Think you’ve hit the end of the road? Here’s a step-by-step survival guide:
1. TAKE A DEEP BREATH You’re not going anywhere soon. Some HIVers with few or no T cells have lived for years without illness just by taking
anti-infection meds like Bactrim. Go to www.aidsmeds.com, click “Lessons,” then “Opportunistic Infections (OIs)” for a complete rundown.
2. DEMAND TOP CARE Doc says you’re out of luck? Don’t stand for it. Call your local AIDS group, the American Academy of HIV Medicine (866.241.9601) and the National Institutes of Health (800.HIV.0440) and tell them you need cutting-edge care. Often, it’s at a university or research hospital.
3. GET IN THE LOOP Go to www.aidsinfo.nih.gov/clinical_trials/, click “Treatment Experienced/Failure” and search for trials or expanded-access programs that may be right for you (do your best with the medical jargon). If there’s a trial site near you, dial the number. It just might save your life.
4. FIGHT FOR YOUR LIFE The veteran fighters of AIDS Treatment Activists Coalition, many of them HIV positive, need fresh faces and voices to help push Uncle Sam and Big Pharma for new therapies (and, hello, a cure). Learn what they’re about and find out how to join up at www.atac-usa.org.
5. DON’T DO IT ALONE Seek the support of a shrink, HIVer group, whatever you can find. Most of all? “Never take no for an answer,” urges Sharon Wagner. Poet Tory Dent puts it plainly: “Just hang in there.”