Demise Of National Association Of People With AIDS (NAPWA) Leaves Uncertain Future

English: A section of the Berlin Wall with Gra...

English: A section of the Berlin Wall with Graffiti regarding Act Up. (Photo credit: Wikipedia)

Some sad (and possibly troubling) news for those of us living with HIV: NAPWA, the lobbying and rights organization for HIV+ persons in the U.S. has closed and filed for bankruptcy. John Manuel Andriote has the story- be sure to read the last paragraph.

 

From Huffington Post:

Although it wasn’t a total surprise when the National Association of People With AIDS (NAPWA) announced on Feb. 14 that it was suspending operations and filing for bankruptcy, it felt like a shock. Exactly 30 years after its founding by the very first people to go public about having HIV, all of them gay men, NAPWA’s financial immune system finally collapsed under the weight of allegations of misused funds and the demands of creditors, employees and a landlord who wanted to be paid.

NAPWA was never exactly flush with cash, and it restructured itself several times over the decades. But a Dec. 5 open letter to the community from its board made it clear that the end was all but inevitable. Longtime HIV activist and POZ magazine founder Sean Strub blamed NAPWA’s business model and leadership that was “inexperienced or inadequate, and, in some cases, compromised or lacking integrity.” He added that “accountability and transparency were concepts largely absent from their operations in recent years. The problem was so deep-rooted that even the most dedicated and sincerely committed people on their board or staff could not fix it.”

Time (and an apparent investigation by the Montgomery County State’s Attorney’s Office) will shed light on what exactly led to this sad state of affairs. Meanwhile, a history lesson is in order to understand what NAPWA was and why its demise is a sad (and worrying) occasion for tens of millions of people.

On May 2, 1983, a small group of gay men with AIDS carried a banner during the first AIDS Candlelight March in San Francisco. “Fighting For Our Lives,” it said. A month later, several men took the banner to Denver for the Second National AIDS Forum, held in conjunction with the then-annual gay and lesbian health conference. A dozen people with AIDS met together at the forum to discuss how they might organize themselves. They agreed that the slogan on the banner would be their slogan, because it captured what it was that they were doing: fighting for their lives.

The group proposed that local groups of people with AIDS from around the country join together to form a national group. They adopted a manifesto called the “Denver Principles,” a series of rights and recommendations for health care providers, AIDS service organizations and people with AIDS themselves. The Denver Principles became the charter of the self-empowerment movement for people with AIDS. Its preamble said, “We condemn attempts to label us as ‘victims,’ a term which implies defeat, and we are only occasionally ‘patients,’ a term which implies passivity, helplessness, and dependence upon the care of others. We are ‘People With AIDS.'”

After the Denver meeting, Bobbi Campbell, Michael Callen from New York and other gay men with AIDS and their supporters formed the National Association of People With AIDS. For three decades the Denver Principles were NAPWA’s foundational document. “NAPWA was the last keeper of the flame for the Denver Principles,” said veteran ACT UP New York activist Peter Staley, “and it’s sad to think there are few if any institutions willing to defend them going forward.”

But even without the organization built around them, the principles endure because they are now woven into the world’s responses to HIV/AIDS. At the United Nations’ 2006 High Level Meeting on AIDS, 192 nations unanimously adopted the Political Declaration on HIV/AIDS, including the so-called GIPA (Greater Involvement of People With AIDS) Principle. GIPA essentially made universal the principles of self-empowerment and involvement first articulated by that group of brave gay men who met in Denver in 1983.

Still, NAPWA’s demise leaves a void that no other organization has yet shown the capacity to fill. Terje Anderson, who was a NAPWA board member before joining its staff as policy director in 1998 and then serving as executive director from 2000 until 2006, said in an interview that one of the group’s most important legacies is the new community leaders NAPWA trained. “Something NAPWA wasn’t credited for,” he said, “was figuring out ways to identify, train and support leaders, not just white gay men from New York but people of color, women and people in rural areas.”

The group made other major contributions too. NAPWA was one of the first HIV/AIDS groups to advocate for HIV testing as a tool of personal empowerment. Anderson pointed out that the group was instrumental in helping pass the Ticket to Work and Work Incentive Improvement Act of 1999, which allowed people receiving Social Security disability benefits to return to the workforce without losing their Medicaid or Medicare health insurance. This was hugely important as improved medical treatment beginning in 1996 allowed HIV-positive people to live with the virus rather than await an inevitable death from AIDS.

“One of the things I’m proudest of,” said Anderson, “is that when I was there, we were the first domestic group that started to say we need to talk about the global epidemic. Other groups said, ‘Oh, no, that will take away from our funding. We said, ‘No, you have to worry about our African, Caribbean and Latin American brothers and sisters.'”

