closely with their Marketplace counterparts, and both states and the federal government have been developing communication strategies to help ensure that people who lose Medicaid are aware of Marketplace coverage options and the availability of financial assistance.” For additional information regarding individual state plans to manage the unwinding process see the National Academy for State Health Policy’s breakdown here.

St. Patrick’s Day 2023 marked an important date in the history of Medicaid Home and Community-Based services: the deadline for full implementation of the 2014 HCBS Settings Rule that sought to protect individuals' autonomy to make choices and control the decisions affecting their daily lives. In a joint statement issued by CMS and the Administration for Community Living (ACL), the agencies observe that “the Settings Rule was created to ensure that every person receiving Medicaid-funded HCBS has full access to the benefits of community living. It protects individuals’ autonomy, a right most people take for granted. This includes controlling personal resources; being treated with privacy, dignity, respect, and freedom from coercion and restraint; deciding what and when to eat; having visitors; being able to lock doors; and having the protections of a lease or other legally enforceable agreement. The rule requires a person-centered process for planning HCBS, which means that the individuals receiving services direct the planning process and the plan reflects their own preferences and goals they have set for themselves.” 

 

The CMS-ACL statement does acknowledge that the COVID-19 pandemic created significant challenges to implementing some provisions of the rule. “In recognition of that reality, CMS is allowing states more time – with an approved corrective action plan that includes specific milestones and deadlines – to demonstrate full compliance with requirements that are directly affected by the pandemic and the workforce crisis. At the same time, recognizing the long wait for the benefits promised by the rule, all states must now be fully compliant with the rule’s requirements regarding participant rights and self-determination, such as those described above.” “We’re putting our money where our mouth is,” said ACL Acting Administrator Alison Barkoff,” by providing resources, information, and guidance on stakeholder engagement to our disability and aging networks, including state developmental disabilities councils; protection and advocacy organizations; university centers for excellence in developmental disabilities; and centers for independent living, as well as the long-term care ombudsman program. This initiative also includes self-advocates as key partners, including Self Advocates Becoming Empowered (SABE) and the Autistic Self Advocacy Network (ASAN). These groups are working together to strengthen the engagement of individuals, families, and advocates in every state.”

The Covid-19 Public Health Emergency is scheduled to officially end May 11. Recent statistics on infection and death rates would seem to validate the upcoming milestone. As US News’ Cecelia Smith-Schoenwalder reported “The week ending in March 15 saw 1,706 coronavirus deaths – the lowest number reported since March 25, 2020, shortly after the World Health Organization first called the coronavirus a pandemic. That week, which was only the second week of the pandemic that the CDC tracker offered death numbers, saw 1,119 deaths. Coronavirus cases and hospitalizations are also on the decline. Weekly infections are the lowest reported since the summer of 2021, but experts caution that the data is a drastic undercount as many rely on at-home testing that doesn’t get reported to health departments. The positive trends come after the U.S., for the first time during the pandemic, avoided a winter surge. The development’s main driver is likely the high level of immunity across the population whether through vaccination, infection or both.”

Examining somewhat earlier data on its tracking dashboard, AARP affirmed that the trend was also evident in nursing homes. During the four weeks ending 2/19/2023, rates of COVID-19 resident deaths, resident cases, and staff cases all fell by about one-third compared to the previous four weeks. At the same time, however, death and case rates at the state level may be very different than the national average, and many states depart from the national trend. In 12 states, the rate of COVID-19 resident deaths was higher for the four weeks ending 2/19/2023 compared to the previous four weeks. Eleven states had an increase in resident and/or staff case rate in the most recent four weeks. And, while bivalent boosters -- designed to protect against the Omicron variants as well as previous strains -- have been available since September, 2022, utilization has been low. As of mid-February, only a little more than half of nursing home residents (53%) and less than one-quarter of healthcare staff (22%) were up to date on COVID-19 vaccinations.

