AIDS Action Committee’s Blog

Hello, New York Times… HIV isn’t making an alarming comeback; it has never gone away. It never stopped infecting and affecting our communities. It never stopped taking our friends and loved ones. What happened is that HIV has moved from the front pages of our newspapers, from the screens of our televisions, and from the forefront of many minds, and ultimately from the pens of funders. As the Director of The MALE Center, I cannot tell you how many times that I hear the question, “HIV is still around?” when I explain what I do.

The silence has been forced over many years. The muzzles of the CDC, federal and state material review panels, and the mandate from funders that agencies must utilize “boxed” interventions have stifled effective and grass roots HIV prevention and treatment in this country. Agencies had to throw away prevention materials and interventions because they were “too explicit” or “too racy” to be used in the community or because the agency lacked the funds to prove them effective. We have been mandated to tone down our language or face censure from our funders. Boxed effective interventions that have been created and tested in the early 80’s, often in populations unlike ours, are what we are required and forced to utilize in the new millennium.

The structure of our funders and their inability to work together has failed to mitigate the changing epidemic of HIV and has failed to coordinate local prevention efforts. We know that HIV is a complex issue. To address HIV, one must utilize a multifaceted approach to health. HIV prevention cannot occur in a vacuum. It occurs with the complexities of substance use, mental health, STDs, homelessness, violence, racism, homophobia, stigma, employment, socioeconomic status, and fear, just to name a few. Linear funding streams inhibit coordinated, comprehensive, and synergistic programming.
Bureaucratic indoctrination to doing nothing beyond what has been “proven” has led to limited funds for innovation and creativity. It has effectively gagged the true voices of HIV prevention. The “proven” has also led to increased infection, decreased concern, and a malaise of apathy. Gay men have been at the forefront of this epidemic. We are a resilient community. We have no less need to band together now than 25 years ago. Our voices are not silent, but our messages are not unified. This is the call to action! Find your voice and in doing so help create ours!

The MALE Center provides the opportunity to mobilize, empower, embrace and promote our community. Contact us to get involved!

Let’s be clear. The silence described by the NY Times in HIV Rises Among Young Gay Men is the result of explicit policies of the CDC, which have hamstrung prevention efforts by rewarding poorly vetted cookie-cutter approaches and stifling innovation and efforts at community building.

In June 1992, the waning days of Bush 41, the CDC created Program Review Panels “to consider the appropriateness of messages” used by recipients of CDC funding to communicate with various groups. [Source.] The Review Panels were to take their guidance from federal law which explicitly prohibited education “designed to promote or encourage directly, homosexual… sexual activity.” (It also prohibited messages designed to promote heterosexual activity but there are already plenty of supportive messages about heterosexuality throughout the culture.) The universal response of anyone who has prepared prevention materials in light of these Program Review Panels is that the Panels have a chilling effect on prevention work. Any comparison of the gay prevention efforts of the 80s to those of the 90s clearly illustrates the move away from condom distribution and edgy, graphic messages designed to catch the attention of a younger gay population.

Systems produce the results they were designed to produce. It should be no surprise that dramatic increases in HIV infections have resulted from the prohibition of messages positively portraying gay sexual activity.

The Times is right–there is a silence. But the silence has been imposed by the government while it is the gay community that is increasingly paying the cost.

David Ernesto Munar, Vice President for Policy & Communications for AIDS Foundation of Chicago wrote a blog post below for the Prevention Justice Mobilization, commenting on the need for a national AIDS strategy as well as the CDC’s reluctance to release new HIV infection rate numbers. He is reporting from the National HIV Prevention Conference currently underway in Atlanta

Viral Marketing
By David Munar
ATLANTA–Resolute in its decision to delay the release of alarming new HIV infection estimates, the Centers for Disease Control and Prevention (CDC) kicked off the National HIV Prevention Conference amid widespread anger and concern that the nation may be losing ground in the fight against HIV/AIDS.

