Q&A With Taíse Cadore

HD will get new attention across Latin America in 2013, as Rio de Janeiro hosts the World Congress on Huntington’s Disease and Enroll-HD gets underway across the region, says Taíse Cadore, president of the Associaçäo Brasil Huntington (Brazilian Huntington’s Association), a nonprofit support and education organization based in Säo Paulo. She has been involved in the association since 2003 when a family member was diagnosed with the disease. She knows from personal experience how difficult it can be in Brazil and in other Latin American nations to access information and find knowledgeable medical help—but, she predicts, that is now beginning to get easier.

Q: For the Brazilian HD community, what’s the significance of having the World Congress in Rio?

It’s a very big moment for HD in Latin America, not only because of Enroll-HD but because of the Congress. This is the first time it happened in Latin America—a milestone. The Congress is our opportunity to say to the government and to others: Let me tell you about Enroll-HD, let me tell you about this disease. It is an opportunity to get government, families and the technical community focused on HD.

Q: What’s the current state of knowledge about HD in Brazil, and what needs to improve?

Here, we have two realities. In cities such as São Paulo, Rio, Brasilia, Belo Horizonte, Porto Alegre—the big capitals—there are one or two physicians who specialize in HD, but it’s difficult and sometimes expensive to get an appointment. It’s not very accessible. In the countryside HD is not very well known. There may be no access to a lot of care that HD patients require, like nutrition, physiotherapy, and so forth. We as an association are working on this, but we don’t have the resources or support and sponsors to send physicians there who have the knowledge to train the local physicians. Enroll-HD will provide an opportunity to say [to those doctors]: These are the centers in Brazil that are an excellent reference, and you can find a lot of information there.

Q: What kinds of projects is your HD association working on?

Our mission is to communicate and link people. For example, medical students look to us to understand the disease, and we put them in contact with families as a way for them to get more knowledge. For people who just found out that the disease is in the family, we have a list of doctors who are ready to treat. And if someone from an HD family calls with the name of their doctor, we’ll call that person and introduce ourselves—then, if another family from the same city calls, we’ll refer them to that doctor, who is already treating one family.

Another recent example: A new company that offers home care services found us on the Internet. We educated them about the services that HD patients need and now we can present this as a possible resource for families. We are also working on a project to present to the government of Brazil to include HD training in the health system. A lot of physicians don’t even know about the disease. So for example, if you need to retire early because of your HD, a physician or retirement systems expert may not understand the nature of the disease. Some of them would say: Come back in six months and you’ll be better. These are the kind of issues that we face daily.

Q: What do you think Enroll-HD has to offer in Brazil?

Latin America has so few resources. Enroll-HD will not only be an opportunity to find a cure but also a way to get more resources to families. It’s not that we’re expecting that the physicians will cure participants, but it will be much easier to get more health professionals involved in HD. This is the most important result for the families in Latin America. We are coming from a history in which nobody knows how to deal with it, and there’s no point of reference. Now there is an opportunity to start to talk about HD. All these points are linked. Without Enroll-HD there’s no point in talking so much about the participation of families. With the study there’s a real opportunity for countries that don’t have resources, and for dedicated professionals who can deal with HD.

Q: You gave a talk at the World Congress titled “The role of HD families in driving scientific progress”. What did you say?

Why families should be part of scientific studies like Enroll-HD, and what we, as families, get back from participating. In the community at large there is so little technical information. By participating in this kind of study you will better understand the science. You can build your hope with knowledge. This is essential for families nowadays. Families have to be more aware of what’s happening too. Some families, when they find out they have the disease, question what will happen should they have children. For the most part they don’t understand the genetics. We need to spread this kind of knowledge. The big message is that we need this kind of opportunity to change the history, from a disease nobody knows about to one where there is knowledge. This is my broad view. I hope I’m right!
This story was originally published in the Autumn 2013 issue of Enroll!