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Saturday, April 11, 2015

Ryan White: the face for thousands!

This past week was the 25 anniversary of the death of Ryan White at age 18.

This has caused me to reflect on what this young man, whom I never met, meant to me.  Early in the 1980's, I was working at Texas Instruments when the first cases of a new disorder was hitting the hemophilia community.  Until this point in time, I had always disclosed my hemophilia to close co-workers, not making a big deal about it.  Feeling that this gave me some protection in case of an accident where I could not speaking for myself, that others would know what to do and to share the information.  This had been a long pattern in my life, having never lived around extended family and moving every four years because of my father's military service. My early family life was dependent on friends and neighbors to fill in the role of an extended family. So it was natural that I would continue this practice in my early adulthood when my wife and I moved to Houston for a job, our neighbors, co-worker and friends would fill the role of extended family.

But then something curious happened, there were news articles and television programming, reporting the first six cases of a new mysterious illness affecting hemophiliacs.   It was affecting others as well  and the early groups were dubbed the 4H club by some.  These were homosexuals, hookers, Haitians and hemophiliacs.  The reports spread more fear that illumination about the new disorder, because they alway said that this new mysterious disease was always fatal and that no one knew how it was spread.  I took one look at this list and took steps to protect my wife because at least two member constituents of the 4H club were there because of sex.  I did not understand why Haitians were in the list but I did understand that I was in the other constituent group hemophiliac and that there was a risk to me.  In early 1983 we moved into our first new home and because of the news reports I was no longer sharing my medical information with my new neighbors because of how the general public and in some places state government agencies were responding to this new disease.  Ryan White a child with hemophilia was prevented from going to school and his neighbors ran the family out of Kokomo Indiana.  The Ray family had their home burned down after the three boys with hemophilia disclosed to their church minister that they had the newly identified disease.  These events had a chilling effect and drove my medical information, particular my hemophilia underground.  There was nothing I could do about the co-workers I had previously told but to respond to their questions by saying that I was being tested every six months, which by late 1985 was true.  By then I was positive for the newly named virus HIV.  Years later I would find out that stored samples of my blood showed that I became positive for the virus during a six week period in the summer of 1983 shortly after the birth of my son.

Because I was a young father and husband, I took the steps I felt were necessary to protect my family and my career by not disclosing my hemophilia to anyone other than medical professionals, and even they did not always respond positively to the information.  At the same time my hemophilia was being driven underground, Ryan White was fighting to get back into a classroom and I was cheering him on privately.  But the experience of the fear I felt from having to worry about how others would respond to my having hemophilia and HIV has changed me forever.  I am less open, I let far fewer people into my inner circle of friends and I am more guarded with people who do not understand hemophilia and HIV well.  It was not until I lost my chosen career and my son was of an age that I could explain things to him, so that he could protect himself against ignorance, that I finally got my voice back regarding my lifelong advocacy for hemophilia and the newly acquired HIV and how much I was thankful to Ryan White for filling the gap with his courage.  From my point of view at a time when thousands of us with hemophilia and HIV were unable or unwilling to stand up and speak for ourselves, Ryan White filled this role, maybe reluctantly but always bravely.  Twenty five years after his death, some of us are still here and we remember the venerable role he played on our behalf.