In an unprecedented
encounter, the first for any pope or world leader, Pope Francis I on May 18
will meet with Huntington’s disease sufferers at the Vatican, bringing new
attention to this affliction.
The key papal guests
will hail from Latin America, the pope’s home region, the area with the world’s
most Catholics, and a key locus of the quest for the HD gene from the 1970s to
the 1990s.
Several HD-affected
HD individuals (with both juvenile and adult onset), three at-risk relatives,
and other relatives and caregivers – a total of 16 people – will travel to Rome
from Colombia, Venezuela, and Argentina, the pope’s birthplace.
The news was
announced today via e-mail by an international coalition of patient advocates and
organizations: "save the date for the largest global gathering of the Huntington's disease community!"
The coalition includes Elena Cattaneo, Ph.D., a prominent HD scientist and senator-for-life in Italy;
Factor-H, a humanitarian project founded by HD researchers Claudia Perandones,
M.D., Ph.D., and Ignacio Muñoz-Sanjuan, Ph.D.; global HD advocate Charles
Sabine; and the Huntington’s Disease Society of America (HDSA).
Many physicians in
Latin America laid the groundwork for the event through their long-term
dedication to local HD communities and assistance in selecting the families.
The announcement
comes, coincidentally, on the fourth anniversary of Francis’s election as the
first pope from the Americas.
“What I want him to
say, in some way, is that the disease should not be hidden anymore,” Sabine, an
HD gene carrier, told me. “That’s the theme of the event: that people should
not feel any shame or stigma about the disease.”
“This is a dream
which has come true,” Dr. Perandones affirmed in a written response to
questions about the event. “After working for nearly 20 years in Latin America
in order to try to improve the quality of life of patients, and feeling so
alone in this endeavor so many times, it seems unbelievable that the pope will
receive us.”
Putting HD on the global stage
The South American
HD families will be joined by three dozen advocates and HD family members from
other countries, including HDSA CEO Louise Vetter and leading American HD
advocate Katie Moser, the 2010 HDSA Person of the Year. Latin American
Catholic leaders will also take part.
“As a global leader,
Pope Francis has the power to elevate the conversation about HD to an
international stage with a call for compassion – and action,” Vetter said.
I was also invited
to meet with the pope, because of my interlocking connections with the Catholic Church, Latin America, and HD advocacy. My
mother died of HD, and I carry the genetic defect.
I am thrilled! I consider it a
privilege and a responsibility to attend, and expect to bring my wife Regina
and teenage daughter Bianca. We will represent the HD community in both the
U.S. and Brazil, Regina’s homeland. At least three HD-affected individuals will
attend from Brazil, according to advocates there.
(Portuguese speakers can watch my report in that language in the video at the end of this article.)
(Portuguese speakers can watch my report in that language in the video at the end of this article.)
Help desperately
needed
Scientists and
advocates began discussing an appeal for the Church to help – and then a papal
audience – in 2015.
Dr. Perandones, a
clinical geneticist with the National Administration of Laboratories and
Institutes of Health in Argentina, and Dr. Muñoz-Sanjuan, of Spain, a vice
president at CHDI Foundation, Inc., the nonprofit virtual biotech
dedicated solely to the development of HD treatments, first raised the idea of
seeking Church support for Venezuela’s isolated HD people during a February 2015 CHDI conference. Talking with Sabine and Senator Cattaneo, Drs. Perandones and
Muñoz-Sanjuan said that those families desperately needed help.
With aiding those
people in mind, Sabine, a native of England, and Senator Cattaneo came up with
idea for a papal audience in fall 2015 after Sabine saw a man with Parkinson’s
disease have his picture taken with Francis and also learned the poignant story
of an HD-affected teen from Buenos Aires. Sabine and the senator found no
“reference anywhere by any pope to Huntington’s disease,” he explained.
Thanks to Cattaneo’s
connections and the Vatican’s receptivity, they were able to schedule the papal
audience. Now, Sabine says of the upcoming meeting, “It is perhaps one of the
most historic moments in the history of the HD community.”
According to Sabine,
it will mark the first time that any world leader, including a U.S. president,
will meet with HD families.
Charles Sabine (above, photo by Gene Veritas, aka Kenneth P. Serbin) and Senator Elena Cattaneo (below, photo from Cattaneo Lab)
A major opportunity to overcome shame, stigma
Sabine, a former
foreign correspondent for NBC News, has pursued activism since the mid-1990s,
without being yet symptomatic. His father died of HD, and an older brother has
the disease.
