AIDS Action Committee’s Blog

Volunteers contribute over 1,100 hours every month at AIDS Action to help stop the epidemic. From each volunteer application, an individual of conviction and compassion quickly shines through the words.

“I can’t bear the idea of people out there going through [the experience of living with HIV] alone.”
-- now a Check-In volunteer, providing long term, weekly support to people living with HIV over the phone

“Being gay makes me want to reach out to people in my community and help all that I can.”
— now an Outreach volunteer, talking one-on-one with people in the gay community about safer sex

“I’ve always felt that AIDS played a part in my life because my uncle, who died before I was born, was an AIDS activist.”
— now a Boomerangs volunteer, raising money for AIDS Action programs

“I think this needs to be a disease that is on everyone’s mind.”
— now a Hotline volunteer, helping field the over 1,000 calls received each month

I believe that when people understand this epidemic, they are moved to action. Every day I see victories in the fight against complacency and silence. When someone calls the Hotline seeking counsel, the voice on the line will be a volunteer. When a person living with HIV needs nutritious groceries, they will come from a volunteer’s hands.

Each person of conscience can contribute. Just as important, each person must act as an ambassador to their community, broadening this fight, and moving others to transform their compassion into action.

We offer many support groups at AIDS Action Committee. From the members of these groups we have gathered that their health concerns are moving beyond those of just T cell counts and viral loads. This is not to say that HIV is not foremost in my mind when I am speaking with a client. This disease is still killing people every day and it will continue to do so until we stop this epidemic

However, many of our clients have been successfully managing their HIV and are now incurring other medical issues. Unfortunately it seems that HIV docs are not responding in an appropriate manner. Many clients at AIDS Action have expressed frustration. Many feel like numbers rather than patients. I realize how difficult it was for docs in the first 15 years of this epidemic. However with increasingly safer, efficacious drugs now available it is time for doctors to stop treating HIV solely and to start treating patients as human beings again. I think it is time for HIV docs to be HIV docs and let Primary Care docs take care of the rest.

I owe my life to HIV docs. Throughout the years, through their dedication I have survived. Now I am living and aging. I am no longer consumed with HIV and all its baggage. Until this is over my primary purpose will always be to end this epidemic. For now I want to live as normal as possible. Routinely I will see my HIV doc four times a year. The rest of the time I will live.

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.

Politics versus Public Health–an ongoing theme in the AIDS epidemic. And, when I listened to the courageous, groundbreaking speech Bob Hattoy gave at the Democratic National Convention in 1992 I realized how little has changed; the speech could have been given yesterday. As in 1992 we have a President named Bush who is terrified of the word “condom” and an administration that sees gay men as an enemy—not as part of the American family.

Hattoy said he could “face dying because of a disease but not because of politics”. Guess what? There was an 8% increase in new cases of HIV in gay men between 2003 and 2004. Although the CDC expresses bewilderment at the increase, the war on condoms and the “official” policy that the only acceptable sexual activity is that which occurs in the context of a monogamous marriage come to mind as possible explanations. Previously successful prevention efforts are falling by the wayside because of this administration’s pandering to the religious right. Politics seem to be winning.
Rest in peace Bob, you will be missed.

This Saturday, March 10th is the Second Annual National Women and Girls HIV/AIDS Awareness Day. Last year was the first year set aside as a national observation day to raise awareness of the increasing impact of HIV/AIDS on the lives of women and girls.

To that end, this year’s theme is “Taking Action to Save Our Lives”

Is it about time? – Well, today:

• 48% of all adults living with HIV/AIDS are women.
• 31% of people living in MA recently diagnosed with HIV infection are women.
• 29% of people living with HIV/AIDS in Massachusetts are women.
• 50% of teen girls in 2003 accounted for new HIV infections among those ages 13-19.
• HIV is the leading cause of death for African American women aged 25-34 years.
• Across the country, HIV infection is the 5th leading cause of death among all women aged 35-44 years.
• And other than HIV, the only diseases causing more deaths of women are cancer and heart disease.

IS IT ABOUT TIME?
“taking action to save lives”? Why not two decades ago? That may have made a big difference today if treatment options and services for women were addressed earlier on. The call to raise awareness now? – Is that because people are finally getting it that women are getting “it”. Or maybe, because so many women are dying – hence the call to take action to “save lives”. The real bottom line is that women historically get overlooked. Whatever happened to “save the women and children first”? I guess not when it comes to HIV infection.

