Health care as a human right: considering the Medicare for All plan

  

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.

Are pre-existing conditions returning, and Obamacare ending?

Nine years ago, with passage of the Patient Protection and Affordable Care Act (ACA) under Democratic President Barack Obama, I celebrated with an article titled “Good-bye, pre-existing conditions!”

Widely known as Obamacare, the ACA prohibited insurance companies from denying coverage to people with pre-existing conditions, a widespread practice that severely endangered the genetically unlucky. It also made health insurance available to millions of people previously unable to obtain it, and it extended family coverage for children up to age 26.

In 2012, the U.S. Supreme Court upheld Obamacare by a 5-4 decision, with conservative Chief Justice John G. Roberts Jr. joining the court’s four more liberal judges. However, with the long political fight over the ACA heating up again, and a more conservative Supreme Court, Obamacare could be abolished if the court agrees with right-wing challenges to it.

Along with many other disease groups, the Huntington’s disease community could face declining quality of care, increased costs, and renewed discrimination and stigma.

Hiding the central fact of my health

I am an HD gene carrier.

In my 2010 article on the ACA, I wrote that, because of the insurance restrictions for pre-existing conditions, I had “never used my health coverage to help me deal with the central fact of my health: my gene-positive test for this horrible brain disease.” I described the complicated and expensive lengths I went to in securing alternative assistance with HD.

Concealing my HD status from my health plan had produced “an absolutely absurd situation,” I observed in a 2019 HD Awareness Month podcast. People like me used to hide our conditions because we feared losing our coverage.

“Thank goodness for the Affordable Care Act,” I commented. The ACA “got rid of this nonsense about pre-existing conditions.”

Indeed, the enactment of the ACA had helped convince me to go fully public about my HD status in 2012 and inform my health plan of my HD status (click here to read more).

In all, this has made me a more effective HD advocate – and more organized and confident regarding my daily fight to stave off symptoms.

New attacks on the ACA

The Republican Party has officially opposed Obamacare, but – because of its popularity – failed to repeal it even when the party controlled both houses of Congress under President Donald Trump in 2017 and 2018. (The 2017 major tax bill signed by Trump did eliminate, starting this year, the ACA penalty for not having insurance.)

However, the Trump administration has carried out a multi-front attack on the ACA. Among other things, it has promoted insurance plans that do not comply with the protection for pre-existing conditions, and it has allowed states to impose work requirements for Medicaid recipients. America’s number of uninsured had fallen to record lows by the end of the Obama administration in early 2017, but the number has started to rise again.

Then, on March 25, Trump’s Department of Justice filed a brief supporting a Texas federal judge’s December 2018 ruling that the entire ACA was unconstitutional.

On May 22, California Attorney General Xavier Becerra, a Democrat and one of the lead defenders of the ACA, joined 20 other attorneys general in filing a brief in defense of the ACA in the U.S. Court of Appeals for the Fifth Circuit in New Orleans.

“The Trump Administration has made clear that it will not defend Americans’ healthcare and the law that tens of millions of Americans across the country depend on – so our fight continues,” Becerra stated in a press release.

The appeal will be heard on July 9. Depending on the ruling, the case could go to the Supreme Court. With two Trump appointees, the Supreme Court has become potentially more hostile to the ACA.

HDSA’s support

The Huntington’s Disease Society of America (HDSA) supports the ACA.

“HDSA believes that any attempts to repeal or dismantle the ACA without providing a replacement plan that maintains [the] protections and benefits for Americans impacted by complex and chronic diseases like HD is unacceptable,” the HDSA national office wrote me in a June 10 e-mail. “HDSA is committed to protecting access to healthcare for individuals impacted by HD.”

According to HDSA, the ACA “has created safeguards for vulnerable Americans who are impacted by chronic, complex diseases like HD from being denied healthcare coverage or being purposefully priced out of the healthcare market.” The ACA has “provided important avenues to access care for families with HD and we believe that they need to be protected.”

Thus, without the ACA or a robust equivalent, HD families could face greater difficulties in finding quality, affordable care.

