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.

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.

Big decisions while facing the threat of Huntington’s disease

At every turn of life, we all make big decisions such as choosing a career, a mate, a home, and the number of children to conceive.

Living with the knowledge of a positive test for a devastating condition such as Huntington’s disease radically complicates such decisions. Coupled with the deep stigma associated with HD, the fear of the onset of symptoms magnifies the stress and doubt that come with such turning points.

As I have frequently revealed in my writings and in speeches about HD, I have faced life-changing decisions about a feeding tube for my HD-stricken mother, my genetic test, and the test of our daughter while still in the womb. (Thankfully, she tested negative!)

Planning for the inevitable symptoms of this currently untreatable disease has also profoundly altered my career, leading me into a new field far different from my original focus on Brazilian history: the history of science, technology, and medicine.

With my definitive exit from the “HD closet” last fall, I have begun to integrate this new intellectual passion into my professional life.

Professional excitement

Lately, however, I’ve relived the intensity of how the threat of HD affected my professional decisions.

With the surprise resignation of Pope Benedict XVI on February 11 and the emergence of several potential successors from among Latin America’s cardinals, my expertise on the Roman Catholic Church’s actions in the region and its relations with the region’s dictatorships – topics usually of no interest to the media and the general public – suddenly were in demand.

The election of Pope Francis I created great excitement: his initial attitudes and actions indicated that he might very well attempt to clean up the corruption and abuses that have plagued the institution.

At the same time, it rapidly became apparent that the new pope had had his own complex and (to some) controversial relationship with the Argentine dictatorship, which carried out a “dirty war” against Argentines from 1976-1983.

In the period before and after the election of Pope Francis I, I gave eleven interviews and answered a number of other queries from newsmagazines and radio and TV outlets.

My personal excitement culminated with the publication on March 17 of an op-ed article, outlining the potential paths of the Church under Francis I, in one of Brazil’s most prestigious newspapers, the Folha de S. Paulo, followed  by a quotation from me about the Argentine branch of the Church in a front-page story in The New York Times.

As I told a number of friends, never before and probably never again will my scholarly work on the Catholic Church command so much attention in the United States.

Throughout all this, I began to relive the past thrills and satisfaction of researching the Church, publishing books on the topic, and discussing my work in the Brazilian media.

My wife seemed especially happy to see me enjoying, for the first time in a very long while, recognition for my original career path. For her, it was a relief from that dogged, sometimes seemingly one-dimensional aspect of my life involving the fight against HD.

Second-guessing the past, but welcoming the future

As a result, I began second-guessing my decision in 2007 to turn down a job to help run a prestigious Latin American studies center in Florida in order to remain in biotech-rich San Diego to focus on the fight against HD. Staying put also helped safeguard my family’s financial future by allowing my wife to keep her good job and better-than-average retirement plan – absolutely essential if HD were to leave me disabled.

I thought of the HD people I had recently read about who had roughly the same degree of genetic mutation as I did and managed to avoid symptoms until their sixties and even continued to work after onset.

However, in the process of second-guessing, I recalled how I made that decision when the memories of my mother’s demise just a year and a half before still haunted me.

In hindsight, it’s easy to argue that I should have taken the other job and not worried so much about HD.

However, hindsight also reminds me of how HD completely destroyed my mother’s ability to work, to communicate, and to care for herself.

My wife and I made our big decision with the best information available to us at that moment.

I quickly reminded myself that rather than reliving the past, I must look to the future, value the intellectual flexibility of my university, and fulfill the plans I have mapped out for myself. I will be seeking connections with my university’s neuroscience program and social outreach project in order to promote brain health as a national priority.

Indeed, my dean has fully supported me after my exit from the HD closet. I felt especially reaffirmed with the publication of a feature article about my journey with HD on the university’s website.

The decision to pursue the history of science, technology, and medicine has exposed me to new vistas of the human story. HD is a challenge – but also a gift that has led to profound intellectual and personal growth.

The real successes and challenges

I savored my public moment as a Latin America scholar.

However, it stood in sharp contrast to the intensity and immensity of the challenge to avoid HD symptoms and contribute to the defeat of the disease.

While friends and colleagues were impressed with the recognition of my expertise, I quietly pondered the truly significant accomplishment for me during the week of Francis I’s election: the successful arrangement of a meeting between Paulo Vannuchi, Brazil’s former Minister of Human Rights, and Taíse Cadore, the president of the Associação Brasil Huntington. They discussed the crucial need to involve Brazil’s Ministry of Health in the fight against HD in Brazil, which will host the 2013 World Congress on Huntington’s Disease from September 15-18.

Ultimately, scientists’ work will go for naught unless events such as the World Congress can draw more people into the HD cause and involve them in the all-crucial research studies and clinical trials.

Participating in a study

On March 13, as I monitored the Internet for news of the papal conclave, I spoke to a researcher at the Huntington’s Disease Society of America Center for Excellence at Iowa Hospitals and Clinics, one of the sites for a key study known as PREDICT-HD, an observational study of the earliest signs of HD that needs asymptomatic, gene-positive volunteers.

PREDICT-HD will help establish ways to measure the efficacy of potential treatments.

Participating in PREDICT-HD represents another big decision for my family and me. The study requires the presence of a spouse or partner, who must answer a questionnaire about the gene-positive individual. All three of us must spend two days traveling and at least two days in Iowa.

The PREDICT-HD also involves a voluntary spinal tap so that cerebral spinal fluid from gene-positive people can be studied for the effects of HD and ways to measure the efficacy of potential treatments.

Spinal taps are routine but, like any procedure, involve risks such as a debilitating headache that could require emergency room treatment. In my case, it means that I will probably notify my health insurance plan for the very first time of my gene-positive status. I want to make sure I can safely undergo the tap, and I want to have my plan doctors on standby in the event of complications.

In and of itself, informing my health plan about HD represents yet another significant shift in my medical, psychological, and emotional approach to the disease.

Channeling the positive energy

As the HD researcher and I finished our discussion about PREDICT-HD, I saw the announcement of breaking news about white smoke from the Sistine Chapel: a new pope had been chosen.

Minutes later, my daughter and I watched as Francis I appeared on the balcony of St. Peter’s Basilica in Rome and humbly prayed the Our Father and Hail Mary with the crowd gathered below – the same prayers she and I say together each night, alternating in English and Portuguese, before she goes to sleep.

I felt a new beginning for the Church.

In the days since then, I have frequently asked myself how I can channel the deep fulfillment and positive energy from my study of this troubled but nevertheless key institution into the effort to relieve the suffering caused by Huntington’s and so many other devastating diseases.

As I wrote in my op-ed piece on the pope, Francis I “seems to be saying that believers, and the rest of the world, must rediscover the fundamentals of human existence.”

In his inauguration homily on March 19, Francis I stated that “authentic power is service.” As pope he must protect “the hungry, the thirsty, the stranger, the naked, the sick and those in prison.”

For me, this means protecting my family from the consequences of HD and striving to do my small part to help others.