June 29, 2011
Quick Facts About
In TheBody.com's HIV/AIDS Organization Spotlight series, we focus on some of the true unsung heroes of the HIV community: the organizations that support and provide services for individuals living with, or at risk for, HIV. We profile some of the best in the U.S. and learn how they got started, what challenges they face and what's in store for them in the future.
This week, we turn our sights on Boston, Mass. According to the Massachusetts Department of Health, 30,537 state residents were living with HIV infection at the end of 2009. Even as the number of new HIV diagnoses has fallen dramatically, the number of people living with HIV/AIDS in Massachusetts has increased 42 percent from 1998 to 2008. Meanwhile, support and funding for HIV/AIDS organizations has not remotely matched this increase. Despite this budget-tightening, AIDS Action Committee of Massachusetts (AAC) continues to serve those infected and affected by HIV every day.
TheBody.com recently interviewed Rebecca Haag, the president and chief executive of AAC.
What was AAC's original mission, and how has it changed over time?
The original mission of AIDS Action Committee was simply to provide support for people with AIDS, many of whom were dying. Those early days -- AIDS Action Committee was founded in 1983 -- were chaotic and frightening. Our mission has naturally changed over the years. Today, we are focused on stopping the epidemic and related health inequities by eliminating new infections; maximizing healthier outcomes of those infected and at risk; and attacking the root causes of HIV/AIDS.
What services do you currently offer?
Our work falls into three areas: client services, policy advocacy and public education. In terms of services, we offer HIV counseling and testing, needle exchange, mental health counseling, peer support, transportation and housing assistance, case management and client advocacy, legal services, and check in (through which volunteers connect with clients to keep them in care).
We also offer programs tailored especially for those disproportionately impacted by HIV: transgender women (through TransCEND, a community-based HIV prevention and health education project by and for transgender women), men who have sex with men (through the MALE Center, a health and wellness program for gay and bisexual men), young people (though Youth on Fire, a drop-in center for homeless and street-involved youth), women (through Project LEAP Peer Leadership, empowerment for women affected by HIV/AIDS), and older people (through PALS, a.k.a. Positive Aging, Lasting Strength).
We also advocate for state- and federally funded HIV policy that works. In order to end the epidemic, HIV prevention and care policies must be evidence-based, and the programs produced by these policies must be publicly and privately supported to be successful. Our related programs in this arena include the HIV Health & Policy Institute, which connects research, community input and political advocacy to confront the epidemic; and the National Health Behavioral Surveillance, a U.S. Centers for Disease Control and Prevention (CDC) led study of behaviors that put people at high risk for poor health.
Public education remains critical, and we provide multiple channels for people to connect to factual, timely, and relevant information about HIV/AIDS and related topics: HIV/STD and Hepatitis Hotlines, including STD411.org and MariaTalks.com; HIV Health Library; AIDS Walk & 5K Run Boston (the largest community awareness and fundraising event for HIV/AIDS in New England); social media; and the Bayard Rustin Community Breakfast (an annual call-to-action event for lesbian, gay, bisexual and transgender communities of color in Boston).
What is the biggest challenge that AAC faces?
Complacency and ignorance. We are 30 years into this epidemic. With the amazing advances that have been made in treatment and care, HIV/AIDS is largely seen as a manageable, chronic illness on par with diabetes and cardiovascular disease. Of course, that's not the case. It's a long-term, chronic and complicated disease that often co-presents with hepatitis C infection, poorly controlled mental health disorders, social/cultural isolation and substance abuse.
Meanwhile, sexuality education of our young people is inconsistent at best. The most recent HIV/AIDS Surveillance Report from the CDC finds that more than half (53.4 percent) of all newly reported HIV/AIDS cases occurred among persons in their 20s (29 percent) or 30s (24.4 percent). An astounding 5.2 percent of cases occurred among people under age 20, with the vast majority of those in the 15-to-19 age group.
Any challenges specific to being in Boston, or Massachusetts in general?
In some ways, we are victims of our success. Massachusetts is a national leader in reducing new HIV infection diagnoses. From 1998 to 2008, the state reduced new HIV diagnoses by 59 percent. This means a $1.6 billion in savings in health care costs to the commonwealth. Yet, the state has cut its HIV/AIDS line item by more than $2 million the last two years; the budget just passed by our state senate proposes another $2 million-plus cut. If we look back 10 years, we see that the state has reduced its investment in HIV/AIDS prevention, education and outreach by more than 25 percent even as the number of people living with HIV over the same period has increased 42 percent.
What, for you, is the most rewarding aspect of working at an organization such as yours?
My work is largely focused on the big-picture concerns of running a large social services and public policy advocacy agency -- and, of course, in working with the board in developing a strategic vision and direction for our work. But I get energized when I hear the stories from our clients about how we have helped them through crisis; how they are now living in stable housing; or how they have managed to become clean and sober and are now living healthier lives.
I literally watch some folks who come into our offices broken by the system and a year later are healthy and self-confident. Many are now helping others who are newly diagnosed and trying to navigate the health care system while getting their lives in order. We are truly making a positive difference in people's lives, and there's no better work than that.
What is one thing people probably don't know about AAC that they should?
We provide services to one in six people in Massachusetts living with a diagnosis of HIV. We make a real, tangible difference in the lives of thousands of people in Massachusetts.
What direction is the organization moving toward? Where do you see AAC three years from now?
We want to see a transformation of the health care delivery system so that a person doesn't need to be HIV positive in order to be eligible for our services. We want to be able to intervene and keep someone who is HIV negative, but vulnerable to infection, from contracting HIV in the first place.
We know that, by reducing new HIV diagnoses by 59 percent over the last decade in Massachusetts, we have saved lives, reduced human suffering and saved the state's health care system more than $1.6 billion in health care costs. We also want to see much more highly coordinated and integrated care for those living with HIV/AIDS. Care is prevention.
This transcript has been lightly edited for clarity.
Warren Tong is the research editor for TheBody.com and TheBodyPRO.com.
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