The New York Times’ Paula Span, in a February blog post, emphasized the still disparate Covid-19 impact on vulnerable segments of the population. “For older Americans, the pandemic still poses significant dangers. About three-quarters of Covid deaths have occurred in people over 65, with the greatest losses concentrated among those over 75. Hospital admissions, which have also been dropping, remain more than five times as high among people over 70 as among those in their 50s. Hospitals can endanger older patients even when the conditions that brought them in are successfully treated; the harmful effects of drugs, inactivity, sleep deprivation, delirium and other stresses can take months to recover from — or can land them back in the hospital. The demographic divide reflects a debate that continues as the pandemic wears on: What responsibility do those at lower risk from the virus have to those at higher risk — not only older people, but those who are immunosuppressed or who have chronic conditions? Should individuals, institutions, businesses and governments maintain strategies, like masking, that help protect everyone but particularly benefit the more vulnerable? Hastings Center bioethicist and research scholar Nancy Berlinger, made a similar point: ‘The foundational questions about ethics are about what we owe others, not just ourselves, not just our circle of family and friends.’ Three years in, the societal answer seems clear: With mask and vaccination mandates mostly ended, testing centers and vaccination clinics closed and the federal public health emergency scheduled to expire in May, older adults are on their own. ‘Americans’ said Dr. Berlinger, ‘do not agree about the duty to protect others, whether it’s from a virus or gun violence’. In Salt Lake City Vic Caretti encounters comments from strangers because he wears a mask in public. ‘I don’t think people understand how Covid affects older Americans,’ Mr. Caretti said with frustration. ‘In 2020, there was this all-in-this-together vibe, and it’s been annihilated. People just need to care about other people, man. That’s my soapbox.’”

Breaking ranks with CMS, overseer of Medicare and Medicaid, the Veterans Administration has announced it will widely cover the recently FDA-approved AD drug Leqembi. The decision comes two months after the Food and Drug Administration approved the medicine based on clinical trials showing Leqembi moderately slows cognitive decline in people with mild cognitive impairment or early-stage disease. There are, however, some risks of swelling and bleeding in the brain that require monitoring. Notably, reports StatNews’ Ed Silverman, “the FDA endorsed the drug under a designation called accelerated approval. The agency typically grants such an approval when a drug that is designed to treat a serious disease has few alternatives, but also has an uncertain benefit. Significantly, accelerated approval requires companies to conduct another clinical trial of their medicines before full approval can be considered. The Centers for Medicare and Medicaid Services restricted coverage of Leqembi by using the same criteria — known as a national coverage determination — that were applied last year to Aduhelm, the controversial Alzheimer’s treatment developed by Biogen. For its part, however, the VA published a guide on its formulary saying coverage will extend to any veteran who meets specified criteria, including an MRI scan within the previous year, amyloid PET imaging consistent with Alzheimer’s, and a staging test indicating mild Alzheimer’s dementia.”

The ongoing dispute over the new Alzheimer’s Disease drugs’ availability flared openly at a March Senate DHHS appropriations hearing when Maine Sen. Susan Collins, as reported by MedPage’s Joyce Frieden, confronted HHS Secretary Xavier Becerra “I just do not understand CMS's misguided and outright unprecedented decision to not cover a whole class of Alzheimer's drugs. It is not CMS's job to second-guess the drug approvals of the FDA. It's not enough to say you can get it if you're in a clinical trial. That's so little help to states like ours where there may not be a clinical trial going on, or it may be far away from most people in the state. I'm just asking you to tell CMS to let this drug be used, and let people get access to it when the patient and the clinician agree it's the appropriate treatment." But Becerra pushed back. "There's no doubt we want to get to the type of lifesaving treatment Americans can benefit from," he said. "The difficulty here is that we have to remember that the process that the FDA uses is different from the process that legally CMS must use to make their determinations. And while it may not make a lot of sense to folks, there is a legal distinction. And CMS has to remain consistent in the way it treats any drugs."

