Hemophilia Archive

Lest We Forget: Ryan White

This morning my friend, Barry Haarde, and many of those on Facebook reminded me what a special day it is. The anniversary of the passing of one of the heroes of the HIV/hemophilia community, Ryan White.

I recently met someone my age who had never heard of him. It seems hard to believe, given that he was a pioneer in advocacy for the rights of those with HIV, at such a tender age. And HIV in the 1980s was paramount to the plague, the Black Death, sweeping the country and causing people to react with fear, superstition and discrimination towards those who contracted HIV.

Ryan was born December 6,1971, to Jeanne White, in Kokomo, Indiana, who learned three days later that her baby had hemophilia. Treatment then consisted of factor concentrate injections which were not pasteurized or treated to remove viruses. Shortly after surgery on his left lung in 1984, doctors informed Jeanne that Ryan had contracted HIV. At age 13, Ryan was given six months to live.

What we didn’t know then and what we know now staggers the imagination. No one could have made up a sci-fi story as incredible as a microscopic virus infecting the entire nation’s blood supply and leading to the deaths of 10,000 with hemophilia. Ryan was one of them, and one of the most famous. Why?

His fame stemmed from how he handled discrimination in the Indiana school system, which would not allow him to attend classes. Ignorance about the disease caused mass panic and hate crimes. Ryan was shunned, harassed; one night a bullet was even fired into his home.

Ryan and his mother took the school discrimination case to court. Eventually, Ryan won. He was allowed to come back to school. But, people’s minds didn’t change so quickly or with the court decree. Ryan continued to face harassment by schoolmates, and parents pulled their children out of school. Ryan faced it all with characteristic grace, dignity and acceptance.

Ryan eventually found a school that welcomed him in Cicero, Indiana:  Hamilton Heights High School. He thrived there.

His story of courage found its way to the media, and Ryan became a celebrity. A made-for-TV, a biography, many television spots…. and even friendships with Elton John and Michael Jackson. Ryan was hemophilia’s earliest advocate: on March 3, 1988, Ryan spoke before the national commission on AIDS, about hemophilia, HIV, discrimination. It’s fair to say this child–a suffering child–changed the way everyone viewed HIV. He was a pioneer, a role model, and transformational leader.

He died on April 8, 1990, Palm Sunday, surrounded by Jeanne, his sister Andrea, his grandparents and his friend, Elton John. Jeanne remains fairly active in the hemophilia community and attends various events to remind us all of the importance of advocacy. Ryan’s impact goes far beyond his short time on earth, and he will eternally be remembered as a compassionate child who suffered, transformed his suffering into a mission for a greater cause, and left a lasting legacy so that others could avoid the discrimination he endured. His life is a blueprint of hope and courage in the face of alienation and pain, like so many others in our very special community.

Preserving Our Past

I recently hauled out about 35 8mm video tapes of my family going back to when my son was born. The early ones are grainy, not great quality–they are after all about 23 years old and technology has surely changed–but at least we have some memories. The more recent ones are bright, exciting, lively, captivating. Maybe it has to do with the tape quality, but maybe it has to do with all the stress we were under from that time, as we spent a lot of time worrying, in the hospital, and under a lot of pressure.

Now I am converting them all to my iMovie, backed up on external hard drives, digitized and immortalized for all time. I can edit them, look at them at my leisure, add titles, special effects, voice overs… even improve their quality. You definitely feel a sense of closure when you have secured your family’s history.

This is also what Barry Haarde is doing–preserving our hemophilia history by creating the “Hemophilia Archive,” collecting in a website everything he can find related to hemophilia. It’s a daunting task, but he is compiling what will be the best and most definitive collection of hemophilia videos, newspaper articles and books.

Barry’s work was just profiled in my newsletter PEN, and he starts our article by asking who is Ryan White? Excellent question. We have a new generation, raised on excellent products, prophylaxis and tons of educational materials and social support, that hopefully will never endure what our children endured (extreme ignorance? Remember there wasn’t internet, Google or even a book on hemophilia in 1987!) or what the previous generation endured: HIV, hepatitis C, the deaths of thousands of fine young men.

Barry is a man on a mission. I urge everyone to sign up to receive his installments of the hemophilia archives, and to contribute something. Recently, I sent him the first two copies of PEN, started in 1991. Very amusing; a total circulation of 50 and Xeroxed. I also sent him the cover to the People magazine produced the week my son with hemophilia was born. Right on the cover is breaking news about the Ray brothers (do you remember them?) who were fire-bombed out of their trailer home in Florida, because the three boys had hemophilia and HIV.

Barry and his older brother John were born with hemophilia and each contracted HIV. John died, as did Barry’s brother in law. Barry is creating the Hemophilia Archive to preserve the memories of our past. Our past, the mass contamination of thousands, is truly unique in the annals of medical history. Each life deserves to be remembered.

Coincidentally, I am going this week to see the Boston premiere of “Bad Blood,” the new documentary about the HIV contamination of the 1980s. I’ve seen it already, have reviewed it in this issue of PEN, and on Wednesday night will take my family to see it. I urge you all to see it as well, and to help Barry build his archives.

Take a break from your own home movie archives, as I will, or from recording the present–Thanksgiving, hockey games, school plays– to help our community preserve its precious past. And thanks to people like Barry and Bad Blood director Marilyn Ness for helping to preserve our past. (Archived photo of Laurie and Brian Craft, our hemophilia comedian, another fallen hero)

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