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.

Coming down from coming out: recharging the activism batteries

After giving the speech of a lifetime about facing the threat of Huntington’s disease, I need to recharge my batteries.

As readers of this blog know, it's been an intense few weeks. On February 7, I told a meeting of some 250 HD researchers and supporters of the search for a cure that I am gene-positive for the cruel and deadly brain disease that took my mother’s life in 2006.

I had finally gone public after 15 years of hiding my situation. I'd feared genetic discrimination in the workplace and the insurance and healthcare systems.

I still have such fears, but they've diminished somewhat, thanks to the passage of the Genetic Information Nondiscrimination Act in 2008 and the healthcare legislation of 2010, which by 2014 will prohibit denial of coverage to people with pre-existing conditions.

And, because I’m in a race against time as I await an effective treatment, I’ve committed to a bolder stance

Less than a week after my speech, I posted a video of it on this blog. I followed up a week later with an extensive article about the meeting, the “Super Bowl” of HD drug discovery, including videos of my interviews with two leading HD researchers.

In preparing the presentation, I kept thinking of how I was “writing my life.” From mid-December, when I began the speech, until now, I’ve revisited the many memories of my parents and my fears of HD. And I’ve braced myself for the emotional and social impact of leaving the HD closet.

Now I’m taking stock of the whole experience. But it’s not easy to process so many difficult thoughts while handling the many responsibilities of work, family, and community. And there is no “right” or “wrong” way of handling an exit from a closet, especially when in the case of a little-known yet highly stigmatized brain disease like HD. So I don’t yet have any clear conclusions.

In these last few days I did know one thing for sure: I needed to rest up for the next stage of my activism in support of greater public awareness about HD and the need to find treatments and a cure.

Adrenalin mixed with worry

Sharing my story with the scientists who hold my future in their hands left me exhilarated. My keynote speech moved many in the audience to tears.

A number of the scientists later came up to me during the four-day meeting in Palm Springs, California, and said the speech had brought home the reality of HD and inspired them to redouble their efforts.

Later I was interviewed on camera for a forthcoming video about the urgent need for the HD community to participate in clinical and observational trials. Without such help scientists will lack the data they need to develop effective drugs.

I was interviewed by Charles Sabine, a former NBC-TV foreign correspondent and now the international spokesperson for the HD movement. Charles is also HD-positive.

The online video of my keynote speech drew an unusually high number of visits to this blog. People expressed thanks and support.

The speech and my coverage of the meeting brought an adrenaline rush, but also worry about the possible long-term consequences of coming out. I couldn’t point to anything specific, but felt exposed and a bit defenseless. The day after I put the speech online, the emotional overload gave me heartburn.

Translating the science

I had little time to think about the impact of the speech, because I immediately had to shift my focus to comprehending the new research data presented by the scientists. I dedicated each minute of my free time on the weekend of February 19-20 to the update on the meeting.

Although my speech marked a personal milestone, translating the science into language understandable for the HD community presented an equally significant challenge. It is the scientists who will find the solution to HD. The HD movement has become my life’s work, and a big part of that involves informing people of the scientific progress and inspiring them to get involved.

To produce that article I had to get into my special writing zone. It’s a huge challenge to write on HD research, because I was trained in history, not science. The scientists speak in their own highly technical language, and I had to get the translation just right. So I imagined myself somehow fine-tuning my brain for the task.

I relish the challenge, because that kind of stimulus could partially protect my brain against HD’s attack on my mental abilities, including my great passion for writing.

But reporting on the search for treatments also makes me painfully aware of how the disease harms the brain years and even decades before the classic symptoms kick in. It's painful to look at scanning images that illustrate how HD shrinks the brain by causing neurons to die.

In these last few weeks I’ve often felt as if I’m in a daze.The need to deny the reality of HD sometimes makes me feel as if it’s all unreal, as if I’m floating above myself, my predicament, and the scientists and am looking down at it all.

Coming down from coming out

Every beat of the heart requires a rest, so I’ve also spent time more time than usual decompressing.

At one of the dinners for the scientists, the host hotel, the Parker Palm Springs, served a fantastically good wine. Or was it my exhilaration that made the wine taste better? I copied the label information on a napkin: “Hangtime. 2008 Pinot Noir. Arroyo Seco. Force Canyon Vineyard.”

“Hangtime” refers to the period the grapes remain on the vine. It also refers to enjoying the company of good friends and good wine.

I couldn’t find the 2008 vintage of Hangtime in San Diego, but I bought a few bottles of the 2009 vintage to share with my wife and friends.

Each sip reminded me of the speech and the commingling of my hopes with the scientists’ efforts to find a cure. I want so badly for those feelings of hope – and feelings of freedom from HD forever – to hang endlessly in time.

I’m going to track down a bottle of that 2008 vintage and keep it as a remembrance of the meeting. I’ll uncork it the day the scientists have found an effective treatment that saves everybody in the HD community from its devastating symptoms.

Keeping a balanced life

As many readers of this blog may have concluded, I’m a workaholic. That keeps me focused. But sometimes I let my activism consume me. Then I must remind myself that, no matter the circumstances, life requires balance.

A few weeks ago our “miracle baby,” who was born HD-negative in 2000 after we had her tested in the womb, lamented the fact that I had not taught her how to throw a ball properly.

After work one afternoon, I stopped at Target to choose a cushy ball the size of a softball. I took my daughter to the park, and we practiced tossing it back and forth. When it was time to go, I made her throw it to me and catch it three consecutive times without a miss before we could leave.

