The Obama Administration's process for developing a National AIDS Plan was so inclusive and interesting -- with its 14 community forums around the nation plus various meetings with the most affected groups -- that one began to actually expect a National AIDS Plan that was inclusive and interesting. The 60-page document the Administration released yesterday can be succinctly described as disappointing. More sadly, it is simply baffling.
Despite all the community meetings, there is no vision of how to go back and rebuild the crucial community involvement in fighting AIDS which was purposefully destroyed by federal and local governments in the past five years. There is no compelling vision of the future -- for example, how we are going to integrate our now more than one million citizens with HIV/AIDS back into real lives, with employment and an existence beyond social services. Are we just going to go on this way, depressing year after year, with those with the education and background to return to a productive and satisfying "real life" being able to do so with the advantage of better treatment while the majority -- no matter how well or badly they are doing physically -- are left to live out the rest of their lives in a bizarre nether world of "medical case management" and "social services?"
Equally, there is no vision for drastically reforming drug and treatment development. Right now, the "academic centers", meaning major research hospitals, which receive millions from the National Institutes of Health to undertake patient trials of promising treatments are allowed to go on and on year after year, receiving their millions without enrolling enough people with HIV/AIDS in trials to actually finish testing various new drugs. This stark enrollment failure also reflects the contempt for community now so evident throughout our whole AIDS effort. Most elite research centers simply will not make real contacts or partnerships with community organizations in the low-income neighborhoods where most people with HIV/AIDS now reside, thereby eliminating even the possibility that most of the current population with HIV/AIDS will even learn about promising treatments, much less enroll in a trial.
Our new plan also makes no mention of American AIDS orphans and children living precariously in families where the parent---usually a single mother---has AIDS. The United States has the most AIDS orphans in the Western world; we don't know how many because, to this day, no one, whether the Centers for Disease Control, or local health departments, bothers to count them. Yes, the nation that gives the most help to AIDS orphans elsewhere---which certainly is admirable---has not one national program or funding stream to provide help and attention to its own AIDS orphans! A plan which mentions them not at all obviously will not change that.
It is not that the National AIDS Plan is wrong in what it does say. It is all for "intensifying HIV prevention efforts in communities where HIV is most concentrated," "increasing access to care and improving health outcomes for people living with HIV," and "a more coordinated national response to the HIV epidemic." Who could disagree?
But the important issues left out -- almost bizarrely unmentioned -- are what make this plan so incomprehensible.
For example, the term "peer educator" is not used once in the entire 60 pages. Peer educators, for those not familiar with them, are local people, representative of the populations they are educating -- in this instance, people with HIV/AIDS who have been intensively trained to be prevention educators and to teach good self-care to others. For most of the American epidemic, they formed an extraordinary public health army across the United States, the frontlines that enabled us to get AIDS under some control even though it was widespread by the time real attention was paid. But, in 2007, the federal government decided that "professionals" should take over virtually all AIDS-associated jobs, and it substantially destroyed funding for peer educators, particularly those doing the outreach that got HIV-positive people into treatment and who provided the local support groups and education that helped them understand and stick to their treatment.
The results were disastrous -- and lethal -- as we see only too well in New York City. Under the Bloomberg Administration, New York actually started defunding and destroying its own community-based AIDS care and support service programs, with their concentration of peer educators, in 2005, two years before changes in federal funding largely destroyed them across the country. Immediately on losing these very localized services---which were switched to large medical centers and social service agencies mainly in Manhattan--- the Bronx and Brooklyn, the city's two poorest boroughs, which had reached a point many would have said was not possible (they were doing equally well as Manhattan in bringing down deaths) -- fell behind again. Every year since, fewer blacks and women received AIDS care and support services and every year the portion of women in New York City HIV/AIDS deaths has increased.
The community forums were impressive. Yet, almost nothing these AIDS-stricken communities had to say about the critical importance of being helped and funded to fight AIDS, themselves, became part of this document.