We must not return to the ‘HD closet’

In addition to supporting HDSA and other advocacy organizations, HD family members can contact their state attorney general to support or join the appeal of the anti-ACA Texas ruling.

In California, where I reside, Becerra has sent several recent e-mails to political supporters asking them to sign a petition in support of the ACA. The e-mails have also asked for donations to help support the defense of the ACA.

According to Becerra, 133 million Americans have pre-existing conditions. He calls the ACA a “life-saving law.”

(The debate over the ACA has also helped stimulate calls by many of the 20-plus 2020 Democratic presidential contenders for a “Medicare for All” program. The debate is also related to the anti-science agenda of the Trump administration. I hope to address these issues in future articles.)

As I wrote in 2010, the passage of the ACA “brought a new beginning for the Huntington’s disease community – and for everybody in America.”

We must not regress to a system that forces people to hide in the "terrible and lonely HD closet," as so many of us did in the past.

Braving bioethical challenges: the importance of Huntington’s disease

Huntington’s disease, one of the first conditions for which a predictive genetic test was developed, spotlights the psychosocial ramifications of the Genomic Era.

In addition to the profound impact of HD on people’s health and social well-being, the difficult decisions involved in genetic testing have created new ethical challenges.

Over the past few decades, the rapid advance of medical and scientific research has caused ethics – our standards of right and wrong and the study of those standards – to expand into bioethics.

Bioethics is a vast topic. Georgetown University, for example, has an entire library dedicated to research on bioethics, and a number of other universities have centers dedicated to the subject.

Biomedical innovation puts bioethics into a seemingly constant state of flux.

The passage of the Genetic Information Nondiscrimination Act of 2008 (GINA) and the Affordable Care Act of 2010 (Obamacare) are two prominent examples of how society has sought to adapt to new biomedical realities and ethical consequences. GINA seeks to protect individuals from new forms of discrimination made possible by advances in genetics, while Obamacare aims to make health care more inclusive as it undergoes profound transformations.

HD families like mine have lived on the frontier of bioethics, often constructing new, personal solutions to the predicaments posed by the disease.

Understanding our contribution to this historic process helps us appreciate our part in the overall effort to combat disease.

New tools, new challenges

I addressed the topic of HD and bioethics at the invitation of the graduate program in bioethics at the Centro Universitário São Camilo, a private Catholic college, in São Paulo, Brazil, during a presentation on September 21.

About 50 people attended the event, including at least a dozen members of the HD community and also Dr. William Saad Hossne, the program’s founder, described by one writer as “the guardian of bioethics” in Brazil. Started in 2004, the program was the first of its kind to receive official sanction.

Gene Veritas speaking at the Centro Universitário São Camilo

Focusing on how the new “tools” of medicine and biotechnology have deepened our understanding of human biology, I explained how my family braved three predictive tests in just five years: my mother’s confirming test for HD in 1995, my own gene-positive result in 1999, and our daughter Bianca’s negative test while still in the womb shortly afterward.

All of these tests brought potentially fatal news: a positive test for the HD mutation meant a 100 percent chance of developing the untreatable disorder.

“Because Regina and I wanted to have children, I also had to think about whether I wanted to get tested,” I told the audience, speaking in Portuguese.

Rather than following my initial impulse to get tested immediately after learning of my mother’s results, I waited for several years. As I explained to the audience, my mother’s geneticist had warned me of the possibility of discrimination by my employer, health plan, or insurance companies.

As demonstrated by the discussion around GINA, discrimination has become a major concern of bioethics.

The risks in having a family

“I did the test, and, unfortunately, I tested positive for Huntington’s,” I continued.

I showed the audience slides illustrating the varying number of CAG repeats (part of the “alphabet” of our DNA) on the huntingin gene. People normally have 10-26 CAG repeats on this gene. An expansion of the gene to 40 repeats signals that a person will develop HD. The tests for both my mother and me showed 40 repeats.

Research shows that the higher the number of repeats, the earlier the disease usually starts, with juvenile onset HD becoming possible if the repeats exceed 80, although even fewer repeats have caused this form of the condition.

Because of the instability of the HD-afflicted male’s huntingtin gene in the reproductive process, he can pass on a much higher number of repeats and possibly trigger juvenile HD.

