Bay Windows - January 1, 2004
Ethan Jacobs, ejacobs@baywindows.com.

"What surprises me is that we are still here," said Kessler. "When we started meeting to form the Aids Action Committee everybody was in general agreement that we would probably need to build some sort of a committee or, not necessarily institution, but a small task force, and we would be around for maybe two or three years."

Yet just as the AIDS virus has survived, AAC has persevered. When it first opened its doors AAC provided services to about a dozen clients with HIV/AIDS; over the years the number of clients has grown to more than 2,500. Since the epidemic began nearly half of the people in the Bay State who have been diagnosed with AIDS have made use of AAC's services. The organization also continues its education and advocacy work around HIV/AIDS, a difficult task during the current state budget crisis. In the past two years the AIDS line item in the state's budget has decreased by 37 percent.

Kessler and AAC's other founders could not have imagined such challenges back in late 1982 and early 1983, around the time when Kessler says Massachusetts health care providers started seeing patients with symptoms indicating that AIDS had arrived in the Bay State. In late 1982 Kessler was on the board of Fenway Community Health, which helped the center organize "rap groups" to give the gay community a space to discuss the emerging epidemic. Kessler said that some participants talked of forming a Boston equivalent to New York's Gay Men's Health Crisis, and the Fenway board assigned Kessler and a Brookline chiropractor named Jonathan Stein to head up the effort.

There was one catch. Already strapped for funds to carry out its own work, Fenway had no way of funding AAC, although it did give Kessler and company free use of its basement. The fledgling group set its sights on opening an AIDS hotline, and Kessler says the phone company told them it would cost at least $5000 to set up the phone lines.

Kessler decided that a fundraiser was in order. He partnered with the Colonial Theatre, buying a block of seats to "La Cage Aux Folles," which Kessler hoped would attract the gay community. The seats sold out, and at the end of the evening AAC had raised its first $7000, enough to install phones and still leave the organization with much-needed cash.

AAC began publicizing its mission and was overwhelmed by the number of people looking to volunteer, Kessler recalled. Volunteers visited AIDS patients in their homes and in the hospitals, offering support and taking care of household tasks that patients were too sick to perform.

Kessler was amazed by the willingness of the volunteers to put themselves at risk for contracting a fatal disease. In the early days of the epidemic, before the medical community fully understood the link between AIDS and the HIV virus, the volunteers stunned hospital workers by caring for patients without wearing masks, gloves or other protective barriers.

"We decided early on that the only precaution that we would take would be lots of hand washing, and masks if the patient had a violent cough," said Kessler. "But the people in the hospitals were still wearing everything from masks to gloves to gowns depending on the severity of the cases, [and] they were definitely garbed in a different way than the volunteers were. And they would express concern and say, 'Gee, are you really comfortable dressed the way you are?' And for the most part our volunteers were gutsy and did it."

The media had dubbed AIDS a "gay" disease, but Kessler said AAC's first wave of clients was sufficiently diverse that the organization realized the disease was more widespread. In addition to gay men, AAC provided services to men and women in the Haitian community, male and female IV drug users, and hemophiliacs. By the end of its first year Kessler said AAC's 100 clients were mostly gay men, though many clients did not fit the prevailing stereotype of the typical AIDS victim.

The AIDS hotline and the volunteer outreach work to AIDS patients were only two of the "firsts" in AAC's early years. In 1984 the organization opened its first housing for people with AIDS, and in 1986 the first AIDS Walk raised almost $300,000 for AAC.

In 1987 AAC hit a less welcome milestone: Its first major controversy. By that point AAC had found that brochures were the most effective form of education about AIDS and HIV transmission. AAC began to design brochures specifically targeted to the gay male community, using sexually explicit images and language. To protect people's anonymity the organization mailed copies of the brochures in unmarked envelopes to anyone who requested them.