“I had spent a lot
of time working for NBC at the Vatican,” he said. “I know that the pope is the
hardest person on the planet to get to – much harder than the American
president.”
By blessing and
speaking to HD-afflicted families publicly, Francis can make a “profound
difference” in combatting the shame and stigma surrounding HD, Sabine added.
“We want as much
press on this as possible,” he continued. “We want to engage as many people as
possible around the world, not just Catholics, to make this into a larger sum
than the parts.”
“Furthermore, we
hope this will lead to action, both by the Catholic Church, with its strong
presence in Latin America, as well as from local and national institutions,”
Dr. Muñoz-Sanjuan wrote in an e-mail.
The public event
will take place in a 7,000-seat auditorium, where attendees can observe the pope’s
interaction with the South American families and HD advocates. Event organizers
want as many representatives as possible from the HD community to attend.
“Anyone can go,”
Sabine emphasized. “They don’t even need to be HD-affected. They might just care
about HD."
The announcement made today by the international HD coalition; click on image to view larger (photo courtesy of HDSA).
The announcement made today by the international HD coalition; click on image to view larger (photo courtesy of HDSA).
A humanitarian endeavor
The organizers also
hope the meeting galvanizes the HD community worldwide. Members of groups
such as the global Huntington’s Disease Youth Organization could meet beforehand and go to the event together, Sabine
suggested. Other events in Rome will celebrate the unity of the HD movement and
solidarity with the plight of Latin American HD communities.
All attendees are
required to register on the event’s official website, HDdennomore.com,
by May 5. The URL means “HD Hidden No More,” a theme of the papal event linked
to Sabine’s previous awareness campaign in the UK Parliament.
The site will
provide information on hotels, accommodations for special needs of the
affected, and more.
Noting the “immense pressure” on Francis I from ultra-conservative Catholics because of his
purported liberal stance, Sabine said
that Senator Cattaneo and her staff have stressed the non-political nature of
the HD event.
“It’s a humanitarian
one,” he said. “It’s a pastoral event. This is about regarding people with
compassion and humanity. This pope has shown humanitarian credentials unlike
any other.”
South America’s HD-affected: deep struggles
The papal event
builds on work by Factor-H, a small nonprofit organization, to improve the
living conditions in the Lake Maracaibo region of Venezuela, and other sites
where poor HD families cluster. Many HD families in the region live in dire
conditions. In some clusters, many generations of intermarriage mean many
families have passed on the genetic disease.
Maracaibo has played
a key role in HD science. Columbia University scientist Nancy Wexler, Ph.D.,
started the search for the HD gene among Maracaibo HD families in the 1970s. In
1993, the HD gene was discovered. It was one of the first disease genes to be
identified. This research
helped stimulate the
Human Genome Project of the 1990s. Dr. Wexler also was invited to meet the
pope, Sabine said.
“Poverty and disease
are a terrible combination,” wrote Dr. Muñoz-Sanjuan, who has taken aid to Maracaibo and other communities.
“Not everyone in Latin America with HD is poor. However, the main clusters in
Venezuela and Colombia are very poor, and neglected. That’s why we are focusing
on these clusters.”
“These are people
living maybe in families of 16 in a space the size of an American garage on
stilts on a lake,” Sabine observed. “No electricity. No running water.
Nothing. It was so clear
that there were so many people like the people at Lake Maracaibo who are
affected by the disease and who have never had any kind of recognition from
their respective governments or churches.”
Sabine said he hoped the
Vatican event will empower Catholic HD families everywhere to seek assistance
from their local clergy in raising awareness about HD and alleviating the
social burden of the disease.
Dr. Ignacio Muñoz-Sanjuan (seated) with Colombian children at risk for HD (personal photo)
Preparing the logistics
Every HD family
knows the extremely difficult challenge of travel for affected individuals,
whose symptoms include constant involuntary movements, loss of balance, and
cognitive decline. Many require wheelchairs.
To underwrite the
cost of the enormously complex task of transporting the HD families to Rome,
Sabine raised $100,000 from Israel-based Teva Pharmaceutical Industries Ltd. and $50,000 from the U.S.-based,
HD-related Griffin Foundation.
Almost all of the
South American travelers must get their first-ever passports, and in some cases
even birth certificates.
The Vatican is
helping to speed the acquisition of travel documents and to prepare special
accommodations for the families, including lodging at a monastery near the
Vatican instead of a hotel.
“We felt they would
be more comfortable staying all together in a quiet and peaceful place,” Dr.
Muñoz-Sanjuan noted. “We assumed that they will experience some culture shock
and wanted for them to be at ease during their stay and make the experience
more personable.”
