Medicare and Medicaid: The 57^th Anniversary

July 30, 2022 marks the 57^th anniversary of Pres. Lyndon Johnson’s trip to Independence Missouri where–flanked by former Pres. Harry Truman–he signed the Medicare and Medicaid programs into law. Twenty years earlier Truman had fought strenuously, but in vain, to enact a national health insurance system; the forces of organized medicine and other lobby groups had proved too powerful to overcome. Now, his successor, propelled by an overwhelming electoral mandate in the wake of Pres. Kennedy’s assassination, as well as Johnson’s unique jawboning abilities, finally got the job underway. An incomplete victory short of a universal program, but 57 years later, Medicare and Medicaid have become bedrock building blocks of Americans’ healthcare security. Ongoing political efforts to tackle the structure’s shortcomings encompass eligibility, benefits, fiscal stabilization, health delivery costs, and other difficult issues. Most recently gaining congressional and White House attention are drug prescription costs, the future of home-based care, the pluses and minuses of the traditional Medicare program vis-a-vis Medicare Advantage plans, and the revenue options available to ensure the program’s future solvency. With that said, Pres. Johnson’s 1965 signing ceremony vision remains aspirational:

But as I grew used to providing the family with bedside updates, I realized that this was what our care once was and should be again. To think that a possible Covid exposure would not cause panic is itself a sign of great progress. But at the same time, we are so far from where we thought we might be by now. When I walked through the halls of the Covid intensive care unit back in the spring of 2020, I told myself, as did so many of us in health care, that we would improve care for those who were disproportionately affected by this virus. But those sorts of promises are naïve and empty without a plan for how to make and sustain real change to protect the vulnerable among us. Then again, in just a few weeks, some newly minted doctors begin their internships, and, with that, comes a chance for reinvention. (Those new doctors) will find themselves in a hospital in transition, in a country that has suffered more than a million deaths. We will teach them about all of it, about how to manage sepsis and heart failure and trauma, about the pandemic and how it was before. And for a moment, maybe, we can step back and see it all through their eyes — the nervousness and the excitement and, more than anything, the hope for what is to come.” (Dr. Daniela J. Lamas, the New York Times)

Recent AARP data show an uptick in nursing home Covid cases. “One in 35 nursing home residents,” writes 19thNews’ Sara Luterman, “tested positive for COVID-19 in June, a 27 percent increase from the previous month. The death rate from COVID between May and June of this year nearly doubled, from 0.04 deaths per hundred residents to 0.07 deaths per hundred residents. ‘The number of cases is pretty high,” said Ari Hauser, AARP’s lead nursing home data analyst. ‘It’s as high as it was during the summer and fall of 2020, before there was a vaccine. It’s higher than it was during the Delta wave last year.’ Cases were also up 42 percent among staff, the majority of whom are disproportionately women of color, according to the nonpartisan Kaiser Family Foundation. While deaths at nursing homes are higher than they have been in previous months, they are not as high as they were early in the pandemic, which Hauser attributes to high vaccination rates in nursing homes: On average across the country, 88 percent of residents and 89 percent of nursing home staff have received their primary series of COVID-19 vaccines. ‘I don’t envision another month where we have upwards of 20,000 people dying [like early in the pandemic],’ he said. However, low and slow-to-rise rates of booster vaccinations, particularly among staff, are a concern. According to AARP, only 51 percent of nursing home staff have received a booster as of June. Seventy-two percent of nursing home residents have received a first booster nationwide. One thing that is different about the current wave, says Hauser: ‘It’s everywhere. When numbers are low in one area of the country, it really just means that the impacts happened last month, or they’re going to happen next month.’ Hauser also encouraged caution when it comes to praising any particular state’s handling of the pandemic. ‘There’s a desire, if a particular state is doing well at this point in time, to attribute low cases in that state to something that state has done,’ he said. ‘I don’t think it has anything to do with that. There’s no state that’s being spared from the virus.’”

Debate over how to address nursing home staffing shortages shows no sign of abating. The latest salvo: a report prepared for the industry trade association, the American Health Care Association (AHCA) by accounting firm CLA (CliftonLarsonAllen LLP). CLA’s conclusion regarding the impact of implementing a staffing minimum of 4.1 hours per resident day (HPRD): “ 94 percent of nursing homes that care for more than 900,000 residents would need to increase staffing levels in order to be in compliance with such a requirement; it would cost $10 billion a year and require hiring more than 187,000 nurses and nurse aides to meet the standard; and 18 percent of residents, or more than 205,000 residents, may be at risk of displacement as facilities are forced to potentially reduce their census in order to meet the higher staffing standard.” “This report,” said Mark Parkinson, president & CEO of AHCA, “makes it crystal clear that increasing staffing standards in nursing homes requires substantial and consistent government resources. The unintended consequences of this sort of unfunded mandate would be devastating to hundreds of thousands of vulnerable residents who could be forced out of their nursing home.”

