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?”

CDC: HIV Cases Decline for Black Women, Increase for Gay Men

Some disturbing news. From Reuters:

The CDC reported that the number of new cases of HIV among black women declined 21 percent between 2008 and 2010, while the incidence of HIV among young gay and bisexual men rose by 22 percent in the same time frame. The rate of HIV infections among black women remains 20 times higher than the number of new cases in white women, and HIV-infected black women account for 70 percent of HIV incidence among all women. Men who have sex with men comprised almost two-thirds of all new HIV infections in 2010.

Joseph Prejean, chief of the Behavioral and Clinical Surveillance Branch in CDC’s Division of HIV/AIDS Prevention, attributed the decline in new HIV cases among black women to HIV testing and the success of HIV

Drugs

Drugs (Photo credit: Images_of_Money)

awareness campaigns. “Treatment advances” for AIDS may have caused young men to underestimate their risk and the health threat posed by HIV”, said Prejean. Although anti-retroviral treatment prolongs life, HIV-infected individuals can expect to take medicine for the rest of their lives, at an estimated lifetime cost of $400,000. (emphasis mine)

Young black men who have sex with men have the highest HIV incidence of any population group within the United States. An earlier CDC report stated that 26 percent of new HIV cases occurred among young people age 13 to 24. Half of HIV-infected young people do not know their HIV status, reported CDC Director Thomas Frieden, MD.

Read the full article here.

Bisexual Men and Women Less Likely Than Gay Men, Lesbians to Disclose Sexual Orientation

English: Illustration of the double moon symbo...

English: Illustration of the double moon symbol used by bisexuals who wish to avoid the use of triangles. This example is in the colours of the Bisexual Pride flag. (Photo credit: Wikipedia)

New research shows that bisexual men and women are less likely than gay men and lesbians to disclose their sexual orientation to healthcare providers.  The study, which examined nondisclosure of sexual orientation among lesbians, gay men and bisexual men and women, found that concealment of sexual orientation from healthcare providers was related to poor psychological wellbeing.

“This study adds to a growing literature that shows that a one-size-fits-all approach to understanding the health of sexual minorities ignores differences among subpopulations within this community,” said Laura Durso Ph.D., Williams Institute Public Policy Fellow.

Nondisclosure was higher among bisexual men of whom 39% did not disclose to any medical provider and bisexual women of whom 33% did not disclose to any medical provider.  Disclosure was much more prevalent among gay men and lesbians among whom only 13% and 10%, respectively, did not disclose their sexual orientation to any medical provider.  Among lesbians, greater nondisclosure was found among racial/ethnic minorities, women with lower educational level, and women with children. Among both gay and bisexual men, greater nondisclosure was found among younger men and men who were born outside the U.S.

The study, entitled “Patterns and Predictors of Disclosure of Sexual Orientation to Healthcare Providers among Lesbians, Gay Men, and Bisexuals,” was funded by the National Institute of Mental Health and is published in Sexuality Research and Social Policy.

Full study: click here.

Study: Access to HIV Services for Gay Men Worldwide Stunted By Homophobia

Global study finds homophobia, comfort with service provider, and community engagement make significant impact on access to condoms, lubricant, HIV testing, and HIV treatment

A large-scale study of gay men and other men who have sex with men (MSM), conducted by the Global Forum on MSM & HIV (MSMGF), indicates that only one third of MSM can easily access condoms, lubricant, HIV testing, and HIV treatment. Combining a multi-lingual online survey and focus group discussions, the study suggests that structural barriers like homophobia play a significant role in blocking access to HIV services for MSM, while greater comfort with service providers and community engagement are associated with higher levels of service access.

The MSMGF’s study aimed to identify barriers and facilitators that affect access to HIV services for MSM. The online survey conducted this summer included 5779 men from 165 countries.  In addition, the MSMGF collaborated with African Men for Sexual Health and Rights (AMSHeR) to conduct focus group discussions with a total of 71 MSM across five cities in South Africa, Kenya, and Nigeria.

Of men who participated in the online survey, only 35% reported that condoms were easily accessible, 21% reported easy access to lubricant, 36% reported easy access to HIV testing, and 42% reported easy access to HIV treatment. Levels of access differed across low-, lower-middle-, upper-middle- and high-income countries, with reduced access to services more commonly reported in lower-income countries.

Percent of MSM reporting that condoms, lubricant, HIV testing, and HIV treatment
are easily accessible
(organized by country income level using World Bank country income classifications)

“Such poor levels of access at the global level are unacceptable,” said Dr. George Ayala, Executive Director of the MSMGF. “The differences in access by country income level are especially important to note as the Global Fund moves into a new funding model where countries are grouped into bands by income level. Even in upper-middle-income countries, MSM still have extremely low access to services. Without targeted funding to MSM and other key populations, the new funding model may continue to deteriorate levels of access for the groups most affected by HIV.”

The MSMGF research team also conducted analyses to identify barriers (factors associated with lower access) and facilitators (factors associated with higher access) that impact the ability of MSM to obtain condoms, lubricant, HIV testing, and HIV treatment.

