OutLive

by Rich Arenschieldt

ACTING UP

AIDS activist group again works to preserve medication funding

Fresh on the heels of its success in obtaining the largest statewide appropriation in the nation’s history to provide medication to HIV-positive individuals, AIDS Coalition of Texas NOW! (ACT Now!) is ready to stir it up again.

Formed in October 2003, this patient-led grassroots advocacy organization has leapt from infancy into adulthood and is now recognized as a national player and a force to be reckoned with when issues regarding HIV and AIDS are anywhere on the legislative table.

ACT Now! initially formed in response to a projected budget shortfall in the Texas AIDS Drug Assistance Program (ADAP). This program provides life-saving antiretroviral medications to medically indigent men, women, and children with HIV in Texas. As part of the massive budget-cutting process that took place during the recent legislative session, the Texas ADAP program was put on the chopping block in order to balance the state budget.

Realizing that any additional limitations in accessing ADAP would place HIV-positive Texans in serious medical jeopardy, Tracy Wilson (pictured), ACT NOW! state coordinator and a Houstonian, sprang into action. As the result of intense training from five regional coordinators around the state, 293 HIV-positive Texans descended on Austin giving every legislator a visit from a group of ACT Now! members.

“The most profound success that ACT Now! has experienced so far is that we have proven that you can give people a voice in the process,” Wilson says. “Our members are not lobbyists. They are just ordinary people who have extraordinary stories to tell. By letting them speak freely and giving them access to decision makers in the political process, we have been able to implement monumental change.”

Not resting on its previous accomplishments, ACT Now! knows that work remains to assure continued ADAP funding. In spite of the record amount of funding recently appropriated, a $10 million shortfall still exists (based on current actuarial projections) forecasted for the Texas ADAP program in 2005. There is a reason for this gap, according to Wilson. “While the current amounts appropriated for ADAP will serve those HIV-positive individuals already in the system, the Texas Department of Health expects to enroll a minimum of 100 new clients per month throughout the next biennium,” he says. “This projected deficit is the result of these new enrollees entering the program.”

In order to contain costs resulting from the projected shortfall, the state board of health is again proposing limiting access to ADAP by medically indigent HIV-positive Texans. These restrictions include implementation of medical eligibility criteria (so that the sickest people receive care first), restricting eligibility of those individuals who may have access to federal Ryan White Title I funding, requiring medication copays of $100 per month, raising income criteria (making only the poorest Texans eligible), or halting enrollment in ADAP in Texas entirely.

“These five options that regulators want to impose need to be examined very carefully,” Wilson says. “ACT Now! believes that these rules need to be considered taking into account results from over 300 surveys from our membership regarding the restrictions. Additionally, over 900 public comments have been received by the Texas Department of Health regarding this appropriations process. These rule changes need to be as consumer-friendly as possible, taking into account the needs of present or future consumers of the program.”

ACT Now! plans additional legislative lobbying (including an August 7 bus trip to Austin) as well as advocacy training for new members during the summer and fall. Individuals interested in ACT Now! may contact Wilson at 713/221-3242 or aidscoalitiontx@aol.com.

Rich Arenschieldt wrote about the prospects for AIDS funding [“Health Viewpoint”] in our December 2002 issue. He is director of education and outreach at the Center for AIDS.

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