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?”

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.

HIV 2fer: Early Treatment Works and Truvada Prevents

HIV DataToday’s HIV News shelf is crowded. Two stories on the HIV front involve good news about early HIV treatment and Pre-Exposure Prophylaxis(PrEP) to reduce infection rates among high-risk persons.

A study (popularly known as the Setpoint Study) finds that people newly-infected with HIV-1 who immediately start anti-retroviral therapy are more likely to have beneficial medical outcomes than those who wait until CD4 counts fall below medically acceptable levels (currently 350-500 depending who you talk to).

“This is very welcome news,” said Frank J. Oldham, NAPWA President and CEO. “The study supplies scientific confirmation of something we at NAPWA have always believed: the closer we can come to bringing all people living with HIV into treatment, and the earlier they start treatment, the better. We already knew this is true for populations as a whole: more and earlier treatment means fewer new infections. Now we know that – on the whole – it’s also better for individuals already infected.”

The news on the HIV front just keeps getting better. The setpoint study follows on the heels of a groundbreaking study which provides proof of HIV treatment as prevention: HIV-infected persons on medication with undetectable viral levels are 96% less likely to pass on the virus.

It also accompanies Gilead’s application to offer Truvada as the first drug marketed to prevent HIV:

Gilead Sciences Inc. announced that it has submitted a supplemental New Drug Application (sNDA) to the U.S. Food and Drug Administration (FDA)for the approval of once-daily Truvada (emtricitabine/tenofovir disoproxil fumarate) for pre-exposure prophylaxis (PrEP) to reduce the risk of HIV-1 infection among uninfected adults. Truvada was approved by the FDA in 2004 for the treatment of HIV-1 infection and is currently the most-prescribed antiretroviral treatment in the United States.

If the sNDA is approved, Truvada would be the first agent indicated for uninfected individuals to reduce the risk of acquiring HIV through sex, a prevention approach called PrEP. The sNDA is based on the results of two large placebo-controlled trials of Truvada as PrEP, sponsored by the U.S. National Institutes of Health (NIH) and the University of Washington. Several other clinical studies support the use of Truvada for HIV risk reduction.

“The data from these large-scale clinical trials suggest that Truvada may have a role to play in meeting the urgent public health need to reduce new HIV infections,” said John C. Martin, PhD, Chairman and Chief Executive Officer of Gilead Sciences. “Gilead is proud to have played a part in helping to define the use of Truvada as a potential new prevention tool and we commend the many institutions, investigators and study volunteers for their commitment to advancing this important area of research.”

Truvada is not currently labeled to reduce the risk of infection, it is labeled only for HIV treatment.

This could be an important step in slowing HIV. Around 50,000 people are still being infected with HIV every year in the U.S. according to the CDC. More than half of new infections (61%) occur among men who have sex with men, and nearly a quarter (23%) occur among women.

If Truvada can be given to high-risk persons (which includes negative partners in a sero-discordant relationship) and insurance companies will pay for it, it may, along with the groundswell of early treatment science, start a trend of slowing the progression of HIV in this country.

But only if we can get more high-risk people in for testing and treatment….

When was your last HIV test?

Voting For HIV

I am a member of NAPWA, the National Association of People With AIDS/HIV.  As a member, I receive their monthly email newsletter, which has a lot of information regarding HIV, tips for self-care, advocacy and political activism. Frank Oldham, the President and CEO had a column this month that really put some things in perspective for me.

It’s been a pretty interesting election year. NAPWA, as a 501(c)(3) charitable corporation, is not permitted to support or oppose individual candidates or political parties, so we can’t name names – but we can share our general observation that some of this year’s candidates would be pretty grand entertainment if there weren’t a real chance they might get elected.

It’s also been one of the nastiest campaign seasons in recent memory, and a lot of us just want it to end and go away. Here are some reasons to get to the polls and vote anyway.

· Defend the Health Care Reform Act.

Imagine a world where insurance companies can’t ask about preexisting conditions and use our answers to deny us coverage or cover us differently! We’ll have to wait until 2014 for full implementation of that, but it’s in the new law, and candidates who will defend the law against attempts to repeal it outright or amend it out of existence deserve our support. So do incumbent candidates who knew they were risking their seats but voted for the bill anyway; they took a big risk for us.

· The next Congress will – or won’t – fund implementation of the National HIV/AIDS Strategy.

