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).
- 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.
- No matter how upset and frustrated you feel, do not drop out of care.
- 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.
- 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.
- 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.
- Find out if your community has an emergency medication fund.
- Check to see if you qualify for Medicaid.
- 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.
- 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.
- 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.
ISSN # 1052-4207
Copyright 2002 by John S. James. Permission granted for noncommercial reproduction, provided that our address and phone number are included if more than short quotations are used.