AIDS Activism Benefits Us
All
by Kelly Saffreed Harmon
Some good is coming out of
this horrible epidemic. Our response to AIDS is helping to
strengthen the entire American health care system, and could
even have significant benefits for many developing nations.
Consider the issue of universal
health care. At the local, state and national levels, dozens
of groups are steadily working to provide more Americans with
access to affordable health care. The cost of health care
is such an enormous problem that it would garner a spot on
the American political landscape even if there had been no
AIDS epidemic. But what savvy AIDS activists have done is
add some very loud voices to the growing demands that the
U.S. healthcare system heal itself.
Chuck Bell of Consumer’s
Union, the non-profit publisher of Consumer Reports,
gives high marks to the AIDS activists who have added their
muscle to the push for health care reform. He calls attention
to developments in New York state, where a strong consumer
coalition has worked for changes that have earned the state
a reputation as a leader in health care reform.
“AIDS activists have
played an integral role in the coalition,” Bell says.
“They bring a wealth of knowledge and expertise from
their involvement in other policy issues. They have a sense
of what’s possible, and what types of pressure need to
be brought to bear.”
Similar dynamics are impacting
the issue of making medicine more affordable. A recent issue
of Time magazine contained a six-page series of stories about
growing consumer resistance to the high cost of pharmaceutical
drugs. A dramatic full-page photo showed a woman angrily waving
a bag of prescription drug bottles at a recent demonstration
at U.S. House Speaker Dennis Hastert’s Illinois office.
AIDS wasn’t mentioned once in the article, but anyone
familiar with AIDS activism is well aware of its place in
this battle.
A related issue is the inability
of developing nations to pay the high cost of drugs that are
only available from U.S. manufacturers because those manufacturers
hold the patents. AIDS activists pushed this issue to the
forefront several months ago by dogging Vice President Al
Gore on the campaign trail. Their specific charge was that
he was helping the U.S. bully AIDS-ravaged South Africa out
of producing or procuring its own more affordable versions
of AIDS drugs.
Two years ago, citing humanitarian
reasons, the South African government had passed legislation
that would provide an end-run around U.S. patents. But this
end-run was stalled by the U.S. government, which sided with
aggrieved American drug manufacturers—with Gore playing
a key role in a diplomatic show of force intended to persuade
South Africa to back down.
Enter the American AIDS activists,
whose highly visible protests of Gore’s position led
to coverage in the Washington Post, the New York Times, and
Newsweek. Last September, AIDS activists won a significant
victory when the U.S. and South Africa reached a compromise
that enabled South Africa to work on more specific legislation.
South Africa’s plan to
produce drugs is still in limbo as the complicated international
trade negotiations drag on. However, the efforts of the AIDS
activists have sent a clear message to the U.S. government:
it cannot put corporate profit above humanitarian need without
facing the possibility of being publicly called on the carpet
by its own citizenry. While the current struggle is specifically
about AIDS drugs, the implications are far-reaching. AIDS
activists are, in effect, calling for the United States to
be a more altruistic member of the world community—to
put saving lives ahead of making money. If this precedent
is clearly set in the AIDS arena, it might have a positive
impact on how world powers deal with developing countries
on a wide range of issues.
The grassroots response to
AIDS has also provided a model for Americans dealing with
other types of health problems. The most striking example
is breast cancer activism. In the last decade, breast cancer
activists have pushed for and won significant increases in
federal funding for research, as well as greatly increasing
awareness about the benefits of early detection. To say that
AIDS activism made this possible would be an overstatement,
as well as a discredit to other sources of inspiration for
the breast cancer movement, such as the women’s health
movement of the early 1970s. But it’s obvious that AIDS
activism has been an important factor.
Dr. Steven Miles of the University
of California-Los Angeles AIDS Institute, who has been treating
people with AIDS and HIV since his residency in the early
years of the epidemic, observes, “Initially there was
much more rancor in AIDS activism—people were doing things
like going into [pharmaceutical companies] and spilling pigs’
blood. The companies said, ‘Come be a part of the process.’
The AIDS activists won themselves a place at the table. After
that, other groups became more emboldened.”
Even the language that the
HIV/AIDS community uses may be providing a model for others.
Miles points out that the common convention of PWAs (People
With AIDS) to talk about how many years they have been “living
with AIDS,” in other words, casting the struggle in less
negative terms than they would if they talked about how long
they had been ill, has a significant parallel. It’s not
uncommon for women stricken with breast cancer to identify
themselves as “breast cancer survivors,” he observes,
and for those who regain good health to mark the number of
years that they have been free of cancer.
This phenomenon is part of
the larger issue of how people with certain health care needs
define themselves and their relationship to health care providers.
Again, people with AIDS and HIV are setting a great example.
HIV positive people’s efforts to educate themselves about
their options and to make their own decisions, instead of
blindly following doctors’ orders, have taken the concept
of “patient empowerment” to a whole new level, changing
how people with other kinds of needs relate to health care
providers. While this trend has been slow to spread, it is
definitely becoming more noticeable in other disease fields,
particularly cancer.
Furthermore, the American
psyche has long harbored a bugaboo that is finally being addressed
more directly in the face of the AIDS epidemic: sexuality.
There are still far too few discussions about how to have
physically and emotionally healthy sex, but AIDS has compelled
some people to try harder than they did before. “The
epidemic has brought sexuality out of the closet,” says
Mark Hannay of ACT UP (AIDS Coalition to Unlease Power) New
York. While contemporary candor about sexuality has its roots
in the sexual revolution of the 1960s, Hannay suggests that
the emergence of AIDS has led to new health-related developments
such as “a much franker discussion about substance abuse
and sexuality.”
U.C.L.A.’s Miles agrees
that AIDS has contributed to more open discussions about once-taboo
issues. He believes that there’s a connection between
the AIDS epidemic and a growing trend that he sees in the
cancer field. “People are beginning to discuss sexual
functioning post-mastectomy or post-prostectomy with their
doctors,” he says. “Physicians fully expect patients
to ask about this now.”
Developments in the AIDS community
have also had an impact on some more general health care issues,
such as preventive care. People with AIDS and HIV are helping
to call attention to the concept of maintaining wellness,
instead of only seeking health care when illness occurs. Ditto
the concept of holistic health care—addressing a person’s
medical needs in the context of that person’s emotional
makeup and socioeconomic status.
These are only some
of the possible beneficial outcomes of our experiences in
the AIDS epidemic. We won’t be able to fully comprehend
what we have accomplished until we have gained the perspective
that comes with time.
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