The current debate over the American Health Care Act (AHCA) and its implications for the Medicaid program goes far beyond CBO scores and procedural maneuvering for the more than five million Americans living with Alzheimer’s, a progressive brain disease that is claiming the lives of women and minorities at alarming rates.
These folks spend more time worrying about remembering the names of their sons and daughters than about the political machinations of Senate leadership. But in the coming weeks, the House and Senate will determine their ability to access vital medical services and receive quality care that often requires intensive and around-the-clock assistance.
Congressional leaders must stand by these Americans and their more than 15 million dedicated caregivers by protecting and building on state Medicaid expansion, a critical resource for families forced to the brink of bankruptcy by a disease that can cost between $41,000 and $56,000 annually.
When President Lyndon Baines Johnson established Medicaid in 1965 with the signing of the Health Insurance for the Aged Act, he had probably never heard of Alzheimer’s, yet his actions and words on that day extended a lifeline for millions touched by the fatal disease, “No longer will older Americans be denied the healing miracle of modern medicine…No longer will young families see their own incomes, and their own hopes, eaten away simply because they are carrying out their deep moral obligations to their parents, and to their uncles, and their aunts.”
Fifty two years later, the Senate’s newly released draft bill (H.R. 1628) confirms what many feared: a drastic restructuring of Medicaid through deep, long-term cuts that could force states to reduce medical coverage for the nearly one in five Americans covered by the program. If enacted, the AHCA would represent the most significant rollback of LBJ’s Great Society programs in their history, and would have tremendous consequences for low-income Americans struggling with Alzheimer’s and related dementias.
Alzheimer’s is hugely expensive, generating approximately $259 billion in direct and indirect costs annually, 67 percent of which is born by Medicare and Medicaid. An analysis by the Kaiser Commission on Medicaid and the Uninsured (KCMU) found that one in four individuals living with Alzheimer’s or a related dementia rely on Medicaid coverage over the course of a year. The program covers a range of services that Medicare does not, including home- and community-based assistance like bathing, dressing, preparing meals, and managing medication. In some states, Medicaid covers premiums, deductibles, copayments, and out-of-pocket costs for acute care services.
This is critical relief for low-income families touched by Alzheimer’s, juggling the demands of caregiving while making ends meet. Nearly 80 percent of Medicaid beneficiaries with Alzheimer’s live below the poverty line. According to family caregiver Daisy Duarte, “I was forced to close a successful business to provide the full-time care my mom’s needs. Now any money I make as an hourly worker, along with her meager pension, go to Alzheimer’s related costs. It’s certainly not something we planned for financially or emotionally.”
Some attempt to argue that Medicaid is a bloated and inefficient government entitlement, but spending per beneficiary is considerably lower than private insurance and research shows that without the types of support provided by Medicaid, many would turn to the emergency room and institutionalized care — far more costly alternatives to home- and community-based care.
With the number of Americans living with Alzheimer’s projected to grow to approximately 8 million by 2030, Medicaid will be critical for communities of color disportionately impacted by the disease.
African Americans are twice as likely, and Latinos are 1.5 times more likely than white Americans to develop Alzheimer’s, and together these communities make up 50 percent Medicaid beneficiaries. Given the wealth gap between these communities and white Americans, Latino and African American families touched by Alzheimer’s are less financially equipped to cover the cost of care associated with the disease, and Medicaid often represents the only source of assistance available. In fact, approximately three-quarters of racial minorities with dementia spend down their savings to cover care costs.
Lawmakers are right to want to continue to strengthen our healthcare system — a system that could and should work better for millions of families with limited access to quality care, insurance options, and innovative treatments for diseases like Alzheimer’s. Yet policymakers should ask themselves this question before acting rashly: will a radical change to Medicaid better prepare us to address our nation’s Alzheimer’s crisis?
Given our nation’s goal of effectively treating or curing Alzheimer’s by 2025, this question should be top-of-mind for leaders from both parties throughout the health reform process. Recent bipartisan action in Congress to increase Alzheimer’s funding at the National Institutes of Health to approximately $1.4 billion demonstrates our ability to work across the aisle to deliver results for families touched by Alzheimer’s.
As a vote on the AHCA in the Senate rapidly approaches, we must remind Senators like Shelley Moore-Capito (R-W.Va.), Susan CollinsSusan CollinsGOP Medicaid cuts will be disastrous for millions with Alzheimer’s Rocky rollout for Senate healthcare bill Overnight Healthcare: Latest on Senate healthcare bill | Four conservatives say they’ll oppose | Obama slams bill | Health groups offer scathing criticism MORE (R-Maine), and Lisa MurkowskiLisa MurkowskiGOP Medicaid cuts will be disastrous for millions with Alzheimer’s Overnight Healthcare: Latest on Senate healthcare bill | Four conservatives say they’ll oppose | Obama slams bill | Health groups offer scathing criticism The Hill’s Whip List: Senate ObamaCare repeal bill MORE (R-Alaska), all long-standing champions in the fight against Alzheimer’s, of Medicaid’s critical importance to millions of vulnerable, low-income Americans impacted by this devastating disease.
Jason Resendez is executive director of LatinosAgainstAlzheimer’s, a network of UsAgainstAlzheimer’s, and a participant of the Allies Reaching for Community Health Equity Public Voices Fellowship with The OpEd Project. You can follow him on twitter: @jason_r_dc.
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