One thought, is that 78% of HIV positive women have contracted HIV through heterosexual sex or “presumed heterosexual sex” yet, “presumed heterosexual” is not an “identified risk” factor – so many women don’t fit nicely into one of the “high risk” categories (i.e., MSM or IDUs that gets “counted” and more importantly, funded). Maybe because most women don’t have an “identified risk” is why there has been so little, for example, research on what the effect of sex/gender and body weight has on antiretroviral medications or a real effort to develop gender specific programs and resources across the nation for women. Instead, women have to fit into treatment protocols and medication doses determined for men – but this isn’t a new idea. Not that long ago, the largest treatment study for breast cancer was conducted on men only. Did having male subjects for this study delay women’s breast cancer treatment that is now available for women – I’m not sure – but likely.

Women are not an emerging at risk population – they are here and have been HIV positive for decades - the 2007 awareness campaign to “take action and save lives” – well, now in the 26th year – IT IS ABOUT TIME! Don’t you think?

There was some good news last week about promising antiviral drugs that could significantly expand treatment options for people living with HIV. The findings were presented at the 14th annual Conference on Retroviruses and Opportunistic Infections (CROI) in Los Angeles.

Two of the experimental drugs discussed at CROI are from entirely new classes of HIV drugs. New classes of drugs are especially important for HIV-infected persons who are running out of treatment options. Their options may be limited because they are infected with HIV that is highly resistant to many of the currently available drugs. Or they may also have experienced side effects that made some meds intolerable. For these persons, using new classes of drugs may offer the best chance of bringing HIV infection under control. 

One of these new drugs – raltegravir or MK-0518 – is in a drug class called integrase inhibitors. When HIV makes copies of itself, it uses a chemical called integrase to insert (integrate) its genetic material (DNA) into the cell’s control center, called the nucleus. Once HIV’s genetic materials 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.

Another new drug called maraviroc is in a class known as CCR5 blockers. The drugs in this class are designed to stop HIV from binding to a protein called CCR5 on the surface of cells. By disrupting this binding process, the CCR5 blockers can protect cells from being infected with the virus.

Since the studies done to date have shown strong evidence that raltegravir and maraviroc are safe and effective, drug makers have been allowed to offer expanded access programs (EAPs) for both drugs. EAPs make promising experimental drugs available to a limited extent before they are approved by the Food and Drug Administration. 

The March issue of AIDS Action’s Forward Living newsletter has a feature article about EAPs, including more information about raltegravir and maraviroc.

So, Senator Tom Coburn, of bathroom storming lesbians in Southeastern Oklahoma fame, is at it again. This time he’s giving us the choice of pulling $60 million dollars of prevention money out of the fight on HIV/AIDS or gutting the right of informed consent and the availability of pre-test counseling across the country. So, one might ask, how did Senator Coburn get to do this? He insisted on an amendment to the recently enacted Ryan White Treatment “Modernization” Act (quotations mine!) that sets aside $60 million dollars over the life of the Act for “prevention counseling, treatment of newborns exposed to HIV/AIDS, treatment of mothers infected with HIV/AIDS, and costs associated with linking those diagnosed with HIV/AIDS to care and treatment for HIV/AIDS.” These monies are to be taken from the CDC’s HIV Prevention line item. So what’s wrong with that?

This. The money is only available to states that do not provide pre-test counseling and deny informed consent for pregnant women, clients of sexually transmitted disease clinics or clients of substance abuse treatment centers. Or, states can opt to remove the parents from the picture and impose universal newborn HIV testing. States don’t have to do all of this—they merely have to choose which populations to disenfranchise.

But it doesn’t appear that any states currently qualify for the funds—it’s those pesky laws about informed consent and adequate counseling that most states still have that gets in the way. If no states qualify, instead of being made available for other HIV prevention efforts, the funds revert back to the Treasury–60 million dollars less to stop the spread of HIV. So the push is to repeal the laws providing for informed consent and counseling.

This move to deny people the right to informed consent and adequate counseling coincides with the perception that HIV/AIDS is a disease of African-Americans. A recent book notes that legal constraints, such as those protecting the right of informed consent, that were not applied when the disease was believed to affect primarily white men have been “vigorously applied” to African-Americans.

As the populations affected by HIV have gotten darker and poorer, traditional measures such as counseling and informed consent for testing have been challenged. Given its deplorable track record, the African American community is rightfully mistrustful of the medical establishment. But, and this is the crux of the problem, can we really believe that creating a more coercive, punitive care system will get more African Americans to enter care? And why are we allowing that question to be answered by a Senator who tilts at boogeywomen in bathrooms?