With as many as 15 million people estimated to lose their medical coverage because of Trump administration policies, America has once again entered a health crossroads.
As a Huntington’s disease gene carrier who for many years hid that fact from the very system that was supposed to help me – “an absolutely absurd situation” – I rejoiced when President Barack Obama’s Affordable Care Act (ACA) guaranteed coverage for those of us with pre-existing conditions.
Like many Americans, my family and I have struggled with many other aspects of this supposed “system.”
As a three-decade observer of the HD cause, I have chronicled the fight to end genetic discrimination, improve care for the affected, and discover badly needed disease-modifying therapies.
As an HD advocate, I embrace health care as a human right.
We need more
This view echoes the American tradition of President Franklin Delano Roosevelt’s "Four Freedoms." Roosevelt, however, lost the opportunity to introduce a public health system along with the Social Security Act of 1935, to avoid stirring up opposition among doctors, as recalled by Yale University political scientist Jacob Hacker, Ph.D., in his contribution to the book The Trillion Dollar Revolution: How the Affordable Care act Transformed Politics, Law, and Health Care in America.
Other inspiration for health care as a human right has come from the United Nations’ Universal Declaration of Human Rights (partly inspired by former first lady Eleanor Roosevelt), President Lyndon B. Johnson’s Medicare and Medicaid Act, Senator Edward M. Kennedy’s legislative push for universal health care, and President Bill Clinton’s attempt to establish universal coverage.
The federal Medicare (for seniors) and Medicaid (for low-income people) programs represent actual, partial advances, and the ACA (aka Obamacare) is “arguably the most important health care legislation in U.S. history,” according to The Trillion Dollar Revolution editors Ezekiel Emanuel, M.D., Ph.D., and Abbe Gluck.
However, as that book and others point out, we need so much more – for the HD community and for all of society. I support Senator Bernie Sanders’ Medicare for All Act of 2025, co-sponsored by Reps. Pramila Jayapal and Debbie Dingell, as a necessary step to solve the country’s ongoing health care crises. Sanders first introduced this bill in 2013.
Gene Veritas, aka Kenneth P. Serbin, in a Medicare for All t-shirt (photo by Regina Serbin)
All items covered – and no co-pays
Health is first. Without it we can do nothing. The COVID-19 pandemic, and now the political dispute over health care subsidies, provide powerful examples of how people can be left without healthcare at critical moments. During the pandemic, millions of people lost their jobs and thus also their insurance coverage.
According to the congressional bill, Medicare for All would involve a national health insurance system administered by the Department of Health and Human Services (HHS). It would cover items and services to diagnose, treat, or rehabilitate a health condition, including hospitalization and prescription drugs, mental health, dental and vision services, long-term care, and reproductive care.
Medicare for All would have no co-payments. Private health insurers and employers could only offer supplemental, but not duplicative, benefits. Health insurance exchanges would disappear. The bill provides for implementation of health care provider participation, HHS administration, and payments and costs.
All U.S. residents would be included from birth. Those who are 18 or younger or 55 or older, or already enrolled in traditional Medicare, would enroll in the program starting a year after enactment of the bill. Others could also enter the program at that time.
The system works for investors, not patients
In 2023 Sanders, who lost his bid for the 2016 Democratic Party presidential nomination, published It’s OK to be Angry about Capitalism. In Chapter 5, titled “Ending Greed in the Health Care System,” he analyzes the many drawbacks of U.S. health care and outlines his plan for Medicare for All.
Here I feature the highlights of the plan. Sanders’ critique rings true with my and many other families’ frustrations with the health care system and how people think it could improve.
Health care in America is a profoundly left-versus-right political question. Ultimately, however, it must transcend politics. We all share the same biology – including the huntingtin gene, which, when it has expanded in people like me, leads to Huntington’s disease. A treatment will work independent of a person’s political outlook.
For Sanders, the basic problem is that the U.S. system “works for investors, not patients.” In 2021, during the pandemic, the health care “industry” made over $100 billion in profits, with stock prices soaring and CEOs receiving extremely generous compensation packages. It has been a “true American success story.”
However, for ordinary Americans it is a “broken system that must be completely transformed.”
America’s great political challenge is to decide whether to continue to focus on profits, or do we create a system where “every man, woman, and child in this country should, in a cost-effective way, be guaranteed quality and equitable health care regardless of their economic status.”
A ‘national embarrassment’
In the U.S. we suffer from the “national embarrassment of remaining the only major country on earth not to provide health care to all,” Sanders points out.
He cites compelling statistics. The U.S. spends $12,530 annually for each individual on health care, a total of $4 trillion, or 20 percent of GDP. The UK spends just $5,268, Canada $5,370, France $5,564, and Germany $6,731. Each guarantees health care to all.
Sadly, in terms of health care the U.S. ranks close to the bottom of the major industrialized nations in longevity, accessibility, coverage, equity, and efficiency. “We are getting a terrible return on our huge expenditure on health care,” Sanders observes
“The essential problem of our ‘system’ is that it is not really a system,” Sanders asserts. “It is a disjointed, complicated, non-transparent collection of thousands of entities dominated by powerful sources who have made health care a commodity, and who seek to gain huge profits from it.”