Physicians will
accompany the families.
A lonely HD teen in Buenos Aires
On January 6, the
Feast of the Epiphany on the Catholic calendar (the day the Christ child was
visited by three kings, according to the Bible), each of the South Americans
received a red envelope from the Vatican with the invitation to meet with
Francis. (Video recordings of these moments will become available at HDdennomore.com.)
One was 15-year-old
Brenda, who lives in the greater Buenos Aires area, where Francis served as
archbishop. She has juvenile HD, which has severely hampered her ability to
speak and learn. She communicates mainly by texting on her cell phone.
“The children don’t
play with her, so she’s very lonely,” Sabine said. “She has no friends, because
they’re afraid of catching HD. The local school wouldn’t give her access to a
laptop, because they said there’s not much point, because she doesn’t have long
to live.”
“Brenda is my
patient and I have a great affection to her,” Dr. Perandones wrote. “She is
very clever and sensitive. We have a great connection.”
According to Dr.
Perandones, Brenda and her father - from whom she inherited HD - lived with his
sister, Brenda’s aunt, whom she calls “mom.”
“A major concern for
the aunt at the time was the fact that Brenda and her father shared the bedroom,
and his movements during the night scared Brenda a lot,” Dr. Perandones
recalled in an e-mail to supporters about Brenda’s reaction to the papal
invitation.
To lift the family’s
spirits and improve their living situation, Drs. Perandones and Muñoz-Sanjuan
raised funds to make a heartfelt “Christmas for Brenda.” That resulted in the
remodeling of the aunt’s home, including a new room for Brenda, a full
bathroom, and a recreational area.
“Regrettably,
Brenda’s father’s health gradually deteriorated and last year, on the day
Brenda turned 15, he passed away,” Dr. Perandones wrote. (For girls turning 15
in Latin America, the quinceañera is typically a joyous passage to
womanhood.)
Brenda and her aunt (personal photo)
A turning point for HD community
Sabine said
“Brenda’s Christmas” helped inspire the idea of a papal audience.
Dr. Perandones, who
describes herself as “totally Catholic,” met Francis (then Archbishop Jorge
Bergoglio) before his papal election through her support of a group advocating
for victims of human trafficking in Argentina. He “always supported” this
effort, she recalled in her written response to my questions.
“Many indigent
individuals living in the streets of Buenos Aires have neurological and mental
health conditions, including Huntington’s disease,” she added. “Bergoglio was
interested in this issue and gave his support to start a Homeless Rescue
Program."
Dr. Perandones hopes
the meeting will make HD move visible and attune others to HD families’ regular
difficulties and challenges.
“I think that the
meeting with the pope will be a turning point for the HD community globally and
particularly in Latin America,” she stated.
In addition to
Brenda and her aunt, the papal invitees include HD families from the towns of
San Luís and Barranquitas in Venezuela’s Maracaibo region and from the city of
Medellín and the small town of El Difícil in Colombia.
Brenda flanked by Dr. Claudia Perandones and Academy Award winner Eugenio Zanetti, a supporter of the HD cause, after Brenda received news of the papal invitation (personal photo).
A testament to the world
Rooted in Christian
love and compassion, Pope Francis’s meeting with the HD-affected of South
America should reflect the Church’s historic mission of aiding the sick and
defenseless. With 1.27 billion Catholics and hundreds of thousands of priests,
nuns, and other personnel, the Church runs an enormous, vital network of
charitable and social-service entities that could have a significant impact on
HD.
With the biomedical
revolution, the Church has sought to both apply and adapt its 2,000-year-old
moral and theological tradition to today’s bioethical challenges.
The Huntington’s
disease community stands on the bioethical frontier. HD families contribute to
advances in neurological and rare-disease research, and they have pioneered
ways of dealing with the impact of disease such as discrimination, disability,
decisions about genetic testing, family unity, caregiving, suicide, and
end-of-life care.
The May 18 meeting
with Pope Francis will allow the HD community to provide a testament to the
world of human perseverance and solidarity and, ultimately, the need to
alleviate and cure devastating diseases.
“Those suffering
with HD and living in extreme poverty need urgent help to lead a life of
dignity and hope,” Dr. Ignacio Muñoz-Sanjuan asserted.
I hope that
Francis’s Pope’s humanitarian gesture serves as a message to the church and to
world opinion leaders to address the critical need of ameliorating Huntington’s disease.
Janeth Mosquera, of the Colombian HD patient association and Factor-H, hugs an HD man in the town of Choco in the Colombian jungle, April 2016, after delivering assistance (personal photo).
