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Living in a comfortable house in Cherry Hill, a pleasant middle class township in New Jersey, Elaine DePrince and her family seem to be very ordinary people. They are, however, ordinary people turned extraordinary by the AIDS crisis. But it wasn't always like that.

Elaine and her husband, Charles, a marketing and management consultant, had two children, Erik and Adam. Both sons and Elaine herself suffered from a bleeding disorder called von Willebrand's disease. Later they decided to adopt a child, Mike. He was deaf and suffered from severe Hemophilia A. Mike, who had a sharp mind, would become a computer whiz.

Within a few years the DePrinces were asked to adopt a pair of brothers who were also hemophiliacs. Charles, who became known as Cubby, was four years old. Theodore, or Teddy, was five. Like Mike, Cubby and Teddy quickly became accepted and loved members of the DePrince family.

As HIV struck the DePrince family, it was also striking hemophiliacs across the country; the hemophiliac population has been devastated by HIV. There are approximately 20,000 people with Hemophilia A and B in America, and about half of them are HIV positive. Approximately 4,000 hemophiliacs have died of AIDS to date. And Cubby and Mike are among the losses. The two of them died within nine months of each other in 1993 and 1994. Mike was 15 and Cubby was only 11. The double tragedy changed the DePrince family forever. "We learn from adversity that life is so precious and so wonderful that you can't waste one itty bitty second of it," Elaine explains.

"I was so incredibly angry and the grief was so debilitating that I knew I had to do something."

And she was not about to become a victim. She decided that a way to honor the memory of Mike and Cubby, and to give their lives the significance they deserved was to work for justice and compensation for hemophiliacs, against discrimination towards people with HIV, and towards a better understanding of AIDS among all people. She would take control. The first thing that Elaine did was to become an educator, speaking to schools and colleges about the dangers of HIV.

Young Teddy, the surviving HIV-positive son, joined his mother on the speaking trail. He overcame his naturally shy tendencies to talk openly about HIV and how it had affected their family. By sharing his story with others, he broke through the comfortable cocoon of the suburban world in which he lived. If HIV could infect him, it could happen to anyone.

The emotional impact that the mother and son have had on their audiences is extraordinary. Even others living with HIV who share their mission as educators are moved by the strength of their words and the fire of their spirit. Says fellow HIV educator Tom Zagari, "It struck me while I was hearing them speak that I was in the presence of two truly amazing people. This monumental tragedy had occurred and they had absolutely no room for the anger or self-pity that most of us would feel in the same situation. They had taken all this energy and focused it on HIV education and prevention. I realized what an unselfish gift they are giving us all, including those of us living with HIV."

Commenting about the challenges of living with hemophilia and HIV, Teddy says, "I had to grow up real fast." The deaths of his brothers hit him hard, but also spurred him into action. Teddy became a symbol for all hemophiliacs during two years of legislative lobbying in the state capital of Trenton. He testified at state legislature hearings, and attended every committee hearing and chamber vote in support of the Hemophilia Justice Act. This act opened a window in the statute of limitations so that people with hemophilia could fight for compensation years after the tainted blood products had been distributed. It took, after all, many years before most of the victims of the contaminated Factor VIII even knew they were infected with HIV. Teddy, with his mother by his side, won the political battle when the act was passed in 1996.

Elaine has also become quite comfortable in her role of educator. "I don't get nervous. I have a message and I give it. It's a job that needs to be done." Although Elaine is warm and bubbly, she can behave like a tiger -fearlessly protective of her children. From the state legislature to the PTA, she speaks boldly and courageously. She has built a reputation as an activist who draws attention to HIV and an advocate for those infected with it. Other parents in the hemophilia movement treat her like a celebrity. "I get a lot of admiration, but I just want to be one of the guys. I feel a little left out sometimes." She is active in various AIDS organizations and jokes about how the gay men perceive her as a mother figure. She points out that the hemophilia movement has learned many lessons about getting results from vocal and visible organizations such as ACT-UP.