“Having a family becomes like the Way of the Cross,” I said with pain in my voice. “In our case, because we wanted to have a family – and that’s why I got tested when I did – we faced a third test. First my mom’s. Then mine. Then a third one: of our potential child.

“A low number of repeats: no possibility of having the disease. As the number of repeats rises, the possibility of the disease increases…. The more the repeats, the earlier the disease manifests itself, to the point where five to ten percent of the cases are juvenile Huntington’s.”

I pointed on the slide to a picture of Olivia Ruggiano, a 12-year-old girl who died of juvenile HD in 2012.

“In my case, with 40 repeats, I could pass on to another person 45 or 55,” I continued. “There’s a case where a father has 50 some repeats and the children have 80 or 90 repeats. That’s when juvenile Huntington’s happens.”

Very serious questions

I then delved into the heart of HD and bioethics as I had not done before in such detail in a public presentation.

“A family that faces that situation is suddenly confronted with two very serious questions,” I said. “If they are thinking of the possibility of aborting the fetus, at what number of repeats would they abort? If you’re a couple with the father carrying the gene and the mother gets pregnant, and you’re afraid that the child could have the gene, you can test the child in the uterus to see what type of gene it has, whether it’s normal or abnormal. If it’s abnormal, you can know exactly how many repeats it has.

“And that’s where a question of bioethics is forced upon people. Are you going to have that child – or not? Are you going to face a situation of death at the age of nine or 12? Or are you going to end the pregnancy?”

I explained that, living in California, Regina and I faced the additional burden of raising a potential child without familial support. My father dedicated himself to caring for my mom back in my home state of Ohio, while Regina’s parents lived in far off Rio de Janeiro.

“How would Regina be able to care of me, a sick person in his forties or fifties, and also a child with symptoms or dying early?” I asked, pointing again to the picture of Olivia.

“These were the questions we dealt with and reflected on as we embarked upon the pregnancy,” I observed. “Today there is a method for avoiding that question, with the implantation of healthy embryos. In 1999, that technique didn’t exist. The only way was to get pregnant, then test.”

Fighting on other fronts

The day our geneticist called with the news of Bianca’s negative test in the womb was the happiest of our lives to that moment.

The next slide in the presentation showed two pictures: one of Regina, our gene-negative baby Bianca, and I together in the hospital the day of her birth, another of me clutching our “miracle baby” close to my face.

That terribly difficult and drawn-out part period forms just one part of our journey with HD.

As I pointed out to the São Paulo audience, HD families live the reality of bioethics in numerous other ways: by combatting the stigma and discrimination associated with the condition, negotiating intra-family conflicts arising from the disease, advocating for new and controversial treatments like stem cells, struggling to obtain various kinds of insurance, facing financial ruin, and dealing with the lack of care facilities and personnel specialized in HD.

Sadly, I also reminded that audience of the high rate of suicide among HD-affected people. Euthanasia is another bioethical issue that comes into sharp focus for HD families.

Emotional testimony

After my 85-minute presentation, the audience offered commentary and questions for another 50 minutes. The emotional testimony from members of HD families and the poignant questions from the audience further underscored the seriousness of the bioethical issues surrounding HD and confirmed their global nature.

One man in his 30s cried as he recalled how his sister, who has the involuntary movements typical of HD, was called a “drunk” by the children at her 12-year-old daughter’s school.

A middle-aged woman told how her brother, a computer programmer, lost his job after his performance declined significantly. Despite his obvious cognitive difficulties and aggressive behavior, two telltale signs of HD, both a caseworker and government psychiatrist working for the Brazilian social security system denied him public benefits.

“The psychiatrist said he was able to work and had no problems whatsoever,” said the woman, who quit her job to care for her brother at home.

The family appealed the decision, but was denied again. They have sued in an attempt to obtain benefits.

At the last hearing in August, held before a federal judge, the caseworker, still unaware of how HD symptoms are manifested, asked whether the HD man drank alcohol.

At my talk, the HD man’s sister referred to government doctors handling the request for benefits as “ignorant” and “stupid.” The case is still pending.

