By Hannah Brockhaus
Pope Francis’ gathering this week with a group of Huntington’s disease patients was a major inspiration for those seeking to increase awareness and research about the condition.
“In the U.S. this is HD Awareness Month, so we’re working on just telling the story of families affected by Huntington’s disease, and this brings it to a whole different platform,” said Louise Vetter, CEO of the Huntington’s Disease Society of America.
“Really, with Pope Francis setting the tone I think it offers so much hope and inspiration.”
On Thursday, Pope Francis became the first world leader to publically recognize the plight of those suffering from Huntington’s disease, as he welcomed an audience of some 150 people with the condition. The pontiff stayed for nearly an hour after the audience to offer each individual a hug and a greeting.
Huntington’s disease (HD) is an incurable genetic brain disorder characterized by rapid, uncontrollable muscle movement known as chorea. As the disease progresses, it can lead to loss of control over speech and memory, dementia and death.
The gene which causes Huntington’s was discovered nearly 25 years ago, but there is still no cure and relatively limited treatment options.
This is especially true for people living in South America, where prevalence of the disease is almost 1,000 times higher than in the rest of the world and often combined with extreme poverty. Because the disease affects families generationally, they are often caught in a cycle of need.
In 2013, Ignacio Munoz-Sanjuan, a neuroscientist working to develop treatments to fight the progression of Huntington’s disease, traveled to South America to see first-hand the difficulties faced by communities with high numbers of Huntington’s patients, particularly in Venezuela and Colombia.
While there, he noticed that a lot of the help people needed wasn’t related only to the immense difficulties of the disease, but had even more to do with living in conditions of extreme poverty, such as no food, no water, no clothes, poor housing, and almost no medical support.
This led to his founding of Factor-H, a humanitarian project specifically to help with non-medical related issues for people in communities with high concentrations of Huntington’s patients.
One of the biggest problems faced there, he told CNA, is that there is no institutional support to provide food or assistance to the communities.
People aren’t able to work because they are often caring day and night for multiple terminally ill family members. And in some communities, “people barely have enough food to eat once a day. They have no sanitation, no running water,” he explained.
Compounding the challenge is the fact that many Huntington’s patients require up to 5,000 calories per day – more than twice the caloric needs of an average healthy adult. Finding adequate nutrition when food is already scare is often impossible.
“In one of the towns in Venezuela, probably the biggest cluster (of Huntington’s patients) in the world, I met a Catholic priest who is there locally and who is trying to do what he can, but there’s nothing institutionalized.”
Munoz-Sanjuan found it very difficult to find ways to help in Venezuela and ran into a lot of roadblocks. It’s hard to send money because of the rate of inflation, he said, and after the border with Colombia was closed he could no longer send food via the neighboring country.
He said that he thinks the more people know about the problem, though, the more they will want to help.
“The problem is concentrated in a few locations and there are not that many people, a few thousand people affected in each one of these towns, so it’s a manageable problem if we get organized. But I think that’s really where the Church can play a big role,” he said.
Because the disease is relatively rare, it is not well-known, and non-governmental organizations generally focus their support elsewhere.
Munoz-Sanjuan also felt “that the scientific community owed something back to those people because they participated in studies for many years that led to the cloning of the gene, but they still don’t have access to the genetic test and really things haven’t changed much for them.”
“I thought that one of the few institutions that could potentially help would be the Catholic Church,” he said.
This gave birth to the idea for the global meeting at the Vatican and the audience with Pope Francis, which took place May 18 with some 1,700 people from 16 different countries.
The meeting with Pope Francis was called “HDdennomore” (pronounced “hidden no more”) and put on in special solidarity with South America. Two families from Venezuela, two from Colombia, and one girl from Argentina – all affected by the disease in different ways – were brought to the Vatican by Factor-H to meet the Pope.
Present at the audience, in addition to 150 Huntington’s patients, were members of the medical and scientific communities who treat patients with Huntington’s and perform research on how to prevent the disease or slow its progression.
“I know there are some people from Caritas and some cardinals that are really interested in helping, but I think that most Church officials, like many people in institutions, have never really heard of the disease, or the magnitude of the problem in their countries,” Munoz-Sanjuan said.
He hopes this event is the beginning of a conversation and will help shine a light on the disease and on what the conditions are like in many communities.
For Vetter, the meeting was a big step forward in efforts to combat the “devastating illness.”
“We really have a call to action to raise awareness of Huntington’s disease and the need for community to really be involved caring for these families,” she said.
“We’re thrilled to be part of this global effort and be able to pull off that shame and offer the opportunity for these families to feel validated,” she continued. “To be able to help society offer that reassurance and for the Church to really set that tone – it’s incredible.”