Adjusting for country income, greater access to condoms, lubricants and HIV testing were associated with less homophobia, greater comfort with health providers, and more community engagement. Among participants living with HIV, higher access to HIV treatment was associated with less homophobia and greater comfort with service providers.  Greater access to lubricants and greater access to HIV testing were also associated with less outness (the degree to which others know of one’s sexual orientation) and fewer negative consequences as a result of being out, respectively.

“As we collectively forge ahead into the new territory of treatment-based prevention, it is clear that many of the old challenges remain,” said Noah Metheny, Director of Policy at the MSMGF. “Addressing structural barriers remains essential to realizing the potential of HIV interventions for MSM, and it becomes more important with each new prevention and treatment option that is made available. Investments in the development of new interventions must be accompanied by efforts to increase access.”

The quantitative data from the online survey was supplemented with qualitative data from focus group discussions, helping to place barriers and facilitators in the broader context of the sexual health and lived experiences of MSM. Focus group discussion participants identified barriers and facilitators that were highly consistent with those found in the online survey, and many participants explained the ways that structural barriers at the policy, cultural, and institutional levels cascade down through the community and individual levels to block access to services for MSM.

Focus group discussion participants described how structural barriers like stigma, discrimination, and criminalization force MSM to hide their sexual behavior from health care providers, employers, landlords, teachers, and family members in order to protect themselves and maintain a minimum livelihood. The inability of MSM to reveal their sexual behavior to health care providers was linked to misdiagnosis, delayed diagnosis, and delayed treatment, leading to poor health prognosis and higher risk of transmitting HIV and other sexually transmitted infections to partners.

Conversely, focus group discussion participants explained that the negative consequences of structural barriers were moderated by the existence of safe spaces to meet other MSM, safe spaces to receive services, access to competent mental health care, and access to comprehensive health care. Participants described MSM-led community based organizations as safe spaces where they could celebrate their true selves, receive respectful and knowledgeable health care, and in some cases receive mental health services.

“The study’s findings underscore the urgent need to improve access to essential HIV services for gay men and other MSM worldwide,” said Dr. Ayala. “Interventions must both disrupt the negative effects of barriers and bolster the protective effects of facilitators. Study participants clearly indicated that community engagement and community-based organizations are central to moderating barriers and facilitating service access. Successfully addressing HIV among MSM will require a real effort to address structural barriers, and the findings from this study suggest that investing in MSM-led community-based organizations may be the best way to do that.”

Agreed. MSM-led community-based organizations must continue to work tirelessly to eliminate fear, shame, stigma and ignorance. They are all still very much with us.

And they’re killing us.

Related articles

For Men Only- Your Sexual Health

From the National Association of State and Territorial AIDS Directors (NASTAD) and the National Coalition of STD Directors (NCSD) comes a new pamphlet aimed at helping men who have sex with men (MSM) take charge of their sexual heath:

“Whether you are gay, bisexual or any man who has sex with other men (MSM), there are certain health services that are important for you to talk about with your doctor to protect your sexual health. This brief pamphlet is designed to help you get the best sexual health care during your visit to the doctor.”

An amazing array of helpful information about special health concerns and working with your healthcare provider.

View “For Men Only- Your Sexual Health” here.

Hard Truths (About Gay Men & HIV)

From NAPWA’s Positive Voice Newsletter:

National Gay Men’s HIV/AIDS Awareness Day – NGMHAAD – is coming September 27, three months to the day after National HIV Testing Day, and hard on the heels of July’s landmark International AIDS Conference (IAC) in Washington, D.C. We have two messages this year: Be aware, know your risk, and, Let’s end this epidemic! Because we matter – and we can.

Speaker after speaker at IAC returned to this year’s good but challenging news: yes, we still need more science to stamp out HIV – more and better antivirals, an effective vaccine, and a functional cure - but we already have all the biomedical tools we need to make new HIV infections a thing of the past. The hard part is reaching “key populations” – groups with high rates of existing infections and new infections because they have been marginalized, stigmatized, denied civil rights, and excluded from health care.

NGMHAAD is for one of those “key populations:” this country’s men who have sex with men (MSM). NAPWA founded NGMHAAD in 2008 because we want them to know the epidemic isn’t over. We want them to know how high their HIV risk really is – because so many are already infected, and too many don’t know it. And we want them to know that we’ve come a long way since AIDS was first reported in 1981, and even further since Stonewall, but stigma is still driving this epidemic and gay men don’t have to take it anymore.

So let’s look at some numbers and see what that the gay men’s HIV epidemic looks like in the U.S.

The July 28 issue of The Lancet opened an admirable series of articles on HIV among gay men worldwide with a look at epidemiology, and reported that HIV prevalence among men who have sex with men in its North American region is a jaw-dropping 15.4% - almost one in six. The real prevalence may be a little lower - The Lancet assumes that only 3.7% of American men are MSM, a number we think is too low, and raising the estimated number of MSM would reduce the calculated prevalence a little – but it’s still clear that prevalence is breathtakingly higher among MSM than in the rest of the population.

Let’s calculate just how much higher.

