AIDS Action Committee’s Blog

Well it seems the evangelicals have finally found a way to bring AIDS into their special fold of Christian charity—they skip the part about gay men. Apparently, if AIDS is contracted by drug use or unsafe sex between heterosexuals, or better still a transfusion or perhaps maternal-child transmission, God not only permits but encourages ministering to its victims. And, there’s the international waiver—if you’re outside the USA, preferably in some poor benighted African country, it doesn’t matter how you contract it. There’s room for all in the fold. But there still doesn’t seem to be any room at the inn for gay men in the United States.

Sadly, that seems to be a pretty accurate description of this administration’s position as well. Restrictions on proven interventions have essentially read the gay community out of prevention efforts and have resulted in–drum roll please–an increase of infections in gay men! Of course I’m sure that when the CDC does finally, officially, release its increased estimates of annual HIV infection we won’t hear anything about that—but I predict there will be much conversation about the refusal of gay men to abandon their “ways” and significant hand-wringing over their unwillingness to become heterosexuals. Unspoken, perhaps, will be the phrase “Serves them right,” but many of us will hear it nonetheless.

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

Last week, the US Food and Drug Administration (FDA) approved the new HIV drug raltegravir, which is being marketed under the name Isentress. Raltegravir is the first approved drug in a new class of HIV meds known as integrase inhibitors. Drugs in this class fight the virus in a different way from the other classes of HIV meds. When HIV makes copies of itself, it uses the chemical integrase to insert (integrate) its genetic material (DNA) into the cell’s control center, called the nucleus. Once HIV’s genetic material has been integrated into the cell’s own DNA, the cell can become a mini-factory for making new HIV. Integrase inhibitors disrupt this process by interfering with – inhibiting – the activity of integrase.

FDA’s recent action marks its second approval of a new HIV med in a new drug class during recent months. In August, FDA approved the drug maraviroc (marketed as Selzentry), which is in a drug class called CCR5 blockers. CCR5 blockers are designed to stop HIV from entering CD4 T-cells by preventing the virus from binding to a protein called CCR5 on the cell’s surface.

The availability of new drugs in new classes is an important advance in HIV treatment. Drugs in new classes are particularly valuable for people infected with a virus that is resistant to many of the existing HIV drugs – since they offer a fresh shot at controlling the virus. However, like other HIV meds, neither raltegravir nor maraviroc can completely control the virus on their own. To be fully effective, these drugs must be given with other HIV meds as part of a combination regimen.

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.

During the past month, some staff members at the AIDS Action Committee in Boston have been repeatedly contacted by sales reps from a company called Smart Genetics, which makes a test called HIVmirror. They’ve been asking for community input and help to spread the word about the HIVmirror.

The test analyzes the genetic structure of a person’s DNA to look for two specific mutations known as CCR5-Delta 32 and CCR2-64I.

In persons who are already infected with HIV, these mutations have been associated with slower-than-usual progression of HIV infection to AIDS. The mutations may also reduce the chances that an HIV-negative person will become infected.

Smart Genetics is marketing the HIVmirror test directly to consumers for $99. Their sales angle is that people will have additional “peace of mind” if they know they have genes that would slow the progression of HIV infection.

However, I have some serious concerns about the test and its marketing:

1) First, I don’t see any reason why a person should order this test on their own, without consulting a doctor. The test doesn’t indicate whether a person is HIV-positive or HIV-negative, so the concerns about confidentiality and stigma that motivate people to have anonymous HIV antibody tests wouldn’t apply here. There’s no stigma about having genes that might make a person a slow progressor.

2) Perhaps more important: What practical use would this information have to a person?

For HIV-positive persons: Although the presence of one or both genes might slow HIV progression, an HIV-positive person would still need to see their doctor regularly, have CD4 and viral load tests several times a year, and follow the guidelines for when to start or change HIV treatment. One danger is that, if an HIV-positive person concluded from the test that they were a “slow progressor,” they might decide to go it alone and not see a doctor regularly nor start treatment in a timely way.

For HIV-negative persons: If a person learned that they had one or both of these mutations, they might mistakenly think they were “immune” to being infected with the virus. This might lead to greater risk-taking that could ultimately increase their risk of becoming infected.