HHS is seeking nominations by April 28 for six new non-federal members of the Advisory Council on Alzheimer’s Research, Care and Services. The Advisory Council makes recommendations to Congress and the Secretary of Health and Human Services about ways to reduce the financial impact of Alzheimer's disease and related dementias and to improve the health outcomes of people with these conditions. The Advisory Council also provides feedback on a National Plan to Address Alzheimer's disease. For further information on the nomination process access this link.

In the wake of the pandemic’s severe impact on health on facility and health resources, staffing issues remain front and center across the continuum of care. As CMS ponders the issuance of nursing home staff-resident ratio requirements, California has moved to incentivize nursing homes to add staff with bonus Medicaid payments. Starting next year, reports Kaiser Health News’ Samantha Young, “Rather than limit bonuses to top-performing facilities, the state will hand out additional Medicaid payments next year to nursing homes — even low-rated ones — that hire additional workers, reduce staff turnover, or improve quality of care. Facilities will be scored on their performance so facilities that do more will earn larger bonuses. And to ensure an acceptable level of care, the state will sanction facilities that fail to meet clinical and quality standards for patients. Patient advocates and industry officials described the changes as an improvement, but they expressed skepticism about whether they would work. They said the bonuses fall short of what’s needed to address chronic understaffing and the closure of rural facilities. Last year, lawmakers allocated $280 million for the bonus program — just a fraction of the more than $6 billion that nursing homes take in every year from Medi-Cal, the safety-net health program that insures two-thirds of the state’s nursing home residents. ‘This is not going to move the needle fundamentally as long as the state continues to disinvest so badly into nursing homes,’ said Craig Cornett, CEO of the California Association of Health Facilities. ‘Facilities desperately want more staff. They want to hire more staff, but they are paid so poorly through Medi-Cal that that’s virtually impossible.’”

Meanwhile, in a letter to CMS administrator Chiquita Brooks-LaSure US House Democrats expressed strong support for strong minimum staffing standards. “Under the 1987 Nursing Home Reform Act, nursing homes must provide 8 consecutive hours of registered nursing services per day and 24 hours of licensed nursing services per day. As you know, the connection between staffing levels and the safety and quality of care is well established, with studies showing a correlation between inadequate staffing and lower quality of care. In 2001, a CMS study found that nursing home residents require 4.1 hours per resident day of direct nursing care spread across different roles (e.g., registered nurses, certified nursing assistants). To date, CMS has not required a minimum of 4.1 hours and this standard may now be too low, given changes in acuity of nursing home residents. Chronic understaffing contributes to high rates of stress, injury, and burnout among nursing assistants, and ultimately to high rates of turnover. Thus, we believe that creating a robust staffing standard will go a long way towards improving the quality of nursing home jobs, which in turn will actually help attract more workers and resolve current workforce shortages in this industry.”

Staffing concerns of a somewhat different nature are emerging in hospital emergency rooms: patients are finding that more physician assistants and nurse practitioners are replacing experienced physicians as hospitals look to cut costs. “This staffing strategy,” write Kaiser Health News' Brett Kelman and Nashville Public Radio’s Blake Farmer, “has permeated hospitals, and particularly emergency rooms, that seek to reduce their top expense: physician labor. While diagnosing and treating patients was once their domain, doctors are increasingly being replaced by nurse practitioners and physician assistants, collectively known as “midlevel practitioners,” who can perform many of the same duties and generate much of the same revenue for less than half of the pay. Federal data shows emergency medicine doctors are paid about $310,000 a year on average, while nurse practitioners and physician assistants earn less than $120,000. Generally, hospitals can bill for care by a midlevel practitioner at 85% the rate of a doctor while paying them less than half as much. Critics of this strategy say the quest to save money results in treatment meted out by someone with far less training than a physician, leaving patients vulnerable to misdiagnoses, higher medical bills, and inadequate care. Private equity staffing companies have been among the most aggressive in replacing doctors to cut costs, said Dr. Robert McNamara, a founder of the American Academy of Emergency Medicine and chair of emergency medicine at Temple University. ‘It’s a relatively simple equation,’ McNamara said. ‘Their No. 1 expense is the board-certified emergency physician. So they are going to want to keep that expense as low as possible.’ Not everyone sees the trend of private equity in ER staffing in a negative light. Jennifer Orozco, president of the American Academy of Physician Associates, which represents physician assistants, said even if the change — to use more nonphysician providers — is driven by the staffing firms’ desire to make more money, patients are still well served by a team approach that includes nurse practitioners and physician assistants.”

