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December 28, 2004

UPDATE ON THE POLITICAL SCANDAL AT AIDS ACTION--Plus, the AIDS organizational crisis and diversification

There are serious new developments that underscore the AIDS community's organizational crisis. At AIDS Action, the "national voice" for AIDS service organizations and the largest AIDS lobby in Washington, the condoheads and AIDScrats who run it are quaking in their boots as they await the release of a soon-to-be-published report from the Ford Foundation.

The Ford Foundation commissioned a study evaluating the effectiveness and advocacy of the national AIDS organizations; it was written by Derek Hodel. And, we hear, the report is absolutely devastating in its comments on AIDS Action's lack of effectiveness or consistency as an advocate for the community it claims to serve. During the years I wrote a column on the politics of AIDS for POZ magazine, I was constantly hearing from gay staffers on Capitol Hill, who were fighting to get federal help for those with HIV and AIDS , on how AIDS Action was AWOL from any legislative or bureaucratic fight that wasn't related to the Ryan White Act, from which most of the 3000-plus local AIDS service organizations (ASOs) which are members of AIDS Action and sent it money get their funding.

To take just one example, AIDS Action was completely absent from the successful struggle that got Congress to legislate compensation for hemophiliacs who were infected with HIV by government neglect in the supervision of the nation's blood supply. This year, AIDS Action boycotted the scrupulously non-partisan AIDSVote project--designed to register the HIV positive and make sure they could vote by absentee ballot, as well as soliciting and publicizing the candidates' positions on AIDS issues--even though AIDSVote was endorsed by virtually every major AIDS-fighting organization. And the list goes on....

In May last year, the Washington Blade's Lou Chibarro reported on a study commissioned by AIDS Action's own board of directors, which found that "AIDS Action's presence and visibility in Washington within the AIDS community is either nonexistent or minimal, and its previous leadership role as the voice of that community has vanished." When the press got wind of this report, AIDS Action's bureaucrats tried to disown and suppress it. The new Ford Foundation report will echo the findings of AIDS Action's own report last year.

Today, The Advocate's daily news service has just posted a lengthy account, based on DIRELAND's December 24 report, of the political scandal at AIDS Action--whose executive director has joined in organizing an Inaugural "Salute" banquet to Bush and the Republicans, with the proceeds going to a Big Pharma front group that fights against getting cheap generic AIDS meds to the world's poorest victims of the epidemic.

AA's executive director, Marsha Martin, is now trying to squirm away from her shocking actions, telling people that she "never saw" the invitation's wording before it went out. Well, Marsha, it's hard to believe an old political bureaucrat like you didn't know exactly what you were doing when you joined a host committee made up entirely of Republicans and people on various GOP payrolls. Are you now also going to claim you didn't know what the banquet's sponsoring group with the deceptively anodyne name, the AIDS Responsibility Project (ARP), was really all about? It's a matter of record that the ARP is run by a Republican political hack and funded by Big Pharma to crusade for the maintenance of the drug multinationals' monopoly on AIDS-fighting meds and the suppression of any attempt by the U.S. government, by telling lies about the effectiveness of cheap generic AIDS drugs and crusading against their adoption or use. If you, Marsha, didn't know about ARP's deplorable and mendacious campaigning against the interests of the world's poorest victims of the pandemic, then you're too bloody ignorant to pretend to leadership of the AIDS community. And if you did know, your betrayal of People With AIDS all over the planet is--the word is mild--reprehensible. Either way, your actions in this matter are stomach-turning...and you should be fired.

I understand that AIDS Action is already beginning to hear vigorous protests against Marsha Martin's unacceptable sellout not only from People With Aids, but from some of its funders, and even from some of its own past and present board members. If, after reading my earlier report, you wish to join in the protests, you should e-mail AIDS Action board chairman Craig Thompson (executive director of the AIDS Project Los Angeles) at [email protected].

Even though I broke this story on Christmas Eve Day amid the holiday's distractions, I'm already getting feedback from AIDS activists who plan on demanding their local AIDS service organizations disaffiliate from AIDS Action and stop sending money to this useless and collaborationist bureaucracy. After the Ford Foundation's report and its findings on AIDS Actions are published, those calls for disaffiliation will no doubt increase.

