HBG: My name is Haydée Benoit de García.
HO: Thank you for speaking with us today. What is your background with hemophilia?
HBG: I have a son with severe hemophilia A that is now 30 years old. Since 1996 we started working together with two hematologists and group of parents and founded what today we call The Hemophilia Support Foundation Group “La Fundación de Apoyo Hemofílico”. It is an institution that is dedicated to educating and supporting Dominican families that have a family member affected with hemophilia and the related challenges.
HO: Very good. How many people have a diagnosis of hemophilia here in the Dominican Republic?
HBG: For our population, there are likely about 500 people diagnosed with hemophilia. But in the foundation we have 369 people registered, the majority have deficiency of factor 8 or classic hemophilia A. We also have 15% that are deficient in factor 9 (hemophilia B). The remaining, about 21 people, have a deficiency of factor 10, which is very rare. We also have some with factor 13, 7, and a single individual with factor 1 deficiency.
HO: Factor 1 is what my sister has. Any Von Willebrand?
HGB: Yes, Von Willebrand is currently being evaluated because we didn’t have the capabilities to test it here in our country. Many who have been diagnosed with a factor 8 deficiency really are Von Willebrand and we’re starting to distinguish between factor 8 and Von Willebrand. Because previously all those challenged with hemophilia were diagnosed as factor 8 and that is not the case.
HO: How is the diagnosis process here? What tests need to be done? What does it cost to diagnose here?
HGB: The tests previously weren’t done here. That took the blood samples here and they were sent to Puerto Rico or the United States. In reality, the diagnoses previously were done only in clinics. In other words, the doctors diagnosed the symptoms of those that were suspected to be hemophiliacs. In reality, there wasn’t a proper diagnosis. Starting in 2004 we formed a brotherhood authorized by the World Federation of Hemophilia in cooperation with the Venezuelan association of hemophilia and we did it in on a level through Central America a level with the association of patients. So our personnel went to Caracas to be trained and then they returned here. So we now currently have trained personnel in the laboratory of the pediatrics hospital (Hospital Infantíl Roberto y Cabra) where tests are performed. Two years ago we started a project that is called the quisqueya project (proyecto quisqueya) officiated by The World Hemophilia Foundation to provide correct diagnosis. Even though they established the diagnostic procedure in the pediatric hospital, we’re still doing the diagnosis in the pediatric hospital, this does not guarantee that the diagnosis is correct. So we have had lots of patients that for years were diagnosed as factor 8 when in reality they were factor 9 and vice versa. In fact in one case a diagnosis of a grandfather was made for his grandson. So now we have the confidence that what we are doing is accurate.
HO: What happens with a person who has hemophilia A and is treated for hemophilia B?
HGB: This was happening where people were practically invalids and bound to wheel chairs. The medication that they were taking was not working and I believe that through the mercy of God we were able to survive through these situations. We have some young people completely handicapped and today they are people that are perfectly integrated in the community working, completely active and studying in the university. They are completely normal and active according to the limits of their health condition. We feel very proud to have achieved this. Even though is may appear a small matter that this functions as it should it is so important. An inaccurate diagnosis is the worst scenario that you could have.
HO: What are the goals of your organization here?
HBG: Our goal is that all of the Dominican hemophiliacs have access to proper treatment by medical staff that has been properly trained and that are competent in treating and managing hemophilia no matter the hospital or clinic. That is our goal.
HO: How are you going to achieve this?
HBG: We are working to maintain contact with the Dominican society via workshops presentations, going to hospitals, communicating with medical residents, nurses, etc. We are taking steps in the right direction by …
HBG: Yes by educating and communicating via radio and television. We are always talking about hemophilia. In fact, hemophilia is such an ancient disease that it was referred to in the bible but at the same time, it is relatively unfamiliar to most people.
HO: That is strange, right?
HBG: Yes it’s strange. It was assumed that during the reign of Queen Victoria that it only affected a small group of royalty. But hemophilia affects all groups of people without respect to social class, race, political conditions, or geographical location. It’s rare that a disease that affects such a broad range of people is so unknown.
HO: I’ve never thought about it that way, but it is correct. What are the biggest challenges that you have as an organization?
HBG: The biggest challenge is ignorance. I think that trained personnel, parents that are aware of what their children face is the key to saving lives or not. As parents we need to learn how to differentiate when a child has a bleeding event and how quickly we should consult medical personnel or administer medicine. But also the other challenge for countries like ours, which are countries in economic development, is assuring that the ministry of health understand that with medicine and timely application many complications can be avoided and in the long run result in being much cheaper than not having the medicine available which results in unnecessary bigger complications.
HO: Yes for sure. You said that this organization began with you? Tell us more about this.
HBG: Well I have a son with hemophilia and my son was born here in the Dominican Republic but was diagnosed in Canada in Toronto. I had the opportunity to get attention from trained hematologists, social workers, physiologists, and nurses. They gave me direction regarding what was happening with my son and what his future would be.
HO: How old was he then?