With speculation mounting about the motives and content of CDC’s unreleased data, official speeches of compassion and urgency received polite applause from the hundreds of assembled participants who seemed either unmoved or unconvinced.

Remarks from the openly HIV-positive co-chair of the HIV Advisory Committee for CDC and HRSA electrified an otherwise sedated opening plenary. Acknowledging a need to voice what might otherwise not be said, Jesse Milan Jr. told the audience the time had come for the U.S. to develop a national strategy against HIV/AIDS-something federal contracts require of developing nations that accept U.S. taxpayer money for AIDS relief.

Increasingly, the call for a national AIDS strategy is emerging wherever the topic of HIV is discussed. In an era of sustained funding bans for proven effective interventions, such as sterile syringe availability and comprehensive sexuality education, the fledging campaign has become its own promising “structural intervention.”

Inspired by an Open Society Institute report documenting the rationale and components an effective strategy development process, several leading AIDS organizations began promoting the idea among allied organizations earlier this year. The idea took hold like wild fire. More than 180 organizations and hundreds of individuals have endorsed the online “call to action” for a national AIDS strategy thus far.

Read more.

A week after saluting our fallen soldiers on Veterans Day, and days before food and football feasting on Thanksgiving, we honor and reflect on our murdered transgender brothers and sisters on the International Transgender Day of Remembrance (TDOR) on Nov. 20.For some, it’s a day on the calendar. For me, it’s a day of vivid, visceral feeling because I know one thing: that on any day of any year, as a transsexual Latino man, I could be among those killed. I could, like too many others—remembered or forgotten—be attacked by someone with no regard for my life, someone who may not face responsibility for his or her brutal act of violence. TDOR remembers our dead and celebrates our lives.

The penalties for killing or firing someone like me are topics of debate in the halls of Congress, in the media and at people’s dinner tables. It’s troubling to realize that the protections most of us take for granted must be justified for the transgender community—we must convince people of our humanity. Those attitudes are humbling in their cruelty and destructive potential.

When I was five, I told my parents that I was “born wrong.” I didn’t have other language for it, but I knew I felt like a boy, despite being born female. My mother embraced me and showed me a magazine cover featuring Christine Jorgensen, then the most visible transsexual woman. She held me and told me it would be okay. Like every mother, I’m sure that she wished her embrace could protect and keep me safe in the world. But it couldn’t and it can’t.

In the trans community, experiences like mine are rare. Life has treated me gently and kindly. I was dually socialized. Mom gave me lessons for girls. Dad gave me tools to be a wise gentleman. I studied hard, enjoyed people, sports and music and built a successful career. I’ve reached my 50th birthday. So many of us are murdered well before our prime. That’s humbling, too.

In 1998, a transgender woman named Rita Hester was murdered in Massachusetts—a crime that remains unsolved. It was in Rita’s honor that Gwen Smith of San Francisco began a tradition of taking a day to reflect upon the lives lost to hate violence, which is today known as the Transgender Day of Remembrance. I sat with Kathleen Hester, Rita’s mother, at Boston’s TDOR. I gained the courage to endure the pain of lives mercilessly taken when I saw her eyes and heard her speak of Rita with love and longing.

While I spent the first part of my career in Fortune 100s, the second is about social justice and healthcare access. Today at AIDS Action and the AIDS Action Committee of Massachusetts, I take on the thinking that trans people are less than human, undeserving of the rights and access to which other people are entitled. I challenge health insurers with policies that explicitly deny trans people coverage. I fight to eradicate discrimination against trans people in employment, public accommodations, credit and housing. And I battle the ignorance and fear that puts our community at risk of violence. Murder is the most blatant expression of hate and intolerance toward transgender people. But there are subtler forces at play that slowly do harm to the lives of transgender people—discrimination and stigma.

We transgender and transsexual people rely on each other, on allies, on biological or created families, and on society’s rules to embrace us. TDOR allows others to stand beside us and to mourn those we have lost. Each year, I spend TDOR with Ethan St. Pierre, a trans activist, web radio host, and nephew of Debra Forte, another murdered transgender woman. For us, it’s personal.

