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.

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.) 

Hope of clinical trials creates new, proactive outlook on Huntington’s disease

A diagnosis or positive genetic test for Huntington’s disease has always meant a terrible, prolonged death sentence. However, the vast, growing body of knowledge about the disease and the genuine hope of clinical trials have opened the door to a more optimistic, proactive outlook on HD.

That’s the message I’ve transmitted in recent speeches, including one titled “Genuine Hope for Huntington’s Disease Treatments: New Ways of Thinking about HD,” the keynote for the event “Living with Huntington’s: An HD Education Day,” held by the North Carolina Chapter of the Huntington’s Disease Society of America (HDSA) on May 12.

“It was a very, very hopeless situation,” I told the audience in describing my mother’s diagnosis with HD in 1995 and my positive test for the condition in 1999. We in the HD community kept hearing that there was no “effective way of stopping Huntington’s.”

In recent years, however, the increase in research and the promise of potential treatments have brought about “the transition from hopelessness to hope.”

Read on for a summary of the speech’s main points. You can also watch it in the video below.

2012 North Carolina HD Talk from Gene Veritas on Vimeo.

Our lives are not lost

I drove home the idea of hope by discussing the worldwide effort to end HD and the imminence of potential trials, including the one aimed by Isis Pharmaceuticals, Inc., to silence the HD gene and expected to begin by late 2013 or early 2014, and, if successful, to result in a drug perhaps by 2020.

“These are real people in the labs,” I emphasized, showing a photo of Isis scientists at the company’s Carlsbad, CA, facility. “We think of scientists as people in these white coats, maybe wearing really thick glasses, or having really pointy heads, sitting in a lab. But they’re everyday people just like all of us, and they want to see the treatments.”

“It’s time for a new outlook,” I continued, recalling the HDSA slogan “let’s make this the last generation with HD.” “That seemed like a dream ten or 15 years ago, but now I think we’re closer to that becoming a reality.”

Rather than slip into the old, depressing notion that HD is untreatable, we now must embrace a new phrase: “HD will be treatable.”

“It’s more and more a question of not if, but when this is going to happen,” I said, noting that scientists are now “genuinely optimistic” about potential treatments. “We need to tell ourselves everyday: there is hope, and my life is not lost.”

A more proactive view of genetic testing, self-care

Because of the hope provided by research, fear of genetic testing “can and should diminish,” I observed. Gene-positive people can plan for the future by maximizing their physical, emotional, and spiritual health and putting in order matters related to insurance coverage, career, finances, and family planning.

They can and should also participate in current or future trials requiring gene-positive, asymptomatic participants, I said.

“You can give back to the community at large by participating in the search for treatments,” I added.

“So yes, testing is scary, there’s no doubt about it,” I said. “But I think now testing is ultimately proactive. I think we need to turn around the way that people think of testing as something so intimidating and scary, a life-ending experience.”

Overcoming denial, spurring participation

I began and ended the presentation with a reflection on the roadblocks to our success.

“We know that there are a lot of HD families that could not make it here or didn’t want to be here today,” I said. “Part of the reason there aren’t more people in the room is because we struggle in Huntington’s with a terrible stigma, and along with that stigma comes shame, fear, and one of my worst enemies of all, denial.”

Denial affects all of us because it discourages the participation in clinical trials and therefore hinders scientists from effectively testing potential treatments.

To engage others in the process, we cannot preach or harass, but must pursue a gentle approach. Most importantly, we need to live by example, to keep telling our personal stories, “opening your heart to others” and educating them about the trials.

“We need to live optimistically, on a daily basis,” I concluded. “Yes, HD is a terrible cross to bear. But I think that knowing we can be part of the solution, that we can help the scientists, help the doctors find a treatment, this is something that gives us a sense of purpose, gives us a sense of being part of something larger than ourselves. It’s not just me, it’s not just my family. It’s people around the world who are affected by Huntington’s, and other conditions.”

(For additional thoughts about the new outlook on HD, please click here.)

Out of the closet and on to the cure

I have taken my biggest step ever out of the HD closet.

Yesterday I gave a presentation to about 50 people at the Vertex Pharmaceuticals facility in the biotech corridor of San Diego. I titled it “Gene-Positive for Hell: My Family’s Fight Against Huntington’s Disease.”

This was the first time I spoke publicly about HD in the United States and identified myself as gene-positive for HD. I had come out to an audience in Brazil in June. (In this blog I will continue to use my pseudonym, Gene Veritas.)

It’s a day I won’t forget, as long as I can stay healthy and not succumb to the symptoms of HD that destroy the ability to remember and communicate.

An emotional preparation

Vertex is a drug-discovery company now turning its focus to Huntington’s. I had met Beth Hoffman, Ph.D., the company’s Vice President of Biology, at the CHDI conference in Palm Springs last February. The company’s philosophy of close collaboration with patients and disease-fighting organizations led to an invitation to speak about my personal experiences.




In the days before my talk, I struggled to find the right formula for the presentation. I knew I'd have to be precise and compelling, because the audience would mainly include highly-educated scientists.

Preparing for it drained me emotionally. I reviewed some short videos I had shot of my HD-stricken mother and my father, the “HD warrior” who cared for her for 15 years until she entered a nursing home in 2005. She died in February of 2006, and my father died on September 25, 2010 – a year ago today.

My ten-year-old daughter, who recently learned of my gene-positive status, watched the videos on my computer screen and saw some of the PowerPoint slides I was setting up for the presentation. I explained to her that I would be making a speech about HD.