Not so fast, the Center for Medicare Advocacy’s Toby Adelman countered. “The report finds that a 4.1 hours per resident per day staffing standard identified in a federally-mandated staffing report more than 20 years ago is not currently met by 94% of nursing facilities nationwide. Think about that admission – the major national nursing home trade association admits that the overwhelming majority of nursing facilities in the country do not have enough staff to meet a standard that was recognized more than 20 years ago as the minimum staffing level needed to provide residents with appropriate care. Clearly, more nursing staff are necessary in 2022 to meet the greater health care needs of today’s nursing home residents. AHCA, however, argues that meeting the 20+-year old staffing standard would require hiring 187,000 nurses and nurse aides, at a cost $10 billion a year. Even if that estimate were true, $10 billion is just over 5% of the $196.8 billion in national nursing home expenditures in 2020. Moreover, the $10 billion price tag for nursing staff, identified by CLA and AHCA, does not mean that facilities need $10 billion more than they receive now. Nursing facilities divert a considerable amount of their revenues to profits, management fees, related party contracts, and other expenses unrelated to resident care. The nurse staffing needs of nursing facilities are considerable, the challenges of recruiting nursing staff are significant, and undoubtedly, there will be some additional costs to pay for more staff. Addressing these challenges in a meaningful and comprehensive way must be the country’s public policy goal. The nursing home industry must be part of the solution, not a hindrance to better care for residents.”

CMS, Kaiser Health News’ Susan Jaffe reports, is currently considering whether to establish a national Medicaid spending requirement for SNF direct patient care and an accompanying limit on the amount used for operations, maintenance, capital improvements and profits. The federal interest, Jaffe writes, “follows laws enacted in three states — Massachusetts, New Jersey, and New York — to mandate spending on care. Massachusetts requires nursing homes to spend at least 75% of revenue on residents’ care. New Jersey’s nursing homes must spend at least 90% of Medicaid payments on resident care, and no more than 5% can go to profits. New York mandates that at least 70% of nursing home revenue — including payments from Medicaid, Medicare, and private insurance — be used to care for residents and that at least 40% of the money for direct care pay for ‘resident-facing’ staff. Profits are capped at 5%. All three states promise a boost in state Medicaid payments to facilities that comply with the laws. The widely reported National Academy of Medicine’s April report on improving nursing home care endorsed the direct care spending strategy. National nursing home industry groups, however, oppose such requirements; in New York, two trade associations and about half the state’s homes have filed two lawsuits to block the state’s spending directive. Groups bringing the lawsuits argue that forcing owners to spend more money on direct care leaves less money for maintaining their facilities and that the quality of care will suffer. They also claim Medicaid doesn’t cover the cost of caring for residents. But advocates for residents say facilities can hide their profits by overpaying related businesses they own, such as laundry or food-service companies. Although a spending mandate is new for nursing homes in the three states, it has become routine for health insurers nationwide. Under the Affordable Care Act’s ‘medical loss ratio’ provision, health insurance companies must spend at least 80% of premiums on beneficiaries’ medical care. A maximum of 20% can be spent on administrative costs, executive salaries, advertising, and profits. Companies that exceed the limit must refund the difference to beneficiaries.” 

As of October 24 state nursing home survey teams will be using an updated 847-page CMS survey guide. As reported by the Long Term Care Community Coalition (LTC CC), the wide-ranging manual covers complaint investigations, resident abuse and neglect, admission transfers and discharges, infection control, nurse staffing and a host of other aspects of nursing home operations critical to residents well-being. A detailed section-by-section analysis highlighting new survey requirements is available from Justice in Aging. An earlier Justice in Aging publication – 25 Common Nursing Home Problems - and How to Resolve Them – can be revisited to gain further insight into issues covered by the survey guide.

Up in the air, legislatively speaking, but not forgotten: more than 50 Democratic members of Congress have written their House and Senate leadership to urge final inclusion of a number of health related provisions in the budget reconciliation package now under consideration. Among the priorities: increased funding for Home and Community-Based Services (HCBS). Nearly 820,000 Americans, the representatives’ letter noted, “are on wait lists to receive essential home health care services. There is also an extreme care worker shortage, with roughly 18% of home care workers living in poverty and many receiving few to no benefits. Robust funding for HCBS will transform these low-paid care worker jobs, which are overwhelmingly held by women of color, into sustainable employment with vital benefits and protections. There must be a robust federal investment to allow our seniors, people with disabilities, and caregivers to live with dignity in their communities.”