“I’m angry and worn out,” she said, adding that she is attempting to bring the case to the attention of the Brazilian media. “We need help.”

I noted that in the U.S., HD advocates are working towards passage of a federal law to oblige the Social Security Administration to remedy a similar situation in which an inaccurate, outdated definition of the disease has kept many afflicted individuals from obtaining assistance.

Proactive involvement and the hope of treatments

Another, more positive area of bioethics involves participation as subjects in research studies and clinical trials. On this front HD people, gene carriers, untested at-risk individuals, and other family members are taking a proactive approach to contributing to the search for treatments and a cure, usually in a context of high bioethical standards.

Ultimately, allowing HD patients to manage their symptoms with effective remedies, or perhaps someday even curing the disease, will obviate many of the bioethical challenges, although new ones surely will arise – for example, as gene-positive people clamor to try untested drugs.

Our community can and should continue to show leadership on these issues.

For now, as I concluded my presentation, “It’s time to conquer Huntington’s!”

(The many Brazilian readers of this blog can watch my presentation and the Q & A in the videos below.)

 


A Doença de Huntington e a Bioética: Um Estudo de Caso from Gene Veritas on Vimeo.

A Doença de Huntington e a Bioética: Debate sobre a Palestra de Gene Veritas from Gene Veritas on Vimeo.

One year out of the terrible, lonely Huntington’s disease closet

Today marks one year since I definitively exited the terrible and lonely Huntington’s disease closet.

On November 4, 2012, my article “Racing Against the Genetic Clock” appeared online in the The Chronicle of Higher Education, the first time I shared my story in a mainstream publication (click here to read the article). It was also published in the November 9, 2012 print edition.

By revealing publicly that Gene Veritas was Professor Kenneth P. Serbin, a historian who specializes in Brazil, I took one of the most important steps in my 15-plus years of HD advocacy.

I no longer hid the potentially devastating truth about my genes: I carry the mutation for Huntington’s and will inevitably develop its deadly symptoms.

After guarding the secret of my risk for HD ever since my mother’s diagnosis in late 1995, I could fully engage in the battle against, as I wrote, “the stigma and fear surrounding Huntington’s and other neurological disorders. In so doing, I also hope to help galvanize increased support for brain research.”

I also could finally begin to integrate my academic career with my HD advocacy and my growing, profound interest in the history of science, technology, and medicine.

Gene Veritas (aka Kenneth P. Serbin) (photo by Bianca Serbin)

Big strides

Over the past year, I have made important strides in my advocacy.

With the publication of my family’s story, many people within my circle of friends and professional colleagues learned in detail about the challenges posed by orphan and genetic diseases, not just the symptoms but the serious social implications.

For the first time, I publicly raised funds for the cause, bringing in more than $16,000 to the Serbin Family Team at the April 14 Team Hope Walk of the San Diego Chapter of the Huntington’s Disease Society of America (HDSA).

At the University of San Diego (USD), my employer, I spoke openly about Huntington’s disease. Through colleagues I even learned of other families in the area facing the risk of HD. (Click here to read the feature story on me and my family on the university’s website.)

In the spring, I participated in the first meeting of faculty members aiming to establish an undergraduate concentration in medical ethics. I’ve also discussed HD and genetic testing with a USD biologist studying the ethical dilemmas raised by genetic practices.

The highlight of my academic work this year took place at the World Congress on Huntington’s Disease from September 15-18 in Rio de Janeiro, Brazil. I gave a presentation on coping with HD. I also reported on the event and posted more than 30 videos I had shot. In São Paulo, on September 21, I delivered a speech on HD and bioethics.

As I wrote, “I felt vindicated in my decision to go fully public about HD … and meld my professional and personal lives with my advocacy.”

Concern about health care

On October 16, as the U.S. Congress voted to end the two-week government shutdown resulting from Tea Party Republicans’ attempt to block Obamacare, I published a blog article describing how I had revealed my gene-carrier status to my health plan.

At the suggestion of one of the leaders of the HD movement, I sent a copy of my article to Speaker of the House John Boehner, who has dueled politically with President Barack Obama over the Affordable Care Act.