Tom Kujawski, who was NAPWA’s vice president of development from 2004 to 2010, said the organization “became vulnerable due to lax internal financial systems and controls further complicated by changing senior management.” He said there were contributing factors that hastened NAPWA’s end, including decreased philanthropic and corporate support due to the faltering economy and competition for that support, “fractionalization of the HIV/AIDS movement” and over-reliance upon federal grants.

Kujawski said he hopes NAPWA will endure through the Chapter 11 process “and emerge as a truly new entity.”

Sean Strub said, “I’m sad to see them go but hopeful that this will provide an opportunity for a more effective, representative and accountable national voice for people with HIV to emerge.” Although there are other national organizations run by people with HIV, including his own Sero Project, Strub said a group like NAPWA “is needed more than ever before.” He said a strong national voice is needed “to deal with rising stigma and criminalization, declining interest in and commitment to empowerment principles as embodied in the Denver Principles.” He added, “We have to do it amidst a massive HIV industry where it is sometimes difficult to sort out the real agenda driving individuals, institutions and initiatives.” If these aren’t reasons enough, Strub said, “Most of all, we need to focus on how we bring attention and effective resources to the epidemic that continues to grow amongst young gay men and especially amongst young African-American men who have sex with men.”

One big reason that NAPWA’s loss is shocking is that now gay and bisexual men, who account for two thirds of new HIV infections and most of those living with HIV in the U.S., will have no strong HIV advocates in Washington. The national LGBT organizations for years haven’t advocated forcefully for proportionate HIV prevention funding, or for anything else significant to the health and well-being of American gay and bisexual men with or at risk for HIV/AIDS. Instead, they have been focused like laser beams on marriage equality, an issue dear to the hearts of the privately insured, mostly white professionals who fund them. The young gay men of color at greatest risk and carrying the greatest burden of new HIV infections aren’t priorities. As Sean Strub put it, “Remember how angry we were with the Reagan and Koch administrations when they ignored the crisis and let it rage unabated? What about when we were abandoned by our own community’s leadership and institutions? Why can’t we be angry then as well?”

National Gay Men’s HIV Testing Awareness Day

(click for more info)

Join NAPWA (and me) For Free

Infected/Affected by HIV/AIDS?

Join the National Association of People With AIDS (NAPWA). NAPWA is doing amazing work advocating for people HIV infected- and affected. It’s important that they have people from rural areas in their membership, so if you are HIV+ and live in Montana (or other rural areas) I would encourage you to join. From their mission statement:

Founded as a 501(c)(3) charitable organization in 1983, NAPWA advocates for the lives and dignity of all people living with HIV/AIDS, especially the more than a million Americans who live with it today. We want the epidemic to end, and we want life to be better for people with HIV until it does.

They are offering- for the first time ever- a free one year membership. To join me as a NAPWA member, click here:  http://www.napwa.org/freemembership

ADAP Watch

From NAPWA: Recently released supplemental federal funding is slowly bringing state waiting lists down – 2,552 this week. Regional disparities are troubling, though. Ninety percent of Americans on ADAP waiting lists are in the South. The only non-Southern state with comparable numbers is Nebraska. The South is where HIV is spreading fastest, and providing HIV drugs to those who need them would help prevent new infections.

Here are the latest numbers from our friends at NASTAD:

ADAP Watch 4/19/12

Last week (while I was on vacation)- NASTAD released the ADAP waiting list. From NAPWA (emphasis mine):

There’s some good news on the ADAP front: the FY 2011 emergency federal ADAP funding has brought waiting list numbers down in a number of states. South Carolina has eliminated its waiting list altogether, for the time being.

The bad news is that the numbers aren’t coming down very much. Georgia and Virginia – big states with big budgets – account for almost two-thirds of the nation’s total waiting list, and it looks like they are accepting their waiting lists as the “new normal.” Other states have disguised their real unmet need by setting income eligibility ceilings artificially low, and that looks set to become the “new normal,” too.

It’s hard to understand and hard to forgive. Over five years, it will cost the states with visible waiting lists or waiting lists whisked away by lowering income ceilings more to care for PLWHA who become sick enough for Medicaid than it would have cost to give them drugs to keep them healthy. It’s already a dollars-and-cents blunder before we even think about the human cost.

Here are the latest numbers from our friends at NASTAD:

ADAP Watch March 12, 2012

From our friends at NAPWA:

 

The President has called for The End of AIDS in America, and that means an end to ADAP waiting lists. Everyone who needs HIV antiretroviral medicines should be getting them, and we can reduce long-term health care costs by making sure they do.
This is an extraordinarily difficult political climate, though, so we don’t expect much movement on the waiting lists until after the elections. We’re grateful to the Administration for the new money that brought the counts down from 9,000-plus to just under 4,000, and we think it’s time for states like Virginia and Georgia to join the Administration and pay their fair share. Belly up to the bar, boys!
Here are the latest waiting list numbers from our friends at NASTAD. Let’s not forget that these are the visible waiting lists. Too many states have vanished PLWHA who used to qualify for ADAP assistance by setting income eligibility ceilings unreasonably low.