HBG: Six months. This all allowed me to understand, with input from a social worker, that I was heading towards both an emotional and physical handicap situation. My question was the following “What do I need to do to avoid this?” She told me to learn everything that I could about hemophilia. That’s what I have done. When I returned to my country I found that medical professionals and families did not have access to proper information. This bothered me a lot. Then, in 1996 I continued caring for my son in the United States by traveling there. In 1996 Dr. Rosa Nieve invited me to speak with a small group of families and share with them my experiences with raising my son. When I finished, the parents called me doctor. I said that I was not a doctor but a mother like them. The only difference was that they had been taught what I needed to do and I decided to learn. This is the challenge that I’m presenting to you. When I returned to my home I said to my husband and my family that I wanted to do something about this because the Dominican families deserved to know what was happening. Many mothers didn’t know much about the disease and they harbored many taboos regarding their children dying during adolescence. So then on July 22nd of 1996 we created the Hemophilia Support Foundation. Since then we have transformed many sad faces into smiles. I have had the opportunity to see how the warmth of people, in addition to changing environmental conditions, can enable others to hold their heads high and view the future with optimism and happiness.
HO: And with hope.
HBG: Yes with hope and happiness. I remember that I said in the first meeting that in the same way that we embrace hemophilia we are going to change it and a young person asked me how we could take that approach against a disease that had taken so much from him. I told him that when you understand how many obstacles you can overcome you’ll understand just how many things that can accomplish.
HO: How beautiful, really.
HBG: We have an activity that is very beautiful that we call a camping retreat. The camp has taught them so many things. You listen to the song that says “yes I can” . We teach the children that yes they can do activities that they enjoy, but with the resources to provide adequate supervision and know that they can play soccer, volleyball and that there is a medical department that won’t allow their condition to get too complicated.
HO: This is great. What role does The World Federation of Hemophilia play?
HBG: We are the national organization member for the Dominican Republican. Through the Federation we have been able to be leaders. Through the federation we’ve learned which direction to follow and how to make good arrangements with the health authorities. In addition they have helped us set up a process for succession, which is the natural transition. Our camping retreats are a laboratory. We see how they are progressing and learning. Nature requires that we develop a younger generation to take over.
HO: How much does a diagnosis cost?
HBG: To obtain a proper diagnosis here is very expensive but with the materials obtained through the project we are doing it free of charge for all patients. This is for all patients. It doesn’t matter in which city they’re located. We do registration first and we leave the registration open-ended. For example we recently have had two newborns diagnosed, so we need to keep insisting to the authorities that all have access. When there is any suspicion of symptoms we need to get the proper diagnosis in the hospitals after birth.
HO: Who pays then when someone can’t pay?
HBG: Nobody pays anything.
HO: The government then?
HBG: The government and also through an international foundation that has given us the funds. We freely accept the patients and services are free.
HO: The treatments as well?
HBG: Exactly. We always receive international donations and we’ve provided the treatments free of charge.
HO: Which organizations are providing funding?
HBG: We received a lot of help from a woman in the United States named Laurine Kelly via Kelly Communications. Also, AmeriCares has donated, a German laboratory through the Malta Order, and also through a foundation here that is called La Fundación Solidad Niños de Jesus. We receive a lot of medicine for factor 8.
HO: Very good. How do you address ignorance as you mentioned earlier? Are there other changes?
HBG: There are other changes that for us are very important. It is that hemophiliacs are accepted as hemophiliacs. We have a lot of cases especially with youth where they are embarrassed to let others know that they are hemophiliacs. We are working on that. Incredibly, those with the most economic means are those that are most reluctant to accept that they are hemophiliacs. We’ve realized here at the Foundation that those youth that work with us are the happiest because they are accepted as they are, and they are not embarrassed to reveal their medical condition. This is what I think that for me we need to fight for the most. I tell them to lift their heads high and that they are not inferior to anybody and we have had good progress, but not as much as I would like. It makes me sad to talk with mothers about their children that are not accepted by their peers or are having social problems. I didn’t have this problem because from very young I showed my son’s friends how I injected medicine in him and how I prepared the medicine. This guaranteed that they accepted him for who he was and secondly they protected him. Also, they were his friends in elementary school through the university level and they continue taking care of him like a brother. Because I taught them that he was not inferior to anybody. The only thing was that he was special.
HO: I love you more and more with every question. Is there anything else that you would like to share or do you have any additional thoughts?
HBG: For a long time I asked myself why my son was born with hemophilia if it was one in 20,000 males born with it. One day while preparing a conference for a congress of the federation I read a statement that said “Behind every important man there is a woman” and I changed it to say “Behind every special child there is an extraordinary mother.” At that moment I understood why my child was born with hemophilia. Because this had allowed me to be an agent of change for many families that due to their economic situation would not have allowed them access to information. Today we are a great big family.
HO: Thank you very much. This was perfect. Beautiful. You are very impressive person.
HBG: One of the most beautiful experiences that we have had on our retreats was a young man from the United States that wanted to come to our retreat. He had inhibitors. When he came with his father I told the children that I would give a prize to the first to teach them three words in Spanish
HO: He didn’t speak Spanish?
HBG: No. His father said that he had not seen a smile like that on his sons face for a long time. He understood that all those present had the same condition. He understood that he had been sad for a long time but that others with much less opportunities lived happier. He returned the next year. This was a beautiful experience for us. We are not the richest, we are not the most developed country, but we have an immense thing that we give liberally and that is love.