Strub's Smart Suggestions
(People with AIDS at a gay health conference in the early 1980s.)
When the National Association of People With AIDS was first getting established as a nonprofit advocacy group, they hired Stephen Beck as their executive director. Stephen was quite sexy in a stocky wrestler way and he had the right kind of smarts to navigate the needs of PWAs, service organizations and federal agencies to keep the group viable and supported by PWAs.
He once told me that he had to have honest and substantive answers to my questions when I would call him on the telephone, and that I kept sharp and ready to deal with pesky bureaucrats and funders. Stephen never avoided responding to my concerns.
Unfortunately, the same cannot be said of NAPWA's current leadership. After eight days of not receiving a response to questions emailed to NAPWA's board chairman Tyler TerMeer, I got him on the phone at the Ohio AIDS Coalition where he works. It was painfully obvious Tyler was unprepared to speak with me and provide substantive answers.
He mentioned that the NAWPA board had decided months ago that when questions arose about their many problems from the press or community, that the board as a whole would reply. Oh. Well, why didn't NAPWA get around to telling the PWA community about this policy in writing on their site?
Tyler didn't say, but he said the board is meeting this weekend to address problems and respond to my questions. Nothing more screams "crisis" at a nonprofit than being told the board is meeting over the weekend a few short days before the Christmas holiday.
My original questions last week dealt with any pending investigations by law enforcement agencies or the Centers for Disease Control and Prevention, why NAPWA does more to get negatives tested for HIV than delivering programs for positives, where is the grassroots membership or support, and could NAPWA become less beholden to Gilead and OraQuick and more active for PWAs.
Here's the response, in full:
As a cost cutting measure in November, NAPWA eliminated the positions of Executive Vice President, Vice President for Development and Vice President for Communications. Any questions regarding any investigation by a law enforcement agency should be directed to the appropriate law enforcement agency. As a matter of policy, NAPWA does not comment on individual personnel matters, and it declines to comment.
If only NAPWA's current leadership would honor and learn from the Stephen Becks who founded the organization, they would not insult me and other PWAs with such a vague reply. Coming on top of months of NAPWA remaining secretive and frightened about its latest crises, the reply signals it may not be possible to rescue and revive the organization.
To get a more moderate perspective on the situation, I turned to my friend Sean Strub who's been living with AIDS for decades, founded POZ magazine and now battles criminalization of PWAs, for his opinion. Sean said:
The situation at NAPWA is unfortunate, sad and unnecessary. People with HIV in the U.S. have suffered for not having a strong, cohesive voice putting their interests first; perhaps the crisis at NAPWA will be a step towards allowing such a voice to emerge.
I don't understand why their board of directors has been so closed and secretive. That does not serve the public interest, the effort to fight HIV or people with HIV. Crises are when non-profit agencies should make an extra effort to be transparent and accountable, especially if they expect to rely upon the goodwill and support of the people they purport to serve.
I've suggested privately to a number of board members that they create a process to work with a blue ribbon commission of people with HIV who are not directly a part of their mess to get outside, objective guidance from community stewards who can help guide them out of the financial hole and crisis of leadership, accountability and transparency in which they find themselves.
The people with AIDS commission idea is something I can embrace, and I'm glad Sean proposes potential solutions. If that commission gets formed, much good can come of it simply by bringing diverse PWAs together and letting us decide our agenda for 2013, especially regarding federal programs.
Proving just how far removed NAPWA is from the affordable housing, uninterrupted access to healthcare and drug cocktails, and debilitating stigma faced by lots of PWAs every day in America, their newsletter published three days ago discloses no details about their troubles or how they're helping PWAs.
However, the lengthy lead story is all about the Prop 8 case and the Supreme Court agreeing to review Defense of Marriage Act legal challenges. Absolutely nothing remotely directly affecting the current daily concerns of people with AIDS.