The Obama Administration’s National HIV/AIDS Strategy (NHAS) seeks to reduce the number of new HIV infections, increase access to care and optimize health outcomes, and reduce HIV-related health disparities. All of which is very good news for people living with HIV. It doesn’t mean much, though, if Congressional funding priorities are being set by folks who think anyone who doesn’t look like them is not the “real America.” Simply by being HIV-positive, we don’t look like them. We don’t want a Congress full of elected representatives chanting, “We shouldn’t be spending money on NHAS, ‘they’ wouldn’t have HIV if ‘they’ hadn’t been doing bad things.”

· The next Congress will set the agenda for young people’s HIV-awareness and prevention education.

We’ve seen the lack of results from abstinence-only curricula. Even the current Congress is gradually moving from ideology-driven abstinence-only approaches to evidence-based, frank sex education, and it is saving the lives of our young people. We don’t want to go back.

· There are critical HIV funding needs right now.

State AIDS Drugs Assistance Programs (ADAPs) are in crisis because of the recession which started in 2008. Programs for HIV-positive people with multiple medical or life issues – homelessness, addiction, mental illness – are also finding funds harder and harder to come by. Find out where your candidates stand on HIV services, and vote for those who support funding for them.

The votes of people living with HIV/AIDS are needed now more than ever before! As the leader of NAPWA and an African-American gay man living with AIDS, I know that so much progress and the fruits of hard-fought battles for our health care, protecting Ryan White Care Act services, and our rights as American citizens are at risk right now!

So let’s be sure to know our candidates and choose well. Next issue (November 5), we’ll look at the election results. Win or lose, we’ll all feel better if we did our research and voted our values.

New National HIV Strategy Unveiled

“The United States will become a place where new HIV infections are rare and when they do occur, every person, regardless of age, gender, race/ethnicity, sexual orientation, or socio-economic circumstance, will have unfettered access to high quality, life-extending care, free from stigma and discrimination.”

A  visionary national strategy (the first!) for dealing with HIV has been unveiled. Read it here.

Whatever you might think, this is the first time an administration has actually had a plan that specifically deals with gay/bi men in a light that’s not defamatory and shameful sounding. The government has also appropriated $25 million dollars for ADAP, The AIDS Drug Assistance Program.

From the response by NAPWA, the National Association of People with AIDS:

Overall, the plan is thoughtful and lays down some meaningful and aggressive goals to reduce the number of new infections and improve access to care for persons living with HIV.  President Obama, as part of his campaign for President, promised the nation that he would develop such a strategy; NAPWA thanks the President for fulfilling this important commitment.

Frank Oldham, President and CEO of NAPWA stated “On behalf of the 1.2 million people living with HIV in the United States, I wish to thank the President and Jeff Crowley for releasing this long awaited document.  NAPWA promises to work with the Administration and Congress to ensure that this becomes a living breathing document that has a meaningful and fruitful impact on the lives of people living with HIV.”

Overall, the strategy has three basic goals, which NAPWA wishes to comment on:

(1) Reducing new HIV infections, with a particular focus on communities where HIV is concentrated.  The Administration’s goal of reducing new infections by 25% is an important goal that we must all work together to ensure is not only met, but exceeded.

(2) Increasing access to care and improving health outcomes for people living with HIV.  NAPWA particularly applauds the goals of establishing a seamless system of care for people when they are diagnosed with HIV, increasing the number of HIV clinical care providers, and addressing the complex co-morbid conditions of many individuals living with HIV, including issues such as access to housing.  In light of the current AIDS Drug Assistance Program (ADAP) crisis, with over 2,200 individuals on waiting lists for HIV medications, it is very apparent that this goal will only be met with the significant introduction of new federal resources to meet the growing demand for HIV services.  The Administration and Congress must step up to the plate to provide new federal funding not only to address to the ADAP crisis, but also to help meet the goals laid out in this important plan.

(3) Reducing HIV-related health disparities, including recognizing the role that stigma continues to play in reducing access to care and getting people tested. We at NAPWA recognize on a very person level the major and ongoing role that stigma continues to play in the everyday lives of people living with HIV, including promoting fear, inhibiting disclosure, and reducing persons access to the HIV care they need and deserve.  In order to effectively address the HIV epidemic, reducing stigma must play a major role in any strategy.

Stated Matthew Lesieur, Director of Public Policy, “The release of the nation’s first National AIDS Strategy is only the beginning.  Now the long road ahead lies in making this strategy a reality that has value to the average person living with HIV. “

Founded in 1983, NAPWA is the first coalition of people living with HIV/AIDS in the world as well as the oldest AIDS organization in the United States. NAPWA is the trusted, independent voice of the more than one million people living with HIV/AIDS in America.

For more information, visit http://www.napwa.org.

7/15 Update: Dan O’Neill’s excellent analysis here.