In the days that followed, thinking of the ball became the antidote to my workaholism.

It’s also a reminder that my daughter needs me.

Keeping the balance is a huge challenge, because for me to be with my family in the long run, I must spend time away from them in the short run working for the cause. However, although scientists are increasingly optimistic about a treatment, nobody can predict exactly how or when they will find one.

Looking ahead

So now it’s time to recharge my mental, emotional, and physical batteries for the next wave of activism. The keynote speech is already creating new opportunities for me to contribute to the cause.

Tomorrow evening, February 28, I will speak to the local HD support group on my coping strategies.

In early May I will make a similar presentation to the annual convention of the Northern California chapter of the Huntington’s Disease Society of America.

I’m also planning a trip to Cambridge, Massachusetts, to visit the headquarters of Alnylam Pharmaceuticals, which is getting ready to apply for permission from the federal government to conduct human trials for its potentially revolutionary remedy, an RNA interference drug, to stop HD at its genetic roots. I will write about Alnylam in future articles.

As I step up my public advocacy, I’m embarking on a new phase in my life. More than ever, I’m going to need large quantities of positive energy.

Feeling like an alien: going public about Huntington's

How do you overcome the stigma and fear of discrimination associated with a brain disease that could leave you horribly disabled?

I’ve struggled with this question constantly since my mother’s diagnosis for Huntington’s disease in 1995. HD caused her body to move uncontrollably and robbed her of the ability to speak, eat, and think. She died in February 2006.

My fear of HD and discrimination increased exponentially after I tested positive for the disease in 1999.

But in 2010 I started to come out of the HD closet. After turning 50 and putting in twelve years as an activist for the Huntington’s Disease Society of America (HDSA), I believed it was time to speak out. I also felt encouraged by the passage of the Genetic Information Nondiscrimination Act of 2008 and last year’s new healthcare legislation, which will ban the exclusion of people with pre-existing conditions from health coverage.

I took two very big steps last year. In June I revealed my gene-positive status in public for the very first time, and in September I gave a presentation on my family’s struggle with HD at Vertex Pharmaceuticals.

Going fully public

Now I am preparing to go fully public. On February 7, I will deliver the keynote address to Huntington’s researchers from around the world at CHDI’s 6th Annual HD Therapeutics Conference at the Parker Palm Springs hotel in Palm Springs, CA.

Starting the day after Super Sunday, this event is the “Super Bowl” of HD research. The CHDI Foundation, Inc., informally known as the “cure Huntington’s disease initiative,” is the largest private sponsor of HD research.

CHDI is going to record my speech and very likely place it on the web.

For the first time, the greater HD community – and anybody else who watches the video – will know my real identity.

New burdens

So I’m scared!

Living in the closet was comfortable. It allowed me to deny the “truth in my genes” to both myself and my friends and acquaintances.

But after February 7, I’ll take on new burdens, including the deep misunderstanding many people will likely have about an unknown, complex, genetic, and deadly disease.

For years I’ve played through my mind all kinds of scenarios about coming out and people’s reactions to it.

Starting next week, I’ll be dealing with the reality of coming out.

Dual identities

To help me get ready for the CHDI speech, I read the graphic novel It’s a Bird …, written by Steven T. Seagle and illustrated by Teddy Kristiansen. The 2010 CHDI keynoter, Seagle is from a family affected by HD.

Seagle’s story about a man’s fear of HD, which afflicted the main character’s grandmother, strikingly resembles parts of my own family’s story – and that of so many other families struggling with the stigma of HD.

Steve, the main character and a comic-book writer, is like Clark Kent/Superman: he has two identities, one public and one secret.

But while many people identify with Superman, Steve hates him. The dual identity painfully reminds him of Huntington’s disease as he struggles to come to terms with his own at-risk status and his parents’ cover-up of the disease. This predicament sometimes leaves Steve downright miserable and unable to share his feelings with his girlfriend or anybody else.

I, too, live with a painful dual identity – my HD world and non-HD world.

HD ‘aliens’

Steve narrates the story of the day he visits his aunt, who lies gaunt and twisted in bed as she goes through the final stages of HD (boldface in original):

You can shield a child’s eyes from this, but as an adult, there is no looking away.

What you see, immediately… What you know… Is that there’s no good thing to hope for a Huntington’s patient. If you hope they’re fine except for their body – you’re condemning them to a life sentence lived out inside a useless shell.

If you hope they’re vegetative and mentally gone – then you’ve damned them to a meaningless living death.

And the concerns compound when you own up to the fact that in another twenty years … this could possibly be you…

With your kids looking down at your twisting, writhing body and wondering the same thing about you …

… And themselves…

… Because this is not a condition you could hide like a rash, or a tumor secreted on the inside.

This disease sets you apart, marks you as different …

… Alien.

Superman is an alien.

I feel like an alien with my HD-positive status.

How are people going to react? Will people at work question my ability to perform? Will people make discriminatory comments? Will my 10-year-old daughter hear jokes at school?

And how will I react to people’s reactions?

Seeking support

On January 24 I participated for the first time in several years in the local HD support group’s breakout session for at-risk individuals.

My HDSA activism began through support group in the late 1990s, and, last year, I decided to return to my roots in the organization by resigning from the board of directors and dedicating more volunteer time to support.

In the past I gained much from this group. Now I want to give back.

At first I felt strange sitting with the two facilitators and two other at-risk individuals.

But I also opened up about my deep fears about going public.

I was once again struck by the undeniable reality of HD.

As I take the fight against HD public, I’ll need more support than ever.