My work gives me a unique perspective on policy’s impact and people’s power. There is hope—small victories matter. This year, the Italian Parliament will recognize TDOR, following the election of its first transgender member, Vladimir Luxuria. For the first time, both houses of Congress have approved a fully-inclusive hate crimes law that would expand protections to cover violence based on a victim’s sexual orientation and gender identity.

This year there were 63 TDOR vigils in seven countries. Take the time to educate yourself about the issues surrounding TDOR. Your support matters. More information on TDOR is available at www.RememberingOurDead.org. Showing your humanity affirms that we are equally human.

Last year, the Commonwealth passed a law that requires all residents of Massachusetts 18 and older to have health insurance, if an affordable plan is available to them. Everyone must be signed up for coverage by December 31, 2007 to avoid financial penalties.

This means the deadline to sign up for coverage is quickly approaching. Because coverage for most insurance plans begins at the beginning of the month, the state is encouraging all eligible citizens to sign up for plans by November 15, 2007. Since it usually takes a few weeks to process an application, the 11/15 date should ensure that people are covered sometime after 12/1/07 but well before the 12/31/07 cut off date.

Massachusetts will be enforcing this law through personal income taxes. People will be given a special form with their state income tax form to prove that they had coverage as of December 31, 2007. The penalty for non-compliance is the loss of the personal income tax exemption, which is about $219.00. Beginning in January of 2008, the penalty will go up. People will be fined for every month they do not have coverage.

To get help figuring out if you need insurance, what kind of insurance you can get, and how much that may cost you, check out these resources:

More information from AIDS Action
The Health Connector customer hotline: 1-877-MA ENROLL (623-7655)
The Health Connector website: http://www.mahealthconnector.org/
Health Care For All health reform hotline: 800-272-4232

This week controversy broke out over a proposal to remove “gender identity” as a protected category from the ENDA. Proponents argue that removal would improve the odds of the bill passing the House and gender identity could be added after the passage. It reminds me of the arguments in the 80s about whether gay men should be identified as gay when reporting AIDS cases or whether the phrase “men having sex with men” should be used. Congressional staffers and Washington groups argued vigorously for MSM, claiming that it’d be easier to work around the homophobes and more money could be obtained for AIDS if the gay thing could be glossed over. The social scientists liked it because they argued people of color would be more easily reached than if they had to identify as gay. On the other side were activists who argued that “MSM” ignored the existence of the gay community, with its complex and non-biologically based family structure, reducing the focus to an individual and a sole behavior. The activists argued that effective intervention could not occur in isolation from people’s communities.

Well, its been over 30 years now and we’re still using MSM, got a lot of money–not enough, of course, but a lot–and we have seen a steadily increasing percentage of new infections in gay men, particularly gay men of color. Now I’m hearing the same argument for expediency to support the removal of gender identity. Transgender people are already at increased risk of HIV infection, for reasons of isolation, economic marginalization and difficulty accessing health care–familiar reasons to gay health activists. Excluding gender identity from federal protection is not going to pass the bill–no one thinks its going to get out of the Senate, but it will further fracture our community and subject a valued part of it to increased health risk. Let’s not do it again.

“We have a moral imperative to do much more and do it much better.”

Following up on the call for a national AIDS strategy — John Edwards is the first Presidential candidate to unveil a comprehensive plan to fight the HIV/AIDS epidemic at home and abroad.

Joe Sudbay over at AMERICAblog has a post today talking about the need for a focused plan to end the AIDS epidemic, and the National AIDS Strategy that’s trying to make that a reality.

We’re all hearing a lot about the 2008 presidential race already, and the National AIDS Strategy is working to focus the candidates on the need to seriously address the problem here at home. It’s called for every candidate to develop a results-oriented strategy to fight HIV/AIDS domestically.