The recent Aduhelm debacle has posed a critical challenge to Alzheimer’s Disease researchers: where do we go from here? Surveying the current universe, the Wall Street Journal’s Dominique Mosbergen observed that “Aduhelm was hailed as a potential blockbuster that targeted a root cause of the disease by clearing a sticky protein known as amyloid from the brain. Abnormal accumulations of amyloid called plaque and tangles of another protein known as tau are characteristic features of the brains of people with Alzheimer’s. But research into the benefits of targeting amyloid in Alzheimer’s patients has been mixed. Other potential causes and risk pathways that Alzheimer’s researchers are probing include dysfunctional tau metabolism and the possibility that tau buildup can spread among cells like an infection. There are also theories that Alzheimer’s could be a form of diabetes or the result of a viral infection. Yet another theory is that a dysfunctional immune response involving cells called microglia could contribute to Alzheimer’s. Microglia remove debris, pathogens and toxic proteins including amyloid plaque; when they aren’t functioning properly, possibly because of a genetic mutation or other age-related factors, their ability to clear plaque diminishes, said Beth Stevens, a neuroscientist at the Broad Institute of MIT and Harvard.” 

“More than 140 drugs,” the Journal’s Mosbergen reported further, are in the pipeline as potential Alzheimer’s treatments, including drugs that target tau and microglia function, according to a survey of registered clinical trials in the U.S. Among them three amyloid-targeting monoclonal antibodies, which are in the same class as Aduhelm, are in development. Some neurologists say the risks of amyloid-targeting monoclonal antibody treatments, including brain swelling, outweigh potential therapeutic benefits. Others say the drugs could have some positive effect, particularly if administered early in the disease’s progression. Researchers are also attempting to identify potential biomarkers in the blood and cerebrospinal fluid that could be used to detect Alzheimer’s early. No other therapy, however, is expected on the market for at least five years, according to the Global Alzheimer’s Platform Foundation, which funds Alzheimer’s research. ‘If you’re a patient with mild cognitive impairment, your only hope is one of the four (amyloid) drugs,’ said John Dwyer, president of the foundation.”

Meanwhile, adding to the gloom emanating from amyloid related trials, Biotech’s Roche-Group-Genetic announced yet another failure in June; its drug crenezumab -- tested in an extended Colombian family of 6000 people of whom about 1200 have a genetic mutation that virtually guarantees very early-onset Alzheimer’s -- did not result in the prevention or slowing of cognitive decline. The results, writes the New York Times’ Pam Bullock, “are another setback for drugs that target amyloid. ‘I wish there were something more positive to say,’ said Dr. Sam Gandy, the director of Mount Sinai’s Center for Cognitive Health, who was not involved in the crenezumab research. ‘The pathogenic mutation in the Colombian family is known to be involved in amyloid metabolism. The thinking was that these were the patients most likely to respond to anti-amyloid antibodies.’ Additional data from the trial will be presented at a conference in August; the reported results did not include more detailed information from brain imaging or blood analysis of the drug’s effects on proteins and other aspects of the biology of Alzheimer’s. They also did not reflect increases in the dose of crenezumab, which researchers began giving to patients as they learned more about the drug, one participant’s wife, Maria Areiza of Medellín, said her husband, Hernando was among the first patients to enroll in the trial. Hernando, 45, who worked fixing telephone cables, began developing symptoms of cognitive decline about eight years ago. He has since progressed to Alzheimer’s dementia. Because his deterioration has been relatively slow, his family had been hopeful that he was benefiting from the trial. ‘I had put all my hopes in this study,’ his wife said.” 

The Alzheimer’s research news has not been all negative, however. A Boston University team that turned its attention to the diagnostic side of the A.D. puzzle has now concluded, writes MedPageToday’s Judy George, that its machine-learning model “identified mild cognitive impairment and dementia from digital voice recordings of neuropsychological tests. The model used voice recognition to transcribe recordings to text and leveraged natural language processing methods for analysis, the report’s authors wrote. ‘We view our work as contributing to the emergence of digital biomarkers for Alzheimer's and dementia,’ team member Ioannis Paschalidis, Ph.D said. ‘We believe they're essential to remote, global, automated assessment at scale, helping to identify individuals at earlier stages of the disease who could become prime targets for the next generation of clinical trials.’ Last year, a small study in Japan showed that a predictive model correctly identified people with Alzheimer's dementia with 90% accuracy using audio files of phone conversations of 24 people with confirmed Alzheimer's and 99 healthy controls. That research relied on the fact that people with Alzheimer's disease were likely to speak slowly with longer pauses, spending more time finding correct words. In the current study, however, how people spoke and whether they faltered were less important than the content of what they were saying. ‘It surprised us that speech flow or other audio features are not that critical; you can automatically transcribe interviews reasonably well and rely on text analysis through AI to assess cognitive impairment,’ said Paschalidis. The study also suggested which parts of neuropsychological tests may be important for discerning impaired cognition using AI; the Boston Naming Test -- a task in which people are asked to label a picture using one word -- led to an accurate dementia diagnosis more often than others. Improving the model's discrimination between normal cognition and mild cognitive impairment, Paschalidis acknowledged, still needs work. ‘That will always be harder to discriminate. The findings,’ however, ‘suggest models like this may help diagnose cognitive impairment using audio recordings, including those from virtual or telehealth appointments.’” 