3) If a person were to have this test, I think they should do it under a doctor’s guidance. The doctor could provide context for the results, with the appropriate cautions for both HIV-positive and HIV-negative persons. But my guess is that most doctors would view the test as unnecessary, since it has few, if any, practical implications for preventing or treating HIV. That may be the reason why Smart Genetics has chosen to market direct to consumers – if you can’t find a compelling reason for a doctor to order a test, try marketing to the patient.

The POZ web site has an article from earlier this year about the HIVmirror test, with more opinions about the concerns that have been raised about it. Here’s the link.

“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.

As someone who has lived a relatively sheltered life, I always viewed homelessness as a problem that was addressed by legislators and officials. It was a problem that never seemed to affect me personally. It had to do with money and resources, and not with me.

And then I went to hear speakers from Youth on Fire, a program that works with homeless youth. Listening to these young people talk about their lives, I was shocked by how like me they were. They were people. They were my peers.

Shunned by a society that has no system of social support in place for them, kids are being placed in danger. My generation is in danger. These people, by virtue of being homeless, are three times more likely to have any type of chronic disease, including HIV/AIDS, than are those who are not homeless (http://www.nationalhomeless.org/publications/facts/HIV.pdf).

What’s worse is the cycle: those who are homeless are at high risk for HIV/AIDS and those who are HIV+ are at high risk for becoming homeless. Without social supports in place to stop this cycle, future patterns are, unfortunately, easy to predict. There is clearly a place within this issue for the legislators, but they cannot be alone. We need a system of people caring about people, not just of laws. It is time for us as a country to care about each other and stop detrimental patterns before they grow beyond our control.

Youth on Fire (Y.O.F.), a program of Cambridge Cares About AIDS, is a drop-in center for homeless and street-involved youth in Cambridge, MA. Through Y.O.F.’s Speaker’s Bureau, members share their experiences and perspectives as well as  provide advice to youth providers and students in the hopes of improving the services offered to high risk youth in the Boston area.

Lancet study reports that HIV treatment can “normalize” CD4 counts

A recent study in the “The Lancet” medical journal found that some HIV+ people who receive antiretroviral therapy can achieve normal CD4 T-cell counts. Although this is an encouraging result, I have some concerns about the way it was reported in the popular press, particularly by the Reuters news service. 

Before I critique the Reuters article, let me give you a brief summary of the study’s main findings:

1) When HIV+ persons go on antiretroviral therapy (ART) and maintain undetectable HIV levels for long periods of time, their CD4 T cell counts often rise significantly - sometimes to the normal range. 
2)  The increase in CD4 cells can occur even in persons who start treatment with low CD4 counts.
3)  However, to protect the immune system and get the maximum CD4 boost, it’s best to start treatment before counts fall to low levels. 

Each of these three main findings has already been reported in many other studies in the years since effective ART  became available over a decade ago. Although it was fine for Reuters to report on this study, the writer should have noted that it merely confirmed the current thinking about HIV. There was nothing particularly surprising or groundbreaking about the results.

It’s also important to emphasize that, if a person with an AIDS diagnosis achieves a high CD4 count on treatment, they must stay on treatment to maintain that high count.  The Reuters article lacked this important information.

My second beef with the Reuter’s article concerns its headline: “HIV patients build normal immune strength in study.” This headline makes a claim that goes far beyond the scope of the Lancet study, and is frankly misleading. Previous research has shown that, if people stop taking their HIV meds, their CD4 counts generally drop quickly toward their lowest-ever level.  For people with an AIDS diagnosis, this means that, off treatment, their CD4 count may rapidly fall to point where they are at risk for serious illness.

This fact indicates that, even when a person’s CD4 count returns to a normal level, there is residual damage to the immune system that isn’t adequately reflected in their CD4 count.  So there’s NOT sufficient justification for the Reuters headline that HIV patients can “build normal immune strength” through long-term antiretroviral treatment. 

At present, starting effective ART before HIV infection has progressed to AIDS is the best way to protect a person’s immune system.  Ongoing research into therapies that actively boost immune function - likely used in combination with ART - may someday lead to a more complete immune recovery in people living with HIV.