The Common Factor, no. 8

June 1994

The Common Factor

*23

June 1994 The Common Factor.23

NHF Executive Director Resigns
by Corey S. Dubin

IN JANUARY, 1994 the Executive Director of the National Hemophilia
Foundation since 1981, Alan Brownstein, announced his resignation effective May 31. The announcement
was greeted with satisfaction from
much of the hemophilia community
who had been calling for Brownstein
to step down since 1989.
COTT welcomes this resignation,
but believes that Brownstein's record
must be placed in the proper perspective. For many Alan symbolizes
NHF's terrible record on AIDS.
However, while Alan bears a piece
of the responsibility for what has
happened, it is important to not
scapegoat him for the entire NHF
failure to respond to the crisis. The
problems run much deeper than any
one individual. They are institutional and can be traced to the
organization's beginnings.
The multiple defections of NHF
Chapters of the last few years are
nothing new. NHF has always had
trouble satisfying the needs and aspirations of its local chapters.
In 1962 the largest independent
hemophilia organization in the country, the Southern California Hemophilia Foundation, refused to affiliate
with NHF because of philosophical
differences. Al Dubin, SoCal President in 1962, stated "NHF was failing to provide adequate advocacy for
those with hemophilia and their
families. NHF's staff had grown too
large and they were not delivering
for the community." In recent years
the Hemophilia Association of New
Jersey and Hemophilia of New York
have also seceded from NHF.
Even if the entire Board were to
resign, NHF could remain unresponsive to the needs of the community,
in part due to its ongoing close rela
tionship with the blood industry.
NHF remains a part of an Iron Triangle in the hemophilia world. Industry, NHF and the medical
community are the three angles of
power in the Business of Hemophilia.
Brownstein himself has said that
NHF serves three constituencies:
doctors, the blood products industry, and hemophiliacs (sic). Herein
lies the great contradiction of NHFit is impossible to reconcile serving
such oppositional constituencies.
They cannot possibly advocate for
the empowerment of persons with
hemophilia and support the Medical
Industrial Complex that has played
such a central role in keeping us
down. Let us not forget that it was
these very same drug companies that
infected thousands of us.
Brownstein was just one player
in an institution that cannot possibly
represent our collective and individual aspirations. Alan's resignation, or that of any individual(s),
does not change the need for community-based organizations.
An understanding of the institutional contradictions of NHF led to
the formation of Hemophilia Federation in April 1993 by members of
COTT, Hemophilia Association of
New Jersey, Hemophilia Northwest
and Hemophilia of Acadiana.
The Federation aims to be the
voice and advocate for persons with
clotting disorders. It is accomplishing this goal by the fact that the Federation is persons with hemophilia
and their families. The Coordinating Council is dominated by persons
with hemophilia, persons with hemophilia and HIV, and parents of
children with hemophilia. The Federation will articulate the needs of
the hemophilia community while de
veloping and implementing programs to meet those needs.
NHF, along with the medical/
social community and the pharmaceuticals have spent thirty years cultivating and consolidating the
dependency model. In part, through
NHF's work the community was
colonized in terms of how we view
ourselves, our health care and our
very existence as individuals. We
lost sight of ourselves as we were
raised as a community to be wholly.'
dependent on the medical establishment, the drug companies and NHF.
For many in this community it was,
and is, this dependency that brought
us this nightmarish reality we are
currently experiencing.
NHF always possessed a paternal view that was such a central component of how we were defined by
the medical establishment and the
drug companies.
Brownstein was indeed successful in returning NHF to financial
health. This was accomplished in
two ways. First of all, Brownstein solicited support from the drug companies in the early 1980s. Direct
dollar support, monies for specific
NHF programs as well as important
grants for doctors on NHF's Medical and Scientific Advisory Committee (MASAC) greatly improved
NHF's overall financial picture. To
solidify this support NHF moved
ever closer to the drug companies.
In addition to the drug companies, NHF's finances were greatly enhanced by receiving millions in
federal AIDS dollars...yet they failed
to use these dollars to effectively respond to the AIDS crisis.
NHF's failure to respond to
AIDS in the interests of those with
hemophilia and their families cannot
all be laid at the doorstep of Alan
Brownstein. It would be an injustice
to him as well as a disservice to this
community to conclude that NHF's
problems will end with the resignation of the Executive Director
The AIDS crisis demands a
broad understanding of the institu
tional problems that played a key
role in infecting this community.