From the Family Caregiver Alliance comes “You’re Not Alone,” a four-part video series on caregiving for individuals diagnosed with a neurodegenerative disease. “If you’re looking for guidance on how to care for someone with a neurodegenerative disease,” Leah Eskenazi, FCA’s Operations Director observed, “there’s not a lot out there. Not only is there a shortage of information, there’s so much to learn—about treatment options, care planning, what’s covered by Medicare…the list goes on.” The videos can be accessed at the following sites: Amyotrophic Lateral Sclerosis (ALS); Huntington’s Disease (HD); Multiple Sclerosis (MS); and Parkinson’s Disease (PD). “There’s guidance for every stage of each disease,” Eskenazi said, “along with essential resources and recommended contacts you’ll need along the way. In each video, caregivers learn what to expect, how to prepare for their role, essential legal and financial preparations, and much more. The videos are accompanied by fact sheets and essential resources guides.” 

Courtesy of the Long Term Care Community Coalition, nursing home family councils have a new way to meet, a free Zoom room. Council meetings throughout the country can be organized without time limits by visiting this LTCCC Zoom website.

“Caring for a Person with Alzheimer’s Disease,” a 106-page guide produced by the National Institute on Aging, is available here. 

Videos from May’s all-day “World Carers Conversation” are now accessible at the National Alliance for Caregiving’s website. The virtual global summit highlighted innovations in caregiving research, practice and policy. 

Three organizations – the Center for Consumer Engagement in Health Innovation at Community Catalyst, the LTSS Center @UMass Boston, and Grantmakers In Aging (GIA) – have initiated a project to improve support for family caregivers in 10 states. The effort seeks to build coalitions to advocate for policies that improve the lives of caregivers and those they care for. The 10 states: Texas, Arizona, Utah, Hawaii, Illinois, New York State, North Carolina, Michigan, California, and Wisconsin. More information is available from Siena Ruggeri at sruggeri@communitycatalsyt.org.

Three universities -- Emory, the University of Nevada, Las Vegas, and the University of Tennessee, Knoxville -- have initiated the RISE (Research Inclusion Supports Equity) research study. The study consists of a registry created to help ensure that the LGBTQIA+ community is included in Alzheimer’s research. The registry is for LGBTQIA+ people 18 and older who either have memory concerns or a memory loss diagnosis or who are helping care for someone with memory loss or a memory loss diagnosis. Visit TheRiseRegistry.org to register and learn more.

“There are many ways in which we can fail our patients and many reasons for these failures. We may falter in addressing the emotional needs of a patient even as we provide technically excellent care. We can neglect to offer clear explanations or leave too little time for patients to ask questions, thereby robbing them of their right to engage fully in treatment decisions. Overloaded schedules, lack of knowledge or awareness, stress, burnout, and any number of other obstacles can prevent us from providing ideal care. Yet perhaps the most fundamental way in which we can fail our patients is by not questioning the basic premise of their diagnosis before treating them. It is true that some diagnoses may be self-evident — a hip fracture or a myocardial infarction, for instance — while others, particularly in rheumatology, may be vague, difficult to confirm, and require observation of the patient over time. Nevertheless, keeping an open mind and constantly revisiting the accuracy of a diagnosis is key if we are to best care for our patients and prevent misdiagnosis. the siren’s call of heuristics and premature closure can be overpowering. When a patient’s story or physical exam seems to fit neatly into the diagnosis that we’ve been handed by a previous clinician, the impulse to go with the flow can be strong. Often, it’s only when things don’t proceed as expected that we find ourselves asking more probing questions: Why is the clinical course diverging from the common trajectory? Is this an unusual presentation of the condition I’ve been treating? Or is it something else altogether? In the meantime, the patient suffers until something different is done.” (Dr. Jason Liebowitz, the New England Journal of Medicine)

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

Contributor: Kathleen Kelly (executive director)

Production: Calvin Hu

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