About 251 million Americans are 15 or older. If 5 percent of the men are MSM, we have 6.3 million MSM and 245 million “others” 15-and-older in this country. We’re all familiar with the CDC’s estimates that 1.2 million Americans are living with HIV, and 60% of them are MSM. That gives us 480,000 infections in 245 million “others,” for a prevalence of 0.2% – one in five hundred. It also gives us 720,000 infections in 6.3 million American MSM, for a prevalence of 11.5% – just shy of one in eight. HIV prevalence among American MSM is almost 60 times what it is in the rest of the population.

That means HIV-negative MSM who are active with partners whose status they don’t know are at much higher risk than many realize. So the first and most important message of National Gay Men’s Awareness Day is – simply - be aware. Know your status. Know your risk. If you aren’t absolutely sure you know your own and your partner’s status, keep your condoms handy.

In September 10′s Positive Voice, we’ll write about how we got to where we are and what’s needed to deal with the MSM epidemic on the ground. Why near-universal testing is so important when prevalence is already so high. The need to confront stigma and talk frankly about sex in communities where this is deeply uncomfortable. The need for pride and love. The need to have culturally competent and welcoming health care for MSM.

And in the September 24 issue, just three days before NGMHAAD, we’ll remember the quarter-million (at least) American MSM who have died of AIDS and examine our responsibility as their survivors to demand action to end this epidemic once and for all. Now that we can, we must.

Gay Men’s Wives, Homophobia and HIV

(click for source)

Discrimination and homophobia are often more prevalent in rural areas. Outreach workers in Montana know that there are certainly barriers for men to being tested for HIV. One of the most significant is the fear of being harshly judged, labelled and dismissed. It’s one of the reasons some gay/bi men get married to women and start families- they want to be ‘normal’- even though they already are. The sense of shame and guilt can be overpowering- and it’s adding fuel to the fire as far as HIV is concerned.

Rural outreach workers have known this for years- it may be one of the reasons that HIV is spreading so rapidly in the south. It’s almost certainly one of the reasons that HIV is spreading in the African American population. But we haven’t paid much attention- at least scientifically- to this issue. Now it looks as if science is actually catching up to reality. From The Sobering Truth About HIV Among MSM by Gregory Trotter, Chicago AIDS Foundation blog (July 25):

The idea of “turning the tide” against the AIDS epidemic will prove to be no more than a slogan if more is not done to address the growing number of gay/bisexual men infected with HIV worldwide, experts said today.

Speaking at an afternoon press conference today, a panel of experts presented new research – recently published in a series in the medical journal, The Lancet – that confronted the reality of HIV prevalence among MSM (men who have sex with me).  The series concluded that, in addition to medical and scientific advances, more must be done to eradicate the cultural and societal impediments of homophobia and discrimination. Until that happens, ending the AIDS epidemic is unlikely, said Chris Beyrer, a professor at Johns Hopkins Bloomberg School of Public Health. (emphasis mine)

We routinely encounter discrimination in dealing with MSM in Montana- some of whom do not openly identify as gay. In fact, some are married- with children- and do not plan on leaving their families. But they’re having sex with other men- and some are not using condoms with their wives. “If I did, she’d know I was having sex with someone else,” one client told me.

The fear of being exposed for these men is great. One man told me, “I can’t afford to be seen as gay. It would kill me- it would kill my wife.”  Shame from society, churches and social groups abut being gay have forced men to create false lives. But they haven’t stopped sexual behavior. This type of internalized shame is not uncommon here- and the wives of these men could be put at risk as a result.

Shame, homophobia and discrimination are fueling the epidemic- so are apathy and denial (see my essay Gay Men Are Flunking The Test). Part of me wonders when we’re going to start seeing a rise in HIV infection among rural women- the wives of gay/bi men. Back to Mr Trotter:

On average, MSM are 19 times more likely to be infected with HIV than the general population in low- and middle-class countries, according to Dr. Kevin Fenton, director of the National Center for HIV/AIDS.

Many African countries do not accurately report numbers of MSM and some do not even acknowledge they have MSM among their population, said Paul Semugoma,  Uganda physician who serves on the steering committee for the Global Forum on MSM &HIV (MSMGF).

Homophobia is rampant in such countries, he said.

“If we don’t start solving these impediments for MSM, we’re not going to do much about the epidemic,” Semugoma said.

In a recent study in Jamaica, 82% of Jamaicans self-identified as homophobic, largely out of fear of HIV prevalence among gay/bi men, said Maurice Tomlinson, legal advisor on marginalized groups for AIDS-Free World, an international advocacy group.

Such homophobia has engendered a climate where gay men are afraid to buy condoms for themselves, Tomlinson said. Their female friends often buy condoms for them, he said, but refuse to buy lube, as that would imply a female “deficiency.”

And so many gay/bisexual Jamaicans use petroleum jelly, saliva or even hairspray as a lubricant, he said.

“In those cases, it would be better if they used nothing at all,” Tomlinson said.

To learn more about how HIV affects MSM throughout the world and possible solutions to problem, read the full series in The Lancet titled HIV in Men Who Have Sex with Men.”