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Disease, Disability, and Paternalism in the Fight for Medicare for All

Medical Paperwork
Maggie Mills is a single-payer health care activist living with multiple sclerosis whose writing has been published in Common Dreams and LA Progressive. Mills is an artist and member of Grizzly Grizzly, a non-commercial, artist-run exhibition space in Philadelphia. She is an assistant professor of art at Cedar Crest College.

I have multiple sclerosis (MS), a disease in which the immune system recognizes the central nervous system as an invader and attacks it, slowly or quickly eroding its ability to communicate. Even in its kinder stages, MS can cause what seems like an endless list of miserable symptoms, including profound fatigue, pain, dizziness, numbness, vision loss, muscle spasticity, tremors, weakness, incontinence, insomnia, speech and cognitive problems, and limited mobility. At its worst, MS causes swallowing and breathing difficulties, blindness, paralysis, and death.

Of those living with MS in the United States, 75 percent suffer significant financial hardship. Most of us cannot work due to disability within ten years of diagnosis and rack up more than four million dollars in medical expenses over our lifetimes. Because of the outrageous cost of our health care, many of us are forced to cut spending on necessities like food and housing, forego testing and treatment, or declare medical bankruptcy. Among medical bankruptcies, those caused by treatment for MS are associated with the highest out-of-pocket costs of any condition.1

I currently work full time and need to do so to keep my employer-based insurance. But, in the not-so-distant future, working full time will make me too sick and disabled to continue to do such work and I will lose this employer-based insurance. I will then be afforded only the scraps of the U.S. for-profit health care system. This system is one that will force me to live in poverty to qualify for even the most basic disability coverage. This system is one that preys on the most vulnerable so that someone, somewhere, can make a profit that is completely divorced from the human beings who gasped for air during their unnecessarily final moments.

The U.S. for-profit health care system is so profitable, in fact, that it spares no expense to ensure that our politicians parrot industry propaganda. The health care lobby is not just pulling the strings on Republican policy. According to the Center for Responsive Politics, Democrats raked in 63 percent of the lobby’s $452 million in individual and political action committee contributions in the 2020 election alone. Including shady soft money contributions, the health care industry spent a total of $639 million on political influence in the most recent election cycle. Since the election, the president and Congress have reaffirmed their fealty to the health care lobby by subsidizing the Consolidated Omnibus Budget Reconciliation Act rather than guaranteeing health care for all of us. After all, no candidate accepted more money from the health care lobby in the 2020 election than Joe Biden.2

Much of the health care industry’s propaganda revolves around the allegation that expanded Medicare for All would be too expensive to implement. In reality, Medicare for All could save us $650 billion annually, according to the Congressional Budget Office’s estimate. More than one third of our health care dollars currently pay the administration costs of multiple for-profit payers. Single-payer health care could instead use these dollars to pay for our, well, health care! Industry propaganda also includes the claim that the “freedom” to choose from a list of predatory cost-sharing scenarios, and thus contribute to insurance and pharma executives’ excessive profits, means better health outcomes. But the United States ranks dead last in equity and access to health care among the eleven wealthiest nations (the rest of which provide universal coverage to their citizens) according to the latest Commonwealth Fund study. A staggering one third of COVID-19 deaths in the United States thus far are tied to the lack of insurance endemic to our for-profit system. And a pre-pandemic study by Yale epidemiologists estimated that 68,000 Americans—parents, children, friends—die annually due to lack of health care.3

This propaganda’s sole purpose is, of course, to protect for-profit health care’s wanton excesses. For this for-profit health care to be really profitable, the poor, sick, and disabled people must be relegated to the underfunded web that is Medicare, Medicaid, and Social Security Disability—and, consequently, to lives of unnecessary suffering, poverty, and early death. This cruel truth is one of the country’s most shameful displays of unfettered capitalism and a damning indictment of the weak-kneed, corporate-sponsored politicians who choose health care lobby dollars over human life.4

To be eligible for our existing version of Medicare, adults under 65 who can no longer work due to disease or disability must first qualify for Social Security Disability Insurance (SSDI). It is no easy task. Initial claims for SSDI are denied more than 70 percent of the time and claims are often denied multiple times, delaying or preventing treatment for the most medically needy. When SSDI applications are accepted, the sick and disabled have to wait an additional two and a half years, at best, to be eligible for Medicare.5

