Blood Brothers

Like many who find out they are HIV-positive, I thought my life was over. Overwhelming feelings of hopelessness, depression, and fear permeated all facets of my life. My feelings and emotions and many of the drugs I have tried and the side effects I have experienced are the same for me as anyone who is HIV-positive. The thing that makes my life different is that my blood lacks a small protein needed for normal clotting to take place, making me a hemophiliac.

HIV hit hemophiliacs hard. Pooled plasma, where the blood of thousands of donors is mixed together and used, was standard practice for years. Once HIV was introduced into the blood supply, it quickly infected those who used high quantities of blood or blood products. The lack of regulations and poor recruiting practices -- such as accepting donations from prison inmates and high-risk populations worldwide, paying donors, and allowing profit concerns to outweigh public safety -- all contributed to this disaster.

Approximately half of the hemophilia population was infected in the years between 1978 and 1986. These 10,000 people were also exposed to the gamut of all known hepatitis strains -- from A through G. I was one of those thousands who contracted HIV and hepatitis C.

Treating HIV infection along with hemophilia and hepatitis causes some unique opportunities for the medical establishment. Although hemophilia has been known about for centuries, treating it effectively is a relatively young science. Many hemophiliacs experience a disturbing lack of knowledge within the medical establishment regarding our particular situation. The National Institute of Health does not have even one protocol regarding hemophilia and HIV. We have been and continue to be the first casualties in the battle around America's blood safety.

Drug interactions are typical with everyone who uses antiretrovirals; however, the effects of these drugs on hemophiliacs can be even more dangerous. Protease inhibitors (PIs) can cause spontaneous bleeding or exacerbate existing bleeding episodes. Passing a PI-induced stone is a very serious matter and requires large doses of clotting factor. Gastrointestinal bleeds for hemophiliacs can be life threatening. During the last year, the Centers for Disease Control published warnings to hemophiliacs about the dangers of PIs.

As an "older hemophiliac" I believe that I was given a gift. In school I was often separated from my friends and classmates due to bleeding episodes. I have often felt isolation and loneliness because of my hemophilia, but that has made me strong. Later in life, with HIV I experienced pain as I watched so many other hemophiliacs die from AIDS. But many of us remain and have triumphed over adversity. In doing so we have become more in tune with our compassion and understanding of our fellow human beings.

Today, I have hope. I have hope that in the coming years the emerging gene replacement therapies and viral vectors under investigation will bring hemophiliacs and all people living with HIV relief from this horrible pandemic.

Back to STEP Perspective Fall 1998 contents page.