On the table is not only the fact that an estimated half of the million-plus Americans living with HIV/AIDS are not in care, but the huge disparities in who’s affected by the disease: the disproportionately high impact the epidemic is having on people of color, women of color (as the site points out, in 2004, HIV/AIDS was the leading cause of death among black women ages 25 - 34; for more on the impact of HIV on all women, see this post), gay men and other groups that can easily be made invisible in politics.

AIDS Action Committee of Massachusetts and hundreds of organizations and individuals have already signed on to send the message to the candidates that this should be a priority. Hopefully they’ll listen. We urge our supporters to sign on and to ask other organizations and your friends and family to sign as well.

Find out more at www.nationalaidsstrategy.org.

Thanks to AIDS Action’s Public Policy All Stars, you probably already know that the Massachusetts Department of Public Health recently switched to names-based system for reporting new HIV cases. Between 1999 and 2006, Massachusetts reported on its HIV cases using unique identifier codes to maintain confidentiality. Starting January 1, 2007, health care professionals are required to report on the names of all people who test positive for HIV infection.

(To read more about this issue, and how it affects people living with HIV/AIDS and the organizations that serve them, check out Denise McWilliams’ written testimony opposing the adoption of names-based reporting in Massachusetts.)

Recently, it was reported that Vermont, Maryland and Hawaii, the last three states to track new HIV infections using unique identifier codes, will be switching to a system of names-based reporting by the end of 2007. Despite the real and continued concerns that names-based reports are vulnerable to security breaches and could discourage people from getting tested, the states are making this switch because beginning this fiscal year, federal funding via the Ryan White CARE Act is going to be tied to names-based reports of new HIV infections. States that don’t submit names-based reports risk a reduction in their allocation of CARE Act funding.

So that’s the old bad news. What’s the new bad news? This article on the switch mentions toward the end that the Department of Housing and Urban Development (HUD) is considering using names-based HIV case reports to drive its funding allocation, proposing to Congress that this change take effect in the 2008 fiscal year. HUD’s Office of HIV/AIDS Housing manages several programs that assist people living with HIV/AIDS, including Housing Opportunities for People with AIDS (HOPWA). AIDS Action Committee receives HOPWA funding to administer its Rental Assistance, Housing Advocacy and ROOF (Roofs Over Our Families) programs. Programs like these recognize that people living with HIV/AIDS are more likely to receive stable medical care if they have stable living situations and that housing is one of the main concerns of the population that we serve. Tying HOPWA funds to names-based reporting means that existing concerns of confidentiality and under-reporting could soon apply to this funding source as well, jeopardizing programs that link housing to health care.

If you’re interested in learning more about issues relating to HIV/AIDS public policy and advocacy, you can join our CyberAction Network.

Today, March 15, is a day of bountiful and diverse celebrations, amidst National LGBT Health Awareness Week (Mar. 11-17).  It’s the Ides of March, the height of NCAA basketball’s March Madness, the opening of the LGBTI Health Summit and Medical School Match Day, when medical students receive an envelope inviting them to join a medical institution.

For them, it means much excitement and little sleep.  For us, it’s a day of hope.  What do you want from physicians as the next generation is identified and paired with hospitals? Here’s my short list:

Be diverse, like the U.S., and speak the same language – not just share a native tongue – with your patients.  Advise everyone who’s sexually active to receive STD testing.

Neither erase lesbians from condom discussions nor include them for reasons that don’t resonate with them.  Ask questions, and talk about gloves and dams.

Let someone be tested for HIV and not have their name disclosed.  Remember that everyone is at risk for HIV/AIDS, and all conversations should be fair game when they arm people to make the safest choices they can.

Welcome gay and other men who have sex with men to discuss and ask questions about sexual practice without judgment and stigma so that they can get the best medical counsel.  And let’s remember bisexual people, too.

Address trans people by their preferred name, pronoun and gender and know that some men need pap smears and some women need prostate exams.  Don’t forget the intersexed people, either.