The global cooperation necessary to defeat Huntington’s disease
requires the bridging of cultural divides. It entails recognition of each country’s
unique needs and contributions – but also of the common struggles involved.
With this in mind, last month I embarked on another phase of my
own international advocacy by traveling to Brazil, the country I have studied
since 1986, to deliver a speech on HD and build new connections for the cause.
The world’s fifth most populous country, with over 190 million
people, Brazil occupies a significant place on the world’s HD map. Perhaps
19,000-plus Brazilians suffer from the disease, and tens of thousands are at
risk.
Thus, once the global HD clinical trial and research study
platform known as Enroll-HD gets under way in Brazil, the
country’s potential contributions to the search for effective treatments will
increase substantially (click here to read more).
A ‘bi-cultural’
perspective
As I have done almost every year over the past three decades, I
visited Brazil primarily to work on my ongoing research in Brazilian history.
In all, I have spent nearly seven years there. In 1991, during my Ph.D.
research in Rio de Janeiro, I met my wife Regina.
Brazil is my second home. I refer to myself as “bi-cultural.”
Even before I joined the board of the San Diego chapter of the
Huntington’s Disease Society of America in 1998, I established contact
with Brazilian HD activists who founded the Associação Brasil Huntington (ABH) in 1997.
As a carrier of the HD genetic defect, I spoke in 2013 about my
personal strategies for avoiding onset of symptoms at the sixth World Congress
on Huntington’s Disease, held in Rio (click here and here to read more).
Gene Veritas (aka Kenneth Serbin) at Ipanema beach in Rio de Janeiro (photo by Regina Serbin)
Combating genetic discrimination
During this most recent trip, I advocated for HD-related issues
in my meetings with political leaders.
In 2005, the Brazilian Senate passed a bill protecting citizens
against genetic discrimination. However, the Câmara dos Deputados (the House of Representatives), has yet to take
up the matter. Until then, the bill cannot become law.
Senator Aloysio Nunes Ferreira Filho, who ran for vice president in the 2014 election
on the losing ticket of the opposition Brazilian Social Democracy Party,
supports the legislation. During my visit to his office in Brasília, the
capital, he phoned a colleague in the Câmara to urge action on the bill.
Senator Aloysio Nunes Ferreira Filho (above, photo by Gene Veritas) and Gene Veritas in the chamber of the Senado Federal in Brasília (below, photo by Lucas Souza)
Defending the rights of the disabled
Later, in São Paulo, South
America’s largest industrial and financial hub, I attended a presentation by
the famous liberation theologian Leonardo Boff about the geopolitical state of the world, the threat to the global environment,
and the current political crisis in Brazil.
The event was moderated by Paulo de Tarso Vannuchi, who served as
Minister of the Special Secretariat for Human Rights from 2005-2011 in the
government of the ruling Workers’ Party.
Vannuchi briefly introduced me to leaders of the National Council
for the Rights of the Disabled. I committed to furnish them with information
about HD and put them in touch with the ABH.
Vannuchi told the
audience of 60, which included clergy and grassroots social activists, of my HD advocacy and suggested that the reporters present
interview me.
Paulo Vannuchi, former Minister of the Special Secretariat for Human Rights (photo by Gene Veritas)
That same day I gave an interview to the TVT television outlet
commenting on the importance of Boff’s speech. (You can see the report on the
event, including my commentary, by clicking here).
Shortly after my return from Brazil on July 22, one of the
reporters present at the event, São Paulo-based radio broadcaster Marilu
Cabañas, interviewed me via phone about HD for her program. Shocked to hear of police detentions of HD-affected individuals in both Brazil and the U.S. because of ignorance about the disease, she headlined her report
with that fact.
Bioethical challenges
I gave my speech, “Huntington’s
Disease, Bioethics, and the Promise of Biotechnology,” on July 20 at the
Universidade Candido Mendes (UCAM) in downtown
Rio de Janeiro.
I have known the rector, Candido Mendes, for more than 20 years.
My friends and colleagues, UCAM Professor Luiz Alberto Gómez de Souza and his
wife Lúcia Ribeiro, both leading scholars and grassroots activists of the Catholic
Church, organized the event. (Brazil is the world’s largest Catholic country.)
During my hour-long presentation in Portuguese, I recalled my
family’s long fight against HD, beginning with my mother’s diagnosis in 1995,
followed by positive test for the genetic defect in 1999 and the wrenching
experience of testing our daughter Bianca in the womb in early 2000.
I felt deep relief after showing the audience pictures of our
HD-free “miracle baby” in
action as a youth soccer player. I spoke of the “double luck” we currently
savor: Bianca will never face the terrible threat of juvenile HD, and I remain
symptom-free despite having long passed my mother’s age of onset.
“At 55, my mother […] could no longer drive, she couldn’t work,
she couldn't talk,” I said. “By a huge stroke of luck, I am healthy. Each day is a
blessing.”
However, I also pointed to the many other bioethical challenges
faced by HD families, including discrimination, family and caregiver stress,
financial burden, and the lack of adequate facilities and caregiving personnel for late-stage patients.
The room became very quiet as I related how Carol Carr (of
Georgia) in 2002 took a gun to the nursing home where her two HD-stricken sons
lay helpless in bed and shot them dead to prevent further suffering. Carr spent
nearly two years in prison.
“That was extremely sad for our community,” I recalled.
“Huntington’s disease is not something easy to speak about.”
With no effective
treatments, such was the degree of hopelessness that has plagued the HD
community, I had pointed out earlier.
The hope of clinical trials
“But I came to Brazil not to speak just about sadness,” I continued.
“I also came to speak about hope and the promise of biotechnological research.”
The scenario for the HD community has changing radically in
recent years with major advances in research and the advent of clinical trials
to test potential remedies, I said.
I spoke of the immense potential revealed in the announcement
last year of the gene-silencing clinical trial by Isis Pharmaceuticals, Inc. Citing an e-mail from Isis executive Frank Bennett, Ph.D., received the
day before the presentation, I confirmed that the trial would start by year’s
end.
(Indeed, the morning after my talk, Isis officially
announced that it had commenced the trial.)
You can view my talk in the video below.
A local commitment to the cause
During the Q & A, several Brazilian HD-affected individuals
and caregivers spoke of their many struggles with the disease.
They also expressed excitement about the Isis clinical trial.
Carmen Paiva, Ph.D.,
spoke of her lab’s work in HD genetic and epidemiological research among
Brazilian HD families. She told the audience of other local researchers and
physicians focusing on the disease.
Recognizing common struggles
At the close of the session, Prof. Gómez de Souza evoked a key
point of my presentation: the interconnectedness of neurological disease
research and the common struggles of the afflicted.
He spoke with profound emotion about his brother, the renowned actor
Paulo José Gómez de Souza,
who has suffered from Parkinson’s disease for more than two decades but has
successfully strived to continue working.
The struggles are shared among diseases – and among nations.
I look forward to celebrating with my Brazilian relatives and friends the defeat of HD, Parkinson's, and other neurological disorders as a result of a truly global effort.
I look forward to celebrating with my Brazilian relatives and friends the defeat of HD, Parkinson's, and other neurological disorders as a result of a truly global effort.
