Important note: Information in this article was accurate in September 2002. The state of the art may have changed since the publication date.
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(RITA!) HIV Treatment Alerts - September 2002
Rich Arenschieldt
Much of the information that you read in HIV Treatment ALERTS! is geared towards how to use drugs to manage HIV infection. The next few paragraphs will discuss something even more important: how to keep receiving those very drugs. There's a crisis looming with regards to drug access; your attention and action are needed.
Many who access the public health care system for their medical care receive HIV meds through the AIDS Drug Assistance Program or ADAP. This program is funded by the federal government as part of the Ryan White CARE Act. Its purpose is to make sure that folks without insurance or resources can still obtain meds they need to manage HIV disease.
This sounds simple, but, in fact, several things are happening that our friends in Washington, DC, didn't forecast:
This simultaneous trio of events translates into one issue: more and more people need HIV meds at a time when there are declining federal and state dollars being appropriated to pay for them.
Each of these ADAP programs is administered by state health departments. Sixteen states are currently implementing new restrictions to their ADAP clients. These include:
For those of us in the great state of Texas, state health officials are looking at all of these options and appear to be leaning toward the most exclusionary ones. The state legislature is also involved; they are not willing to provide any assistance to cover ADAP budgetary shortfalls. Furthermore, they have the legislative authority to abolish the program if it does not maintain a balanced budget. With a projected $7 million dollar shortfall this fiscal year, things don't look too promising.
While this all seems to be happening in some faraway bureaucratic place, it is just weeks away from landing right in your lap. Sometime in the near future you or someone you know could walk into your clinic pharmacy and receive the following notice:
"The eligibility requirements for the Texas State ADAP program have changed. As the result of these changes, your current reported level of income exceeds the percentage of the federal poverty level currently required to maintain participation in this program. As a result, you will be ineligible for ADAP-funded medications effective sixty (60) days from the date of this letter."
There it is folks—no breakfast, no goodbye kiss, not even a phone number. You've been sailing along with an undetectable viral load and stable T cell count, and then, Shazaaam! the medical throw-rug gets yanked out from under you.
What to do?
While you may know The CFA because of its HIV treatment information, we also have a long history of advocating for HIV-positive folks. The inside cover of this issue has the first part of our mission statement. The statement ends:
"(The CFA) . . . advocates for the entire affected population, ensuring that Houston's regional needs are factored into the national dialogue about HIV/AIDS."
As proof of this, last summer The CFA hosted a meeting of HIV advocates from around the country. In our humble opinion, we thought that the views of HIV-positive folks would be better expressed by a single national group, speaking with a unified, scientifically informed voice. As a result of our efforts, the AIDS Treatment Activists Coalition (ATAC) was born (see ATAC Needs You!). This is a group of motivated, focused, and informed individuals. Though many ATAC members have been involved in AIDS activism for years, one of their central concerns is training and mentoring new individuals to reinvigorate the field of HIV-related advocacy.
The ADAP crisis is one of ATAC's main policy concerns right now. Through discussion groups and educational "teach-ins" ATAC is able to transform interested individuals into powerful advocates representing HIV-positive people. Membership in ATAC is free and you can join the group by sending an e-mail message to: info@atac-usa.org.
While you read this article, government officials in the house and senate are debating whether or not to increase ADAP funding. As you can imagine, with the current attitude towards terrorism and shrinking budgets, HIV meds are not a high priority in the minds of our congressional representatives. Remember the cardinal rule: politicians change their views as the result of reading letters written by voters in their districts. To find your representative visit www.house.gov/house/MemberWWW.html on the Internet and enter your complete zip code and state. To contact your Texas senators:
Phil Gramm (R-TX)
370 Russell Senate Office Building
Washington DC 20510
202.224.2934
Kay Bailey Hutchison (R-TX)
284 Russell Senate Office Building
Washington DC 20510
202.224.5922
There is also a toll-free phone number for The Capitol switchboard 800.648.3516. They will be able to connect you to a representative. If you prefer, you also may contact The White House at 202.456.1111. Ask for President Bush; if he's not too busy . . . he may take your call.
For the last few years federal and state health officials have been saying, "Take your pills! Take your pills!" Are you now ready to let them say, "They're too expensive, you can't have them"?
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Copyright © 2002 - Research Initiative Treatment Action (RITA!). Reproduced with permission. RITA! is published by The Center for AIDS. Contact Thomas Gegeny, MS, ELS, Editor, RITA! for permission to reproduce RITA!. tom@centerforaids.org. http://www.centerforaids.org
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