AIDS: “The Unnecessary Epidemic”

This eloquent, excellent article is from The National Association Of People With AIDS/HIV (NAPWA) newsletter, Positive Voice. It outlines many of the challenges we face as a country- including homophobia, stigma, and stinginess- in getting HIV under control:

This is an exciting time for all of us who live with HIV or are affected by it. Theoretical models predicted for years that treatment-as-prevention could work, and the last year confirmed it. In the elegantly designed HPTN 052 trial, results showed that serodiscordant heterosexual couples had a drastically reduced risk of infection for the HIV-negative partner when the positive partner was receiving effective treatment with antiretroviral drugs.British Columbia didn’t wait for trial results. For several years, the province has aggressively sought to find and treat as many HIV-infected people as possible, and the numbers of AIDS deaths and new HIV infections are now coming down. Dr. Julio Montaner, father of the B.C. program, remarked recently that the falling number of (known) new infections was not the result of less testing, or of safer sex. That leaves only one plausible explanation: reduced community viral load.

So we can end this epidemic. It’s time to start calling it The Unnecessary Epidemic.

As NAPWA President and CEO told us in the previous issue of Positive Voice, ending the epidemic will take resources, resources, resources. Resources for high-impact prevention programs. Resources for treatment and support services for all who need them. Resources to fix an unfair health care system.

But it’s also going to take more than resources. It will take changes in public attitudes. Twenty percent of Americans living with HIV don’t know it. Some of them don’t because prevention and testing programs haven’t reached them. Other don’t because having HIV can be so stigmatizing that they would really rather die slowly than know their status.

So let’s look at some public drivers of HIV stigma, and then look at the consequences.

The evils of “second-hand sodomy”

On the site Conservapedia.com – think of it as Wikipedia for the “right”-minded – Americans for Truth (!) president Peter LaBarbera writes, Why isn’t there a concerted government effort – akin to the current anti-smoking campaigns – to reign in homosexual promiscuity – beginning with closing down all sex businesses (bathhouses) that facilitate homosexual perversion? (Of course, we favor closing down straight prostitution businesses as well.) We know that bisexual behavior (men on the “down low”) help spread dangerous diseases to the general population: how many deaths and illnesses have to result from “second-hand sodomy” before authorities take corrective action?

Translation: it’s all the gays’ fault. If we could just shut down all gay sex, the epidemic would go away. Never mind that a majority of African Americans living with HIV are women, in numbers that could not possibly be accounted for by some partners’ “down low” adventures, and HIV in Africa was a heterosexual disease from day one. LaBarbera is saying that sex he disapproves of is perversion, perversion leads to disease, and “second-hand disease” is tantamount to murder.

Just as bizarrely, Dr. Peter Duesberg continues to contend that HIV is harmless and AIDS is caused by gay sex and drug use. Somehow, we just don’t think most of the African American women living with AIDS have been having gay sex and sniffing poppers…. And never mind the experience of people with HIV who were on the ropes in 1996, when drug cocktails based on protease inhibitors were just coming into use, and eight weeks after we started our new drug regimens our viral loads were down, our T cells were up, and our dermatologists were telling us we didn’t have to come back anymore for our every-two-weeks appointment to zap new KS lesions. Practical lesson: control the HIV and the AIDS symptoms go away. Conclusion: the virus causes the symptoms. Discussion over, Dr. D.

Not victim-free expressions of opinion

We can laugh at these extreme opinions, but publishing them is not a victimless crime. Duesberg’s opinions delayed wide use of antiretroviral drugs (ARVs) in South Africa for years, and people died. The shame about non-majority sexual orientation spread by Conservapedia and others keeps people who know they should get tested from doing so and having to live with a positive result. Using criminal law as a (failed) tool to prevent new infections drives infected people and injection drug users underground, where prevention and treatment services can’t reach them.

How the Grinch stole your needle exchange

The 2013 federal budget just passed reinstates the former ban on federal funding for one of the most targeted, cost-effective HIV programs ever conceived: injection needle exchanges. The ban was one of many prices, just before Christmas, for passing any budget at all. The underlying thinking may have had something in common with Conservapedia’s panacea of outlawing gay sex: just say “there ought to be a law,” whether it’s a matter law can deal with effectively or not. It can’t, and we wonder whether many members of Congress demanding the ban knew that. Certainly those with competent health policy staffers did.

Naming stigma – and praising constructive action

As a community of people who live with HIV or serve those who do, we have a responsibility to call out stigma wherever we see – HIV stigma, homophobia, unease with transgendered people, the cruel expectation that people trapped in sex work or drug use are in control and should just go cold turkey and quit. This is more important than any quarrels we may have among ourselves about PrEP, condoms, or whether to concentrate on developing a preventive or therapeutic vaccine first (scientific accident will decide that for us).

 To join the National Association Of People with AIDS/HIV, click here.