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.
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.)