BUT, BEYOND AIDS ACTION, the AIDs community faces a deeper organizational crisis. The Washington Post reported yesterday that, "Across the country, more and more AIDS organizations that have provided food, housing, legal aid, medical treatment and other help to those infected with HIV/AIDS are diversifying.

"But the expansion has drawn concerns from those who note that 40,000 new HIV infections occur annually in the United States and that 18,000 people a year die of AIDS. They say that those afflicted by HIV/AIDS will be shunted aside in the rush to diversify [and take up other diseases' victims]....

"Kandy Ferree, president of the National AIDS Fund, which helps finance about 400 community AIDS groups, said she is concerned that some AIDS groups may expand into fields where they aren't as qualified just to get more funding. " ' It is absolutely critical that organizations . . . not chase dollars for the sake of chasing dollars,' Ferree said. 'It's very dangerous.' " You should read the entire WashPost story.

The problems of diversification by AIDS orgs in their money chase are also problems of accountability, stemming in part from the fact that too many AIDS groups are run by people who are not HIV-positive (like AIDS Action's Martin) or in which People With AIDS (PWAs) are under-represented on their governing councils.

I e-mailed the WashPost story to a number of prominent AIDS activists with long organizational experience in fighting the epidemic, and asked for their comments. Among the most thoughtful responses was this one, from someone who has done more in fighting the pandemic than most:

"The expansion of services is typically--but not always--a result of the agency altering its mission in order to chase funding.  These are decisions made, or largely influenced, by the bureaucrats and administrators of these agencies, who are more concerned with self-preservation and institution-building than advocacy on behalf of or service to people with AIDS.

"That may or may not mean they have insufficiently served their original mission, as that varies from organization to organization.  It is admirable and, quite frankly, typical, that organizations and efforts built on the blood of people with AIDS have served as examples and inspiration and as platforms for expansion of services to others in need.

"But the real danger here is the extent to which control of community-based and community-built ASOs has been taken away from people who themselves have the disease.  If these are organizations with a powerful and controlling presence of people with AIDS on their boards, I would be less skeptical than if they had boards that have followed an all-too-familiar path towards token representation of PWAs on their boards. 
"These non-profits are a powerful community asset, yet we have, for a variety of reasons, allowed many of them to drift out of the community's control into the hands of careerists and empire builders.  That isn't necessarily bad in every circumstance, but as an overall trend, I find it disturbing.
"What has distinguished the AIDS activist movement has been the principle that people with the disease need to take charge of their own destinies and be a powerful voice in all decision-making that affects their lives.  That has been forgotten in many quarters.
"And, sadly, a bureaucrat or non-profit administrator with HIV seems to too often respond better to the self-interest and institutionalization of his or her bureaucracy than to the interests of others with HIV.  When I look at PWA empowerment on boards of directors, I partially discount the PWA board members who work for AIDS bureaucracies.  Their 'inside' view doesn't have quite the 20/20 focus of those on the outside with AIDS who are struggling to get healthcare, stay sober, find housing and to survive. 

"AIDS was once a singular problem for urban gay white men; they basically had no other comparable burden or challenge in their life.  But the disease today is inextricable from a raft of other problems of the poor, particularly the urban poor.  Addiction, mental illness, homelessness, racism, poverty, etc.  So to the extent that these services are expanded to others in that spectrum, it is great and also potentially useful to building a sufficiently secure safety net to help people prevent infection. 
"Housing Works is a good example.  I don't know that they 'require' their clients to have HIV before they can help them and, quite frankly, I don't care, because the most pressing front in the battle against AIDS in NYC is also a battle against homelessness and being underhoused.  But the Housing Works governance model guarantees PWA representation--real representation and power--in a manner matched by few agencies.  So I have confidence that whatever they are doing is truly being done in the name of providing service to those in need, particularly people with AIDS, rather than as a fundraising ploy or even a controlling mechanism to diminish the voice of those pesky activist PWAs."  Well said......
RELATED READING:  A disturbing story on Sunday from the Associated Press (picked up by 365gay.com):
"Federal Workers May Be Fired For Blowing Whistle On Dangerous AIDS Drugs". Read it and weep....

Posted by Direland at 07:29 AM | Permalink

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