Sanders underscores that the goal of the “‘system’ is not to cure disease or keep people healthy” but to “make as much money as possible” for the insurance companies. Those companies “have nothing to do with the actual provision of health care.”
The six largest insurance companies made over $60 billion in profits in 2021, while the CEOs of just eight prescription drug companies made $350 million in total compensation.
Senator Bernie Sanders (from the Sanders website)
60,000 deaths due to lack of care
According to Sanders, more than 60,000 Americans die annually because of lack of health care.
The U.S. lacks sufficient number of doctors, nurses, and other health care personnel, and the country has “medical deserts.” Whereas other countries pay for medical and dental studies, in the U.S. students become “overburdened with debt.”
“Emergency rooms are providing primary care and non-emergency treatment because people are unable to find a primary care doctor of their own,” Sanders points out.
The “enormous amount of time and energy” spent on navigating the “unbelievably complicated insurance system drives many […] into despair” and leaves “health care professionals also demoralized.”
Under Medicare for All, “no more arguing with insurance agents” and “complete freedom of choice as to the doctor and hospital you want,” Sanders emphasizes.
The current Medicare program needs to expand to include dental care, glasses, and hearing aids, he argues.
Half of the country’s 500,000 annual bankruptcies “are connected to unpaid medical bills,” he writes.
Other countries’ health successes
In the United States, health insurance is typically tied to employment, unlike in other advanced countries that offer universal health coverage. “There are literally hundreds of different plans – each with different degrees of coverage and cost,” he writes.
“Americans should not be chained to a job because of health insurance,” he states. “Everyone, regardless of income, should have access to the medical treatment they need, as a human right.”
Politicians focus on the cost of health care, but not the biggest cost of all: Americans do not live as long as people in other advanced countries.
In Canada, which has a public health system and negotiations with the pharmaceutical industry, drugs cost 90 percent less.
Norway’s public health system has made for a greater sense of freedom, happiness, belonging, Sanders explains.
In the U.S. the “corporate media blackout with regard to international health care systems” and lies by politicians leave Americans ignorant about their comparative lack of well-being, Sanders notes.
A ‘vigorous debate’ on funding needed
On his Senate website Sanders has published a six-page document about funding Medicare for All (click here to read more). The plan would generate trillions of dollars.
“As the wealthiest country in the world, we have a variety of options available to support a Medicare for All single-payer health care system that guarantees high quality, affordable health care as a right, not a privilege, to every man, woman, and child in this country,” Sanders writes. “In my view, there needs to be vigorous debate as to the best way to finance our Medicare for All legislation.”
According to the document, eliminating the administrative costs of private health insurance, which are six time more than the cost of running Medicare, could save $500 billion per year. Negotiating prices with drug companies could save another $113 billion.
Employers would pay a 7.5 percent payroll tax instead of paying for employees’ insurance – a savings of $9,000 per year per worker.
Instead of paying $5,277 in premiums to private insurance companies, families would pay just $844 a year for Medicare for All.
The document proposes ending tax breaks that would become obsolete under Medicare for All. It also advocates for higher taxes on the wealthy, limiting tax deductions, closing loopholes, making the estate tax more progressive, establishing a wealth tax on the top 0.1 percent, and other measures.
Wall Street and large, profitable corporations would also pay greater taxes, and a one-time tax on the trillions in offshore profits would be levied. Corporate accounting gimmicks would also be disallowed.
Overwhelming support for Sanders’ plan
Given the debates over Obamacare and previous initiatives, the political challenge of transitioning to Medicare for All would likely be enormous. The debate would also need to include an informed discussion of the positives and negatives of universal care systems in other countries.
Sanders notes “overwhelming support” for Medicare for All in polls.
In the words of political scientist Hacker, “the newly intense push for Medicare for All has transformed the character of Washington’s perennial health care debate.”
Dr. Hacker documents the rise in support for Medicare for All both among Democrats and Republicans. Recognizing the political hurdles to this program, he advocates beginning with a “Medicare for More” strategy – expanding the current Medicare program to people younger than 65. This approach could serve as a potential step on the way to a long-term goal of delivering “quality health care to all Americans at a cost our nation can afford.”
In Congress, support for the measure has grown significantly. With no co-sponsors in 2013, the bill now has 111 in the House of Representatives and 17 in the Senate.
Sanders points out more that than a dozen medical associations support Medicare for All, including National Nurses United, with its 225,000 members the largest nurses’ union in the U.S.
The U.S. health care system “is deeply inefficient and unsustainable because it prioritizes short-term financial returns rather than long-term investments in our health,” union president Bonnie Castillo told a hearing of the Senate Budget Committee in 2022. “This leads to a system that is unaffordable for our country and for our patients.”
The current system has hundreds of billions in administrative costs, Sanders notes. Medicare for All would eliminate most of these costs, aiding “the business community and our overall economy by ending the costly and uneven system of employer-based health care.” Big companies would also benefit by no longer being at a disadvantage with countries that have universal health coverage.
“Scientists will be freed to concentrate on developing breakthrough drugs, rather than tailoring their research so that pharmaceutical firms can maintain record profits,” Sanders adds.
In the HD community and beyond, as we ponder the traumas experienced by an inadequate health care system, let us join hands to advocate for Medicare for All.
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