January 21, 2003: Advocates are working urgently in Congress and state legislatures to prevent decisions that could ultimately deny access to medical care to millions of low or middle income Americans with HIV or other illnesses. As this issue goes to press:
- 140 AIDS organizations have sent a consensus letter to each U.S. Senator, asking for $162 million in additional funding for ADAP and other Ryan White programs. The letter notes that many states already have waiting lists for people needing medication under this program -- and Texas may drop many patients already on antiretrovirals. The letter notes that the reason for the crisis is that more people are living longer due to HIV treatment, and also that new drugs are becoming available.
- On January 17, four U.S. Senators, including, one Republican, co-sponsored a dear-colleague letter on ADAP and Ryan White funding -- addressed to the Chairman and Ranking Member of the Senate Subcommittee on Labor, Health and Human Services, Education. It will be open for additional signatures by Senators for at least several more days.
- These letters list states that now have waiting lists for people who need treatment for HIV or AIDS -- and note that Texas is considering cutting off as many as 2,500 people currently receiving treatment through ADAP by June 1 (by retroactively changing eligibility rules so that some of the people already in the program will no longer qualify for ADAP in Texas).
- In Oregon, 12,000 people will lose Medicaid coverage, including almost 400 with HIV or AIDS. Advocates there are developing a weekly update to provide facts and reduce rumors and speculation.
- We are starting to hear of herbal and other "alternative" treatments being considered for those who can no longer afford standard medical care.
- States across the U.S. are facing their worst budget crisis in over half a century -- while the Federal government has also gone from large surpluses to large deficits, even before another war against Iraq.
What Zackie Achmat recently said about South Africa will increasingly apply to the United States: "The country is realizing that people can actually buy life, and that this is unacceptable" (quoted in The New York Times, January 13, 2002).
What You Can Do
Millions of Americans already agree about the importance of the AIDS epidemic, and of access to healthcare, but probably 99 percent of them have never
been heard by their political representatives, or in any public way. While specialists and organizations are already doing excellent work, we urgently need new advocacy campaigns designed to allow anyone to help, whenever and however they can. These campaigns need more accessible Web sites and action alerts. But even more importantly, they need political discussion and negotiation among AIDS and other organizations, to develop common actions signed onto by many of the most trusted organizations and individuals working in health.
Fortunately AIDS advocacy already has a long tradition of consensus letters, often signed by dozens of major organizations. But then the letter is delivered to some official, and perhaps a press release goes out, but that's it. Usually these campaigns have had no role for individuals or groups who want to help but cannot be heavily involved. We need similar consensus development for campaigns that the public can run with.
Such campaigns will enable hundreds of thousands of citizens to communicate at least occasionally with their federal, state, and local representatives. Congress and other officials will know that these people care about AIDS and health, greatly improving government commitment and political will. Millions of people already agree on the issues. They need better opportunities to act.
Meanwhile, here are some places to start:
- Check in with AIDS organizations in your area to see what they are doing, or how they suggest you get involved. This year many statewide advocacy programs will come together in response to the funding emergencies. Statewide campaigns can work with others on Federal issues as well.
- Get to know your political representatives' main interests, and the staff person(s) handling health. Sometimes it is better to work with the local office staff, as they are usually more accessible and less rushed than those in Washington. Let them know that you are interested in health, and AIDS. Maybe they can help you understand what is happening in Congress in these areas. You do not need to wait for an action alert, since you may want to start building a working relationship before you need to ask for a vote.
To find the names and contact information of your representative and your state's two senators, see www.congressmerge.com. This site also has background information -- including short, practical guidelines for communicating effectively with Congress. And you may want to be informed about your representatives' committee memberships and other major interests, even outside of the health area.
- To receive national alerts on AIDS treatment access issues (about one per month), join the Treatment Action Network of Project Inform, www.projectinform.org.
- For much more detail on current campaigns, join ATAC, the AIDS Treatment Activists Coalition, www.atac-usa.org -- especially the Save ADAP email list (currently about 10 e-mails per day).
We will closely follow advocacy and activism in 2003, and let you know as consensus-based, user-friendly campaigns are developed.
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.