“I am dismayed at how the national debate over health care has taken an unhealthy and highly unproductive turn,” I wrote to Boehner. “Having seen my mother succumb to Huntington’s disease, and facing the threat of that disease myself, I have witnessed firsthand, and experienced, the terrible drama of our inadequate system of care for people with neurological and other disorders that carry a large stigma…. Please do your utmost to bring better care for all Americans and create a more productive national dialogue.” (So far I haven’t gotten a response.)

On October 20, the Brazilian newspaper O Estado de S. Paulo published a Portuguese-language opinion piece by me discussing my message to Boehner and the embarrassing behavior of the U.S. political leadership. I wrote that citizens like me were anxious to see the country get back on track with its economy and health care system.

A scholar-advocate

Last night, I spoke to a good friend and long-time professional colleague who provided frequent support over the past two-and-a-half years as I prepared to make my definitive exit from the HD closet.

“Tomorrow is the first anniversary of my article in the Chronicle,” I told him.

“Are you glad you did it?” he asked.

“Of course!” I responded.

“And the sky didn’t fall!” he rejoined.

Indeed, the days of the terrible and lonely HD closet are now in my past.

The memories, however, are still fresh. And when the nation debates health care as it did again recently during the shutdown, I fear a return to that painful period of my life in which I felt compelled to hide the threat of HD.

I also know that thousands of HD families around the world remain in the HD closet – because of lack of knowledge about the disease, stigma, fear, and the devastating symptoms.

I now refer to myself as a “scholar-advocate.”

Very soon I plan to even better integrate my identity, setting up an e-mail signature with both my real name and pseudonym and links to HDSA, my blog, and my Chronicle article.

With this new dual public identity, I will forge ahead as I seek to promote collaboration in the HD community, greater awareness about the disease and its many challenges, and an end to the fear of sharing our stories.

The end of fear and exclusion: informing my health insurance plan about the risk of Huntington’s disease

In my nearly two-decade journey with Huntington’s disease, I hid my at-risk status not just from nearly all but my closest confidantes, but also from my health plan.

My warily guarded secret exemplifies the deep-seated fears many in the HD community have about denial or loss of insurance coverage. I regularly read or hear about untested at-risk individuals or gene carriers who worry about this issue.

To protect myself from losing coverage in the event of a job change or another of life’s unforeseen challenges, I instead have relied all these years on the Huntington’s disease clinic at the University of California, San Diego (UCSD) hospital. There I have paid out of my own pocket for consultations and established a medical record completely separate from all my other health records.

As a university professor, I have enjoyed the benefits of group coverage, from which it is at least theoretically more difficult to exclude people who have genetic and/or pre-existing conditions. Nevertheless, I have always erred on the side of absolute security, never knowing what life might bring, especially in the period before I obtained tenure and therefore had some but not total job security.

Over the past two months, however, I have initiated the process of informing my health maintenance organization (HMO) that I carry the mutation for HD.

“This is all so ironic!” I said the other day to my wife Regina, the very first person I had told about HD after learning the day after Christmas 1995 of my mother’s diagnosis and my own risk for inheriting the mutation. “I’m now doing what I've avoided all these years.”

Fearing exclusion, I had not resorted to the very system supposedly designed to help me.

Feeling liberated – again

Once again – as I did in definitively exiting the terrible and lonely “HD closet” on November 4 of last year – I feel liberated.

I began to apprise my HMO of HD on August 9 with a visit to my primary care doctor, who has treated me for about six years and with whom I have developed a comfortable and cordial relationship.

I had made the appointment to address a benign skin problem and other minor issues. Finally, at the end of my list of concerns, I came to the most important item. I had rehearsed the scenario in my mind many times. I decided to go right to the point.

Almost matter-of-factly, yet with the feeling of a huge wall coming down from around me, I told him that my mother had died of Huntington’s disease and that I had tested positive.

The doctor maintained his usual professional calm. At first, I couldn’t tell whether HD represented for him just another item on my list or something really significant.

