Marilyn: United States
January 1, 2008
Marilyn. (Photo: EGPAF)
Marilyn is the Program Coordinator for the "Mas Vida" program at the AIDS Taskforce of Greater Cleveland. She is a spokesperson for EGPAF's Generation Free Campaign, and regularly speaks to college students across the country about the need for increased HIV awareness and funding.
Like many other families, mine came to the United States from Puerto Rico in search of the American dream. America: where you could get a good job, health care, and the opportunity for a better education. As a child this is what I understood America to be. Unfortunately, close to two years after arriving in search of that dream, I was told that both of my parents and my baby sister, Ana, were infected with HIV.
At the age of nine, I was forced to grow up faster than most kids. This illness kind of robbed my siblings and me of our childhood. It also robbed me of both my parents and my baby sister.
At first, my parents were the only ones that were receiving treatment. At that time, there was nothing for children. This was around the time that Elizabeth Glaser was taking a stand for her children to get HIV medication.
Elizabeth’s passion was able to open the doors of opportunity for all the children, including Ana. If it wasn’t for Elizabeth standing up for the rights of all people with AIDS, especially children, Ana and thousands others across the U.S. and the world would not have received the medications they needed to survive. It’s nice to see children who were born with the disease who are now adults and still healthy. They’re living their lives. We have Elizabeth Glaser to thank for that.
But it doesn’t always work out that way. It didn’t for Ana.
Ana was really a typical teenager and part of that was being stubborn. She just didn’t want to take her meds.
For Ana and many kids like her, there are horrible side effects that go along with AIDS medications. At one point, she was taking 128 pills a week. It would take an hour for her to swallow one small pill. She couldn’t take it. She was nauseous. She was vomiting. She would get angry at my siblings and me for making her take them. She would cry. Toward the end of her illness, she was always weak and had very little energy. She lost her spunk. It was like she was a totally different person when she was taking her meds.
So one day she decided to stop. That’s it. No more meds. She just wanted to be a normal teenager. She saw other adults and young children with HIV who weren’t taking any medication and they were still healthy, so she figured, “Why not me?”
After she stopped taking her medication, Ana got even more tired but still refused to go back on her meds. Once you’ve seen someone suffer so much because of HIV, it’s tough to keep arguing with them. We finally agreed and said, “OK.” It was one of the hardest decisions my family has ever had to make. I knew that going off the meds was going to really shorten her life. Today, I still question whether or not going off the meds was the right thing for Ana to do, but something inside tells me that we did the right thing.
Close to two months later, in 2004, Ana passed away. She was 16. I thought her death was going to be harder than the death of my parents because she was so young. But she was ready to go. She had fought a long hard battle that most people can’t even understand. At the funeral, there was sadness. But it was also a celebration of her life.
Ana was an incredible speaker who had a gift of connecting to people of all ages. Her main message was to protect yourself. Especially when teenagers would say, “Oh, nothing can happen to me,” Ana was able to reach them. She wanted to change lives and that’s exactly what she did.
I know that Ana and I were privileged to work so closely with EGPAF during the past few years raising awareness, which is so important. But we can’t stop there. We have to keep working together and we have to continue to invest the necessary resources until we win this fight. It’s not about how much, it’s about how many. There are a lot of lives to be saved.