Page 10 - BloodBrothers

By Dana Francis, MSW
In November 1988, I was hired as a social work-
er/health educator by the Hemophilia Council
of California. They were looking for someone
who had worked with men, knew something about
bleeding disorders, HIV/AIDS and Hepatitis C, and
who had a background in health education and
counseling. A friend at the time happened to be a
genetic counselor and she gave me a crash course
in hemophilia the night before the interview. I got
hired, was handed a scope of work, and embarked
on a long and amazing journey that I now feel
privileged to call “my career.”
One thing that wasn’t spelled out in the job de-
scription was clear guidance about how to get
men with hemophilia to come together to talk to
each other about the horrific developing health
crisis and the mounting personal and emotional
losses they were facing. A co-worker had success-
fully coaxed a few of the older guys to get together
once or twice by offering to cook them dinner, but
that model wasn’t going to work for me given my
“new kid on the block” status, not to mention my
questionable culinary skills. It became clear that I These men had grown up at a time before there
would need to get creative!
History
In the early 1980s, men with hemophilia began
to contract HIV through their clotting factor. The
pharmaceutical companies were not heat-treating
the product at that time, and recombinant factor
had not yet been developed, so if one plasma donor
out of thousands was HIV positive, that entire lot
of factor became contaminated. Very quickly, a
10 HEMOPHILIA FEDERATION OF AMERICA
growing number of men and boys with hemophilia
became infected, as did their partners, and some
women with bleeding disorders as well. The
medical miracle that clotting factor had promised
in the 1970s became a medical nightmare in the
early 1980s. In addition to living with hemophilia,
now men, boys and their families were facing HIV,
Hepatitis C (HCV), and all the enormous medical
and social challenges that the “3-Hs” (Hemophilia,
HIV, HCV) brought with them. There was also a
huge stigma attached to being HIV positive. AIDS
was considered a “gay disease” and many men in
the hemophilia community did not want that label
attached to them. Some guys with hemophilia were
very angry at gay men for having donated, even
if unknowingly, HIV-tainted blood. Homophobia
was a large and debilitating issue in the bleeding
disorder community, as it continues to be in the
world at large.
Getting Started
The first group of men with hemophilia I met
in 1989 were the older guys my colleague had
previously convened over her home-cooked meals.
was an effective treatment for bleeding (factor
concentrate) and their bodies showed the wear and
tear of their early years. All of them were crippled
from uncontrolled bleeding into their knees,
ankles and elbows; they were grizzled veterans
of the hemophilia wars. They had all been told,
and accepted, that they wouldn’t live past the age
of forty, yet they were tough as nails and were