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For more than 1,000 days HIV
prevention and care initiatives have been held hostage by
the federal government. This national crisis has caused great
distress to those of us on the front lines of the AIDS movement.
Highly successful HIV prevention strategies targeting individuals
and communities most severely impacted by HIV have been under
constant scrutiny from the government. While thousands of
individuals become infected with HIV and nameless others living
with HIV and AIDS struggle to access a bankrupt healthcare
system, the government continues to mischaracterize scientific
facts to bolster political agendas in areas ranging from abstinence
education and condom use to missile defense.
I for one am fed up watching
advances in science and healthcare initiatives spiked with
politics to justify conservative policies. I am sick and tired
of seeing appointments to key scientific advisory committees
given to people with political, rather than scientific credentials.
AIDS is a complex disease that requires a sophisticated response.
There are still far too many men, women and children who do
not have access to comprehensive health care and lack adequate
insurance coverage, too many are living with untreated mental
health illnesses, too many are homeless and hungry, and far
too many of them are still living in fear and isolation as
the stigma attached to HIV disease continues to permeate families
and communities nationwide. Diverting AIDS dollars to promote
an ideological agenda and ineffective programs is a waste
of scarce resources, and more importantly, a waste of lives.
But what is even more troublesome
is the economy within the AIDS movement. Too many of us have
become too comfortable with our “AIDS jobs”, our
“AIDS stipends”, and our “AIDS subsidies”.
Once upon a time working for a community-based organization
was about local volunteerism; about giving back to the community
that had supported you in one way or another at one time.
If you got paid to do this work it was a nice bonus. Yes,
as we grow older our perspectives on life also changes, however,
working at a community-based, non-profit organization is still
about giving back, and sometimes giving back means sacrifice
and doing without. While the non-profit arena brings a “relaxed”
work environment, it’s not glamorous. The hours are demanding,
the job expectations are often unrealistic, and for the most
part the pay sucks. I’ve seen many friends struggle with
the decision of moving from the non-profit to private workforce
during the last couple of years. But it’s a decision
we all have to eventually face.
This problem also extends
into the community of individuals who survive and thrive because
of “AIDS stipends”. Far too many of us have become
accustomed to, too dependent upon the benefits… the vouchers,
the subsidies, the pantries, the AIDS Drug Assistance Programs,
Medicaid and Medicare. We expect these benefits to continue
rolling in month after month, indefinitely. And if there’s
a problem with delivery, we expect someone else to handle
it.
Well, for those who haven’t
been paying close attention, the economy sucks big time and
the government is cutting back on the Ryan White CARE Act
and all the programs that have “supported” us over
the last decade. Reports indicate that 43.6 million U.S. citizens
were uninsured in 2001. That figure is up 2.4 million from
the year 2000. Today more than 35% of Americans live without
insurance. This condition has been brought on by higher unemployment
rates and health care costs that continue to skyrocket. Small
not-for-profit and for-profit businesses are making difficult
choices of passing on escalating insurance premiums to employees
or canceling coverage all together. As a result many individuals
are making difficult decisions to live with an untreated illness,
like HIV, or racking up bills they will never be able to pay.
While many of us have been
asleep at the wheel, during the last three years, nearly three
million domestic jobs have been lost and the number of men,
women and children living below the poverty level continues
to climb. Georgia, which already has a struggling ADAP, is
looking at a 10% cut in HIV/AIDS funding for fiscal year 2004
and 2005. South Florida has seen its waiting lists expand
as the number of HIV/AIDS patients seeking assistance grows
faster than the federal Ryan White grants. An increase in
domestic AIDS spending proposed in an amendment introduced
by Senator Charles Schumer (D-NY) failed in Congress in September.
With an increasing number of HIV positive individuals unable
to afford the skyrocketing costs of antiretroviral therapy
and management medicines, the planned domestic spending for
HIV/AIDS care in 2004 displays a disturbing lack of concern
for individuals living with HIV and AIDS in the U.S.
Far too many of us spend
too much time making obscene references to being the “core”
group of this organization or that movement; or pointing fingers
and accusing “others” of taking their slice of the
pie. Well, it doesn’t matter if you’re a gay man,
a single mother of four, or a clean and sober ex-offender—it’s
five minutes to midnight, Cinderella. And it ain’t gonna
be pretty at half past the hour. If you thought the last three
years were tough, you ain’t seen nothing yet.
The bottom line is that with
cuts and flat funding for Ryan White CARE Act programs, an
increasing number of uninsured, underinsured and poor individuals
living with HIV will have reduced access to care and treatment.
Somewhere out there I know
that there’s a silent majority in this struggle against
AIDS; a majority that feels the pinch of the economy, that
questions the government’s AIDS policy and wants to change
the status quo. Unless more of us are willing to speak up
and take action, in 2004 and beyond, community-based organizations
will be expected to provide the same services with less funding
and individuals living with AIDS and families impacted by
HIV will be forced to make ends meet with less assistance.
Now is the time, more than
ever, that the voices of men and women living with and impacted
by HIV and AIDS must be heard on a local, state and national
level. You can no longer afford to sit on the sidelines and
expect someone else to do it for you or to give it to you.
It’s time to put an end to the “gimme syndrome”
and the “pity party.”
What can you do? What should
you do? Get involved. Organize. Strategize. Mobilize. Vocalize.
Vote.
I challenge each of you to
become involved in the AIDS movement—to further the ability
of people living with HIV to have access to the services needed
to live healthy and productive lives and maintain the personal
rights and liberties that many of us take for granted. In
the words of Margaret Mead, “never doubt that a small
group of thoughtful committed citizens can change the world…
indeed it’s the only thing that ever has.”
Be Strong. Stay Safe.
Charles E. Clifton
Executive Director / Editor
Send comments and reactions
to ed@tpan.com
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