On Thursday, September 23, I awoke at 2:30 a.m. with a burst of energy and anxiety. I spent the next two-and-a-half hours finishing the PowerPoint. At 5 I turned off the computer and started my normal morning routine of stretching, breakfast, a shower, and the drive to work.

A big surprise

On Friday afternoon I was only at Vertex for a few minutes when suddenly I recognized a familiar face. It was a neighbor whose daughter attends the same school as our daughter. We shared school car-pooling duties one year, and the two girls played one season on the same soccer team.

“Today you’re going to learn something new about me, something pretty big in my life,” I said as I shook his hand.

I was very surprised to see him. My mind immediately went to work on processing this unexpected bit of data. I had prepared myself to speak to the Vertex audience, but I had not imagined speaking to neighbors.

“You’re really going to go public today and take this all to a new level,” I told myself. “Whatever happens, happens.”

HD’s impact

My presentation compressed 15 years of my family’s confrontation with HD into 45 minutes. I defined Huntington’s as “one of the cruelest of diseases.” Its social impact is immense. HD burdens families with round-the-clock caregiving, financial strains, discrimination, insurance issues, the difficult decision about whether to have children, and the curtailment of many of life’s dreams.

Then I described some of my mom’s symptoms and their consequences. Her wobbly walk, for instance, constantly put her in danger of falling. Once she broke a wrist, and another time she sustained a large gash to her head that required staples.

Next I focused on HD’s impact on my wife and me. I began with my decision to get tested, the result of my wife’s and my desire to have a child and to insure that he or she would be free of HD.

I revealed that we had a difficult time committing to our daughter-to-be until we received the news from our geneticist that she had tested negative in the womb. This, I told the audience, was one of the happiest days of our life.

Juxtaposing a photo of our daughter playing soccer next to another in which she posed with Terry Leach, a victim of juvenile HD, I contrasted our healthy “miracle baby" with her potential fate – and our immense worry and pain – had she tested positive.

I felt as if I were riding an emotional rollercoaster, careening from one sharp curve to another. I relived many intense moments of anger, frustration, and fear. Several times I nearly cried but instead spoke even more passionately.

A big step

I have responded to the challenges of HD by channeling my energies into activism for the Huntington’s Disease Society of America (HDSA). I outlined for the audience the many facets of this work: fundraising, production of the chapter newsletter, website development, advocacy, volunteer recruitment, participation in the HD support group, reporting on research, and my blog.

I concluded the personal aspect of my presentation with some thoughts about “exiting the HD closet.” This was a “big step” for me, I told the audience. It was the culmination of a very long process.

I – and many other people in the HD community – can now breathe a little bit easier thanks to the implementation of the federal Genetic Non-Discrimination Act and the passage of President Barack Obama’s health care reforms, which prohibit exclusion of people with pre-existing conditions from insurance coverage.

Imagine, I told the audience, had these measures been in place 15 years ago when I began my fight against HD? I could have been more open about it all, and would have had far fewer worries about insurance.

Imagining a celebration

After my presentation, the Vertex employees asked questions for about 20 minutes about various aspects of my life with HD. Knowing the intellectual acuity of scientists, I had expected some pointed questions.

But I felt great empathy from the audience. As Dr. Hoffman explained to me, seeing the real impact of a disease on people is far different from a discussion about the disease as seen in a test tube.

During the question-and-answer period, Paul Negulescu, Ph.D., the Vertex VP for research and the head of the San Diego facility, asked how I deal with HD on a day-to-day basis. I gave Dr. Negulescu several examples of the mechanisms I have developed, including the deep catharsis I experience in writing this blog.

Later, alluding to his question again, I said that I want to return to Vertex after the company has found a cure for HD and get drunk with him and everybody else to celebrate!

Vertex has potential drugs in the pipeline for controlling cystic fibrosis – like HD, a genetic disease – as well as one for hepatitis C.

Vertex’s HD program seeks to find ways to correct the action of faulty proteins in brain cells. (I'll write more on Vertex’s strategy later.)

I joked to the audience that they had better hurry up, since another San Diego biotech, Isis Pharmaceuticals, Inc., is also hard at work on a major treatment.

After the Q & A, I mingled with the attendees as they partook of the spread of food and beverages the company had laid out. My neighbor came up to me. “I thought of your wife and daughter in all of this,” he said, referring to the many travails I had presented.

The Vertex approach

My visit to Vertex – along with three other members of the HDSA-San Diego board who saw my presentation – helped build an initial bond between the company and the local HD community. To find treatments and a cure for an orphan disease such as Huntington’s, Vertex and the HD community must work together.

Before and after my talk I spent several hours interviewing Dr. Negulescu, Dr. Hoffman, and other Vertex researchers in charge of HD research.

Vertex is reinforcing its commitment to HD families by co-sponsoring our chapter’s tenth annual Celebration of Hope Gala, set for October 22.

Taking in the moment

After saying good-bye and driving off in my car, I stopped a few yards down the street to get some pictures of a street sign I had seen on the way in. It said “Road to the Cure.”


(Photo by Gene Veritas)

Vertex is strategically positioned to help find that cure, I thought as I contemplated the sign.

It was 6:30 p.m., and all was now quiet at the heart of one of the world’s leading biotech corridors. I paused for a few moments to take in the day and what I had accomplished.

Then I got back in and drove off in the direction of the sunset.

Despite all I had relived that day, I felt a rekindled hope.