From the ensuing conversation, I was reassured to learn that he clearly knew about Huntington’s disease. He also knew the work of the UCSD HD clinic. In fact, he had previously worked several years in another sector at UCSD.

I handed the doctor a printout of my article “Racing Against the Genetic Clock,” published last November in The Chronicle of Higher Education. He promised to read it soon.

My article, written “to combat the stigma and fear surrounding Huntington’s and other neurological disorders” and “to help galvanize support for increased brain research,” revealed my HD status to the many readers of the Chronicle print edition and website and, significantly, to my professional colleagues in the fields of history and Latin American studies.

It also set the stage for informing my doctors about HD.

“I truly enjoyed reading (your) article during my lunch today and plan to keep it around when I have visitors in the office for them to review,” my doctor wrote in an e-mail later that day.

On a subsequent visit, he showed me the file where he kept my article and others about patients’ responses to challenging health conditions.

Visiting the neurologist

With a referral from my primary care physician, I then scheduled an appointment with one of the HMO’s neurologists in order to establish a relationship with a specialist in disorders such as HD and obtain a baseline reading of my neurological health.

A few days before the appointment, I faxed her a copy of “Racing Against the Genetic Clock” to provide her a detailed picture of my family’s history of HD.

At my October 7 consultation, the doctor thoroughly examined me for signs of classic HD symptoms such as difficulties with memory and the inability to walk along a straight line.

As in previous consultations at the UCSD clinic, the doctor saw no evidence of symptoms.

We discussed the various psychiatric medications that I take to help remain psychologically stable and at least one of which might protect brain cells, according to one of the physicians at the HD clinic.

I added that I would schedule an appointment with my HMO psychiatrist to help in my struggle to deal with both the psychological stress of living at risk and to do all that is medically possible to protect my brain from a disorder for which there is no proven effective treatment.

The neurologist and I also discussed the supplements I take, such as creatine and coenzyme Q-10. She immediately arranged for blood tests to check for any deleterious effects the supplements might have on my kidney and liver. To obtain this same information in the past, I had always gotten these routine tests by requesting a check on the effects of the psychiatric mediations, but without mentioning that I took supplements.

Unfortunately, my HMO will not pay for these supplements, which cost close to $2,000 per year. The health establishment does not recognize them as valid for attacking HD, as they’re in the experimental stage: several such substances have undergone study in mice and even humans.

(Similarly, for more than a decade I have consulted with a private psychotherapist who knows about my HD status but whose services are not covered by any health plan or insurance.)

At the end of the consultation, I welled up with emotion as I thanked the doctor and explained to her how meaningful it was for me to have spoken about HD to a neurologist within my health plan.

Like my primary care doctor, she maintained a professional demeanor. However, I was very happy that she agreed to receive e-mail updates of this blog.

Moving beyond the political and social drama

As I have so far felt vindicated in my decision to go fully public about HD and meld my professional and personal lives with my advocacy, so do I now feel extremely relieved and hopeful about integrating HD care into my overall health care.

By bringing these and other professionals into the HD loop, I am strengthening the team that I will need to manage the inevitable symptoms of the disease.

At the same time, I know that I stand on the edge of history with many other Americans who for the first time are testing the political and social waters in the wake of the passage of the Genetic Information Nondiscrimination Act, signed into law in 2009, as well as Obamacare.

In speaking to people from countries such as Canada and England, where public health systems allow (at least in theory) greater openness about genetic conditions, I recognize how long and difficult the path to medical transparency has been for me individually and for the nation as a whole.

It all seems like such a needless drama, which we have relived again with a U.S. government shutdown resulting from the political impasse over the implementation of Obamacare.

We in the HD community have truly suffered the brunt of exclusion, not only from proper health care, but also long-term nursing.

As I stated in my Chronicle article, “As knowledge increases about numerous other health risks, medical ethics must undergo profound revision, and a genetic-rights movement must arise. To borrow one scholar’s phrase, disease-gene carriers like me are ‘moral pioneers’ on the genetic frontier.”

During these past few weeks, I have felt very strongly that pioneering aspect of my life. I’m thrilled now to have my HMO joining me on this journey.

(Next time: Huntington’s disease and bioethics.)