Checking in with Rebecca Haag, President & CEO of AIDS Action Committee.

Every Dec. 1 marks World AIDS Day. Held annually since 1988, it’s an opportunity to take stock of an epidemic that has taken more than 600,000 lives in the United States. Today, there are an estimated 1.1 million people in the US living with HIV or AIDS. An estimated 23,000 to 25,000 of them live in Massachusetts and of those, approximately 5,000 to 10,000 do not know they are HIV positive. 

Gay and bisexual men, particularly young, gay Black men, continue to be hardest hit by the epidemic. Meanwhile, 28 percent of transgender women are estimated to be HIV positive by the U.S. Centers for Disease Control. 

Bay Windows checked in on the state of the epidemic with Rebecca Haag, President & CEO of AIDS Action Committee, New England’s largest AIDS service organization.

Bay Windows: What’s the status of the AIDS epidemic here in Massachusetts versus the rest of the country?

Rebecca Haag: The good news in this, the 30th year of AIDS, is that we are doing it right in Massachusetts. We have a 59% reduction in the number of new infections since 2002, and that means not only saving lives but $1.6 billion in health care costs. But we still have challenges. There are populations and communities who we haven’t sufficiently reached and we are working hard to do that. I’m optimistic, though. Massachusetts is leading the way to bring epidemic under control.

BW: What’s it going to take for the rest of the country to catch up to Massachusetts?

RH: I see three critical points that are important to success. First, the provision of medical care to all people who live in Massachusetts. Fifteen years ago AIDS Action advocated that Medicaid cover HIV treatments, not just treatment for full-blown AIDS. That still hasn’t happened in many other states, which means that if you’re poor and can’t afford HIV treatment you have to wait until you very ill to get treatment. That is a huge human toll and costly to the system. And universal health care has also been significant in delivering early treatment to those infected.

Next is the robust system of community support we all built in Massachusetts. You can’t just deliver HIV treatment to someone experiencing homelessness, domestic violence, mental health or substance abuse issues. Support has to be available to help individuals stay on treatment. 

We do this by using evidence-based behavioral interventions. The needle exchange program and pharmacy access to syringes has resulted in a huge drop in new HIV infections in intravenous drug users. We do outreach to young gay men through MALE Center in the South End. Programs are available at JRI, Fenway (Community Health), and MAC.

At AAC, we use the "drop in center" model. When you come to AIDS Action in Lynn, Cambridge or Jamaica Plain you’ll find access to food and housing vouchers. We collaborate with Community Servings (hot meal delivery) and legal groups. We are here for you. 

The only way to stop the epidemic is to reach people at risk before they become infected. For example, we might see a young gay man at the MALE Center who is homeless, selling sex to support himself, who is HIV negative. Traditionally he may not get services because he is negative. We are changing that model by working to keep him negative and offer services to address his homelessness or mental health issues. 

All of these efforts not only help to stem the epidemic but also save money.

BW: The CDC says that gay men are more than 44 times more likely to become HIV positive than the general population and nearly 30 percent of all transgender women are HIV positive. Why are gay and bisexual men and transgender women so much more vulnerable to HIV infection?

RH: HIV is a vortex of all social justice issues in our country. Marginalized populations are more at risk. The gay community in Massachusetts feels secure due to same-sex marriage rights. But we have to remember that young gay people don’t enjoy the privilege many of us have. Young adults from rural populations come to the city, many of them without jobs or money.

Alarmingly, for black women aged 35-44, AIDS is the third-leading cause of death in the US and being in a "committed" relationship is the number one risk factor.

And the issues faced by trans women, who are rejected by the greater part of society, puts them at risk.

Getting to the next level will be difficult.

BW: What are three things we could do to reduce the stigma associated with HIV infection?

RH: I would urge those living with HIV to be more vocal about their status, come out of the closet. I understand why some who may be living secure, healthy lives don’t want people to know (about their HIV status) but we need more HIV-positive people to tell their stories.

We need better training for medical professionals. Those of us who came of age while the epidemic was taking our friends know a lot about HIV. But this younger generation may have fears that are not based on facts. We need to go back to the basics. The lack of good sex education in schools also contributes to the misinformation.

BW: If someone wanted to make a difference in the epidemic today, what three things could they do? 

RH: Everyone who is sexually active should ask their doctor for HIV test. We need to make getting tested a routine and accepted practice.

None of us knows the complete sexual history of our sexual partners. Getting tested is especially important if you have more than one partner.

Our elected officials need to get tested and lead the way. President and Mrs. Obama were tested and that’s what we need to see more of.

We have to start talking about Hepatitis C. World AIDS Day is a good time to look at this silent epidemic. About 4 million people are living with Hepatitis C and 25 percent do not know their status. In Massachusetts, 100,000 people are estimated to be infected and there are and 7,000 to 10,000 new infections every year. Those of us involved in HIV work have to also look at some of the other common blood borne and sexual transmitted diseases. We need to put an end to Hepatitis C and start doing what we’ve done to HIV. The treatments are expensive and difficult and a HIV/Hep. C dual infection is a fatal combination. The people we are losing are co-infected. 

To use a football analogy -- we are in the red zone, on the 15-yard line. It’s difficult to get into the end zone so we have to keep up the pressure.

And remember those living with AIDS. If you know someone who is HIV positive, give them a hug or call to let them know you are thinking about them. Many folks have been driven into closet. We have to let them know we are still fighting.

For more information about the AIDS Action Committee of Massachusetts, please visit aac.org.