Even after meeting the difficult requirements to qualify, the average SSDI payment for disabled people who have previously paid into the system is just $1,259 per month. But many disabled people receive far less than the average payment or are not eligible for SSDI at all. For those “limited resource” people, the maximum federal Supplemental Security Income (SSI) payment is just $794 per month, or $9,528 to survive on annually.6

Meanwhile, our current version of Medicare does not even cover any long-term care. Here in Pennsylvania, the sick and disabled who need long-term care must pay an out-of-pocket average of $4,500 per month for a home health aide, or $10,000 per month for a semi-private room in a nursing home, the latter being more than the maximum SSI payment for an entire year. The only alternative for the sick and disabled is to “spend down” their assets to qualify for care through a Medicaid-approved facility.7

For the sick and disabled who rely on Medicaid, the program’s qualifying income cap of $17,130 and its $2,000 asset limit mean living in poverty while struggling to address complex and expensive health care needs. Disabled Pennsylvanians can expect to wait seven years after qualifying for Medicaid’s home and community-based waivers to receive support services outside of an institution, and there are currently 14,647 Pennsylvanians waiting for these services. Because Medicaid pays providers less for treatment than either Medicare or for-profit insurance, fewer providers are willing to accept Medicaid patients. These patients have greater difficulty accessing specialty care than their insured peers. This kind of inequity and inaccessibility is foundational to our for-profit system. In fact, one in three people with disabilities between the ages of 18 and 44 lack a consistent health care provider and have unmet health care needs due to cost. And half of those living in long-term poverty in the United States are people with disabilities.8

Sick and disabled people must navigate this system while being sick and disabled. There are no additional programs to catch the sick and disabled as they fall through the gaps in our so-called safety net. The cruelty of limiting both income and quality of care for those living with disease or disability cannot be overstated.

We should be furious to learn of the cruelty that for-profit health care inflicts on the sick and disabled. We should be furious to learn that expanded Medicare for All, or single-payer health care, could end this cruelty, but that our politicians have instead chosen to uphold for-profit health care.

Alas, the U.S. public has been lulled into accepting this systematic sacrifice of sick and disabled people by the empty promises of health care reform incrementalism. Though incrementalism is advertised as the “reasonable” strategy by lobby-bought members of both political parties, incrementalism preserves and protects the for-profit system using language taken straight from the health care industry’s spin machine. Many who consider themselves allies of the sick and disabled have adopted this propaganda as a pragmatic policy position. But despite the health care lobby’s obfuscations, incrementalism is nothing more than a guise for paternalism and ableism.9

Incrementalism reduces the discussion on Medicare for All to an intellectualized abstraction; an unending conjecture that is incongruent with the urgency of ending the unnecessary suffering of the sick and disabled at the hands of our for-profit system. The paternalists who advocate for incrementalism demand that sick and disabled people stay small and quiet in our requests not to be killed off for profit. They deem any strategy for achieving health care equity that deviates from the “proper channels” of incrementalism to be unreasonably emotional. In fact, the terror and rage that sick and disabled people feel are the result of lived research that is essential to crafting meaningful policy. Being sick or disabled in the United States and surviving to complain about it for another day is policy expertise unto itself.

In talking over, and for, sick and disabled people, paternalists reinforce the idea that we lack the capacity to act rationally for ourselves, and that our opinions are not as informed as the well and abled who speak in our stead. The paternalism that drives incrementalist policy relegates us to an inferior status. It perpetuates the violence that for-profit health care inflicts on us as less-than-full members of society. And that, quite simply, is ableism.

Of course, the for-profit system and the politicians in its service specialize in peddling incrementalism, and in rationalizing the paternalism and ableism it requires. This system portrays sick and disabled people as inured to the pains not only of disease and disability, but also to those of poverty and inaccessibility. This system conditions the well and abled to believe that resources are far too scarce to end sick and disabled suffering today, but that faith in incrementalism will of course bring an end to the suffering someday.

