ADAP Grass-Roots Advocacy

Ryan Clary

2003 was the year when we saw the consequences of the lack of access to the standard
of care for  people with HIV/AIDS in the United States. Several people in West Virginia and
Kentucky died while on AIDS Drug Assistance Program (ADAP) waiting lists. These deaths
signaled the failure of our state and national safety nets to protect the medically indigent with
HIV and may also be the harbinger of potentially hundreds of more deaths in 2004 as the ADAP
fiscal crisis continues to spiral out of control. Hundreds of people with HIV disease across our
country found themselves with limited access to treatment or on waiting lists for lifesaving and
life-extending drugs as drug cuts and program changes to many state Medicaid programs forced
them out of the programs and increased the burden on ADAP. Many are predicting that by the
end of 2004 we may have several thousand additional men and women relying on ADAP to save
their lives.

Grass-roots activists and representatives from AIDS service organizations are beginning to work
through existing and new coalitions to demand that elected officials provide adequate ADAP funding.
Treatment activists, who ordinarily advocate for new and improved therapies, are joining policy
advocates in the fight for a fiscally stable ADAP. Those who are experiencing the effects of the
ADAP crisis at the state and local levels have taken the lead in designing new grassroots
campaigns and are organizing their communities to write, call, and meet with their government
representatives to explain how the ADAP crisis is affecting them and those they care about.

Slowly, we are starting to see the results of these efforts. More members of Congress are aware
of the ADAP crisis and have noted that they are hearing from their constituents. The number of
representatives and senators willing to sign letters to their colleagues in support of increased
funding for ADAP is growing. Advocates in New York encouraged Sen. Charles Schumer (D-NY)
to be a champion for ADAP, and he has authored two amendments calling for adequate ADAP
and other Ryan White CARE Act funding.

The ADAP crisis increases exponentially each day as (to borrow Randy Shilts’ powerful metaphor)
the band of Congressional indifference plays on. While the number of individuals and organizations
involved in ADAP advocacy is growing, we cannot expect Congress to respond to only a few hundred
phone calls, meeting requests, and organizational pleas to acknowledge the value of the lives of
the medically indigent with HIV/AIDS by approving funds for their care.

Many of our representatives haven’t made ADAP funding a priority simply because their constituents
haven’t made ADAP funding a priority. Our Congress cannot represent our needs if we don’t take
responsibility for communicating with them what these needs are.

Every member of the HIV/AIDS community must get involved in this fight. This starts with every AIDS
service organization (ASO) making a commitment to do its part. This may be a challenge for many
organizations, given the pressure they are already facing with budget cutbacks and increased demand
for services.

However, when there are people around the country without access to lifesaving treatment and quality
healthcare, this is not an ordinary appeal. The large and successful network of service organizations
that we have built over the years can and must play a major role in this growing grassroots ADAP
advocacy movement.

The AIDS Treatment Activists’ Coalition’s SAVE ADAP Committee is an ad-hoc coalition of individuals
and organizations that advocates for adequate ADAP funding from Congress and state legislatures.
ASOs are encouraged to join SAVE ADAP by designating a staffperson, volunteer, or board member
as a representative.

The only requirement for membership is a willingness to be part of the solution. The best participants are
often the ones willing to be vocal and who can organize clients and community members. ASOs can also
help identify people not associated with agencies to get involved. People who depend on ADAP or are on
waiting lists make the best advocates since they can address the issues from a personal perspective.