Apart from hitting the road to tell their story, Elaine sat down and wrote a book titled Cry Bloody Murder. Through the book, she tells the story of how HIV came to infect the hemophiliac population and how it could so easily have been avoided. The book investigates what went wrong and includes input from many physicians and scientists. Interwoven in the story of suppressed information, incompetence and corruption is the story of the DePrince family and how they have come through the experience.

Although Elaine had written children's books, she did not have a literary agent, so she sent queries to 96 publishers. Surprisingly, nine accepted it, with four sending contracts. She eventually chose Random House and the book will be published in the summer of 1997. (As this article is written several months before the publication of Cry Bloody Murder, four companies who manufacture and market blood products are actively trying to get hold of the unpublished manuscript. Controversy is brewing even before the book hits book shelves across the country).

Robert Massie, the author of Nicholas and Alexandra, describes the book as having "historic proportions, one that could have an explosive and beneficial effect on American health care." Through this book, Elaine shows that there are lessons to be learned from the tragedy of HIV in Factor VIII blood product - hopefully so that nothing like this ever happens again.

On the home front, HIV created many challenges for the DePrinces: not only the difficulty of the children's diagnosis and illness, but also persecution from neighbors. Their pets were poisoned, a rabbit hutch was broken to bits by an ax and some of their neighbors sued them about the noise from an air vent over their indoor pool. (The DePrinces won the case but it cost them $30,000.) One neighbor even told an official in the Camden County Health Department that "she couldn't wait until all the children were dead." Many local children were not allowed by their parents to play with the DePrince children. Through it all, the DePrinces maintained their dignity, pride and positive outlook.

If Elaine is an outgoing "force of nature" Teddy is quite different. Slightly built and handsome, the sixteen year old has a quiet demeanor. Behind his calm exterior is his passion for music. When the physical or emotional trauma of HIV is too much, he escapes into melodies and songs. He plays piano and guitar, and sings in the baritone-tenor range.

Young Teddy has known that he was HIV positive for eight of his 16 years, although he was probably infected since he was a toddler. Living with hemophilia and HIV often causes him to be fatigued, so Teddy can't play sports like football. He also has an abbreviated class schedule. Unlike other high school students, Teddy has to take his clotting factor with him. Through diversity, Teddy remains very optimistic about the future. He plans to go to college and eventually teach choral singing.

A few years ago Teddy suffered from dementia, weight loss and fatigue. Today, though, with combination antiretroviral treatment, he appears to be the picture of health. He is taking Crixivan®, AZT, Epivir®, Bactrim® and IgG (Gamma globulin). A model of compliance, he religiously organizes his pills every Saturday night for the next week and takes them faithfully.

Elaine, supported by her husband, has committed her life to working for justice and compensation for hemophiliacs as well as against discrimination towards people with AIDS. She knows that there is a long way to go. "I feel we are on a treadmill with AIDS. And until there's a cure, we're going to be on that treadmill. We also need to increase testing of drugs on women and children. Right now there aren't enough approved anti-HIV drugs to treat them." She also points out that although the number of new cases of HIV in New Jersey is falling overall, it is still rising among women.

Elaine and her husband have started the Cubby and Michael Foundation to help children living with HIV. They feel that it's important for children not to have to go to school with a secret or sense of shame because of their HIV status. Through the foundation, they plan to produce books for children which Elaine will write and Erik, an artist, will illustrate. The books will also include teachers' guides and parents' notes.

In this unpredictable world, out-of-the-ordinary occurrences often happen to ordinary people. But it's their response - not being victims, but taking control to become individuals who make a difference - which can make people extraordinary. And Teddy and Elaine DePrince are two extraordinary people in the battle against HIV.

Cry Bloody Murder by Elaine DePrince is published by Random House and will be available in bookstores nationwide in June, 1997.

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