On an ADAP Waiting List? Advice from Treatment Activists

AIDS TREATMENT NEWS #381, June 28, 2002
Kate Krauss

AIDS treatment activists submitted these suggestions during the writing of the story on the current ADAP funding crisis ("Thousands Face Loss of Treatment in ADAP Money Crisis," AIDS TREATMENT NEWS June 2002).

1. SIGN UP FOR THE ADAP WAITING LIST, don't just walk away. Make sure that you keep in touch with your case manager so that he or she can find you when it's your turn.

2. No matter how upset and frustrated you feel, DO NOT DROP OUT OF CARE.

3. Remember that people who are newly diagnosed with HIV are usually not supposed to start antiretroviral therapy until they have fewer than 350 CD4 cells -- YOU MAY NOT NEED TO START YOUR TREATMENT REGIMEN YET.

4. Push your physician or case manager to enroll you in PATIENT ASSISTANCE PROGRAMS. These are drug company programs that provide medications for low-income people who cannot obtain drugs through another source. A savvy doctor's office manager or case manager should fill out the paperwork. If you need advice on this, call Project Inform's treatment hotline: 800-822-7422 (toll-free in the United States) or 415-558-9051 (in the San Francisco Bay Area or internationally). Hotline hours are Monday-Friday, 9am-5pm and Saturday, 10am-4pm (Pacific Time). For a directory of patient assistance programs, see http://phrma.org/searchcures/dpdpap/ or call (800) 762-4636 for a copy. The directory is organized by drug company name.

5. Some clinics keep STASHES OF AIDS MEDICATIONS for people like you; some people with AIDS may operate a community "medicine chest" of free, unused medications. Ask around in support groups. Visit AIDS clinics and explain your situation -- discreetly. Get out the word that you are stuck and you need help. Remember, though, that interrupting antiviral therapy may be worse than waiting to begin.

6. Find out if your community has an EMERGENCY MEDICATION FUND.

7. Check to SEE IF YOU QUALIFY FOR MEDICAID.

8. DOCUMENT YOUR SITUATION and distribute the information to AIDS law organizations and other advocates. It will give them ammunition to fight for funding. Offer to tell your story to legislators or other officials.

9. JOIN AN ADVOCACY GROUP (see the list in the associated article). Learn how to lobby and write letters to the editor. Then do it. There is power in numbers.

10. PLAN CAREFULLY BEFORE YOU MOVE TO ANOTHER STATE -- ADAP formularies vary widely from state to state, and some don't even cover antiviral drugs. Some states require a six-month wait before you can access benefits. Some ADAPS may have a waiting list. Call local AIDS organizations and people with AIDS to get current information -- before you move.

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