Researchers at the University of California San Francisco and John Hopkins University are conducting a survey to learn more about how adults with mild-to-moderate hearing loss are responding to newly available over-the-counter hearing aids. The goal is to determine whether the OTC aids will achieve what they were designed to accomplish – in terms of spread of use as well as decreased costs. Those willing to complete a 10 to 20 minutes survey are invited to access this link.

Also emanating from UCSF is the first in a series of policy briefs focusing on the estimated three million people living alone with cognitive impairment. Compared to older adults with cognitive 

impairment who live with others, older adults with cognitive impairment who live alone are more likely to: be female, older, and Black; not own a home; have less wealth; and be widowed, divorced, or never married. Moreover, distress, fear, and uncertainty are common experiences of older Americans living alone with cognitive impairment, conditions stemming from: trying to manage their condition alone; finding needed services; and living in chronic uncertainty.

The National Alliance for Caregiving has published a 62-page guide to “Supporting Diverse Family Caregivers” for patient advocacy groups. “There are over 53 million family caregivers in the United States,” the guide states, “and of these 53 million caregivers, 17% identify as Hispanic/Latino, 14% identify as African American, 8% identify as LGBTQ+ and 5% identify as Asian American or Pacific Islander. One out of every four American Indian and Alaska Native adults identify themselves as a family caregiver. This number continues to grow each year, and soon, the aggregate number of family caregivers from diverse communities will outnumber non-Hispanic white, non-LGBTQ+ caregivers. Racial and ethnic minority populations face continuous health disparities, including disproportionate levels of chronic disease like lung cancer, heart disease, blood cancer and lupus. Caregivers who are from a diverse racial or ethnic community or who identify as a diverse sexual orientation or gender identity often face inequities in the healthcare system. These caregivers’ different cultural backgrounds and identities often shape concepts of their role that influence their expectations, assumptions, and their needs throughout their caregiving journey, yet these needs are often going unanswered or misunderstood.”

While Congress and the White House managed to enact several prescription drug cost control measures 2022, their implementation for the most part will not occur quickly. For now the staggering out-of-pocket expense of accessing new life-changing medications, writes the New York Times’ Gina Kolata and Francesca Paris, means that “for many people using private insurance, innovative medicines are dangling just out of reach. The new era in treating previously intractable diseases began with huge scientific leaps after the turn of the century, allowing researchers to find genes they could target to treat cancers and other diseases. Scientists could harness the immune system or suppress it and even alter patients’ very DNA with gene therapy. 

 

Even when Medicare’s 2025 cap comes into play — or the $9,100 cap that already existed for those receiving insurance under the Affordable Care Act — many will still find drugs unaffordable. Research suggests large numbers of patients abandon their prescriptions when faced with $2,000 in payments. Researchers for Brigham and Women’s Hospital in Massachusetts found that the median price of a new drug was around $180,000 in 2021, up from $2,100 in 2008. Those high prices are a factor in a stark wealth gap in medical outcomes. Dr. Otis Brawley, a professor of oncology and epidemiology at Johns Hopkins University, points to cancer, where the death rate for Americans with college educations, a proxy for wealth, is 90.9 per 100,000 per year. For those with a high school education or less, the rate is 247.3. 