Twenty-six percent of Americans identify as disabled, and 60 percent identify as chronically ill. There is thus a great deal of overlap with other marginalized groups, and a huge range of experiences and needs within the community. I recognize my many privileges within this community and will not speak for those with experiences that are different from my own. Their experiences should be valued, and their voices should be amplified. Because for all of us, the suffering the system inflicts is an unnecessary cruelty and a for-profit act of violence. This is an emergency. We do not have time for the false promises of incrementalism. True allies do not tell victims of violence to quietly wait as they endure it.

The sick and disabled need true allies, true co-conspirators. We need allies who hold our politicians accountable, both Democrats and Republicans, for accepting money from the health care industry at the expense of human suffering. We need allies who value the sick and disabled as expert strategists who speak to the needs of the community; allies who understand and amplify our urgency and our anger. We need collaborators who will actively and relentlessly fight for universal, single-payer health care—comprehensive care for all, regardless of income or health status. We need solidarity, public demonstration, and direct action. Our house is on fire.

Medicare for All, NOW.

Notes

  1. New Study Reveals 75% of Multiple Sclerosis Patients Face Financial Toxicity,” Harvey L. Neiman Health Policy Institute, September 8, 2020; Pat Anson, “Over 75% of MS Patients Face Financial Hardship,” Pain News Network, September 14, 2020.
  2. Olivier J. Wouters, “Lobbying Expenditures and Campaign Contributions by the Pharmaceutical and Health Product Industry in the United States, 1999–2018,” JAMA Internal Medicine 180, no. 5 (2020): 1–10; “Health: Long-Term Contribution Trends, Totals,” OpenSecrets, accessed October 19, 2021; “Health: Top Recipients, 2020,” OpenSecrets, accessed October 19, 2021.
  3. Matt Bruenig, “CBO: Medicare for All Reduces Health Spending,” People’s Policy Project, December 11, 2020; Phill Swagel, “How CBO Analyzes Proposals for a Single-Payer Health Care System,” Congressional Budget Office, December 10, 2020; Linda Carroll, “More Than a Third of U.S. Healthcare Costs Go to Bureaucracy,” Reuters, January 6, 2020; Robert Doherty et al., “Envisioning a Better U.S. Health Care System for All: A Call to Action by the American College of Physicians,” Annals of Internal Medicine, January 21, 2020; Eric C. Schneider et al., Mirror, Mirror 2021: Reflecting Poorly, Health Care in the U.S. Compared to Other High-Income Countries (New York: Commonwealth Fund, 2021); Eagan Kemp and Kate Thomas, Unprepared for COVID-19: How the Pandemic Makes the Case for Medicare for All (Washington DC: Public Citizen, 2020); Alison P Galvani et al., “Improving the Prognosis of Health Care in the USA,” Lancet 395, no. 10223 (2020).
  4. Caroline F. Plott, Allen B. Kachalia, and Joshua M. Sharfstein, “Unexpected Health Insurance Profits and the COVID-19 Crisis,” JAMA 324, no. 17 (2020): 1713–14.
  5. “Chart 11. Final Outcome of Disabled-Worker Applications, 2008–2017,” “Annual Statistical Report on the Social Security Disability Insurance Program, 2018,” Social Security, accessed October 19, 2021.
  6. Claire Boyte-White, “What Are the Maximum Social Security Disability Benefits?,” Investopedia, July 30, 2021; “Understanding Supplemental Security Income SSI Income—2021 Edition,” Social Security, accessed October 19, 2021.
  7. Cost of Care Survey,” Genworth, accessed October 19, 2021.
  8. Medical Assistance General Eligibility Requirements,” Department of Human Services, Pennsylvania, accessed October 19, 2021; Kevin H. Nguyen and Benjamin D. Sommers, “Access and Quality of Care by Insurance Type for Low-Income Adults Before the Affordable Care Act,” American Journal of Public Health 106, no. 8 (2016): 1409–15; “Disability Impacts All of Us,” Centers for Disease Control and Prevention, accessed October 19, 2021; “Highlighting Disability / Poverty Connection, NCD Urges Congress to Alter Federal Policies that Disadvantage People with Disabilities,” National Council on Disability, October 26, 2017.
  9. Ben Palmquist, Parroting the Right: How Media and Polling Company Adoption of Insurance Industry Spin Warps Democracy (New York: Partners for Dignity and Rights, 2019).
2021, Volume 73, Number 7 (December 2021)
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