 

Out-of-pocket costs can run to thousands or tens of thousands of dollars. Often, even those who can afford commercial health coverage or get it through their employer may face insurers that refuse to pay. Other times, an insurer pays part of the cost, but high co-pays, deductibles and cost sharing put treatments out of reach for many. Some doctors agonize over balancing their responsibility to prescribe effective treatments with anxieties about the financial burdens on patients. ‘The idea that the care you deliver could bankrupt somebody and hurt an entire family is devastating,’ said Dr. Benjamin Breyer, a reconstructive urologist at the University of California, San Francisco. 

 

Some good news on healthcare debts incurred by residents of the nation’s capital: The District of Columbia, writes the Washington Post’s Jenna Portnoy, “will use $900,000 in year-end surplus funds to purchase debt, for pennies on the dollar, on behalf of about 90,000 D.C. residents earning up to four times the federal poverty level or whose medical debt is at least 5 percent of their income, according to city officials. D.C. joins a growing wave of governments and nonprofit groups targeting the nation’s ballooning medical debt since a 2020 federal advisory opinion cleared the way for a nonprofit to purchase debt to abolish a person’s liability. The debt cancellation will be automatic and District residents will be notified by mail when their burden has been eliminated, officials said; the city expects to award a grant to a third-party debt purchaser in late April or early May. Americans have at least $195 billion in medical debt, according to a 2019 analysis of federal data by the Kaiser Family Foundation. An estimated 100 million people hold this debt, Kaiser found, which is the leading cause of personal bankruptcy.”

“Senior care is crushingly expensive,” declares the Washington Post headline, “and boomers aren’t ready.” “A wave of Americans,” writes the Post’s Christopher Rowland, “has been reaching retirement age largely unprepared for the extraordinary costs of specialized care. These aging baby boomers — 73 million strong, the oldest of whom turn 77 this year — pose an unprecedented challenge to the U.S. economy, as individual families shoulder an increasingly ruinous financial burden with little help from stalemated policymakers in Washington. The dilemma is particularly vexing for those in the economic middle. They can’t afford the high costs of care on their own, yet their resources are too high for them to qualify for federal safety-net insurance. An estimated 18 million middle-income boomers will require care for moderate to severe needs but be unable to pay for it, according to an analysis of the gap by the Center for Retirement Research at Boston College. ‘It’s this really enormous financial bomb sitting out there that most people are just hoping won’t hit them,’ said Marc A. Cohen, co-director of the LeadingAge LTSS Center at the University of Massachusetts at Boston. ‘There’s an incredible amount of confusion and denial.’ Advocates for the elderly say a solution would be to build insurance programs that will pay for all long-term care and spread the financial burdens over everyone. Germany, Japan and South Korea have government-sponsored long-term care insurance. Congress authorized a long-term care insurance program as part of the Affordable Care Act in 2010, but after 19 months of study, the Obama administration dropped it, calling it unworkable. Washington state this year is launching a long-term care insurance program, financed by a mandatory employee payroll tax of 0.58 percent, that will provide families money for long-term care with a lifetime cap of $36,500. Proponents are working on building support for similar programs in California and Michigan. 

 

Beth Roper scrambled over the summer to find ways to care for her husband Doug, who suffers from Alzheimer’s. She started to apply for adult day-care openings, but the application process was taking too long. Home-care agencies seemed too costly and would still leave her with the heavy burden of caring for Doug overnight. She never seriously considered nursing homes, she said, because Doug was fairly healthy except for his cognitive decline. She found a suitable room in assisted living for $3,500 a month, but after just four days there the facility management told her he was a wandering risk and needed to be placed in a costlier locked memory-care unit, Beth said. Even there, he recently fell and suffered cuts and bruises on his head and face. Now Beth worries about when she can retire and what, if anything, will be left for her own long-term care. She’s baffled there is no safety net for families in her situation. The Ropers saved for college, they paid off their house, they tithed at church, and they paid thousands of dollars in taxes for more than 70 years of combined work. ‘We did everything our country asked us to do,’ she said.”

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Editor: Alan K. Kaplan, (attorney and health policy consultant)

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