One of those requests came from a conservative physician from Needham who objected to the brochures. After receiving his packet from AAC the physician distributed the brochures to members of the state legislature, and some legislators began calling for AAC to lose its $280,000 in state funding.

Kessler said that when he and other representatives of AAC traveled to the Statehouse to address the uproar over the pamphlets, the media turned out in full force. AAC explained to lawmakers that it had used no state funds to produce the brochures, but some still demanded that the group's funding be revoked. After the meeting AAC staged an impromptu press conference to make its case.

"We stood up at the podium and I said, 'First of all the state didn't pay for this, and secondly, if they want to take the money away then they should do it because we're not going to change our policy. This is a brochure that was designed for gay men. It's not designed for anybody else but gay men...'" Kessler recalled. Ultimately the legislature agreed that AAC could produce the pamphlets as long as they did not use state funds. "We stuck to our guns, and the governor supported it," said Kessler.

This willingness to challenge the status quo is part of what Kessler sees as AAC's three-pronged approach to AIDS advocacy. One part of that approach is working within official channels, such as AAC's involvement in the Governor's Task Force on AIDS or its work with legislators to draft AIDS-related legislation. The second part involves working with colleagues in the medical and other AIDS-related professions and convincing them to speak out on HIV/AIDS issues. The third approach is to work outside official channels, protesting and using direct action to advocate for the cause.

Kessler said that while AAC makes limited use of direct action, members of Act Up, active in Boston until the mid-1990s, carried out much of that work.

"The difference is Act Up isn't around anymore, and we miss them, frankly. We were never close partners, but I think there was a mutual respect. Together I think we were pretty effective," said Kessler.

Act Up may have been the most visible force behind AIDS-related protests, but AAC also has a history of taking to the streets to get its message across. In 1987 a group of AIDS activists, including Kessler, staged a peaceful protest in front of the White House, criticizing President Ronald Reagan for refusing to confront the AIDS epidemic. Kessler was among the activists arrested during the protest. AAC members also took part in a 1991 protest of President George Bush's AIDS policies at the Bush family compound in Kennebunkport, Maine.

One of the more frustrating challenges the organization has faced over the years has been advocating for needle exchange programs, said Kessler. AAC began pushing for needle exchange in 1987, and in 1993 Governor William Weld signed into law a pilot program. The state has the option of establishing ten needle exchange sites; as of now only Boston, Cambridge, Northampton, and Provincetown have set up sites.

City governments have discretion about whether to permit needle exchange programs, and Kessler said cities outside of Greater Boston without such programs have seen a rise in HIV-infected addicts.

"If you look at places like Lynn, Holyoke, Springfield, Worcester, Lawrence, New Bedford, and Fall River ... the numbers of addicts and their sexual partners with AIDS is the majority. It's not gay men, it's not hemophiliacs. It's heroin users and the people who have sex with them, and the common connector is the lack of clean needles and a terrific shortage of treatment slots," said Kessler. He said in areas around Seattle and New Orleans, which had similar rates of HIV-infection to Massachusetts among addicts in the late 1980s, needle exchange programs have kept infection levels far below those of the Bay State.

Rebecca Haig, AAC's current executive director, said that after years of unsuccessfully lobbying for needle exchange programs AAC is now focussed on getting through the legislature a pharmacy access bill that would allow clean needles to be sold in pharmacies without prescription. She said Mayor Thomas Menino has announced his support for the measure, and the bill will come up for a hearing at the end of January.

Another area of struggle for AAC centered around the long-term healthcare needs of HIV-positive people, many of whom are responding well to combination drug therapies.

In 2001 activist Belynda Dunn, who founded AAC's outreach and education program to black churches, was denied an evaluation for liver transplant surgery from her HMO because she was HIV-positive. In response AAC and Gay and Lesbian Advocates and Defenders (GLAD) sued, and Menino procured funds for Dunn's procedure. The next year Dunn died of non-HIV-related complications during surgery. GLAD won a case in 2001 representing an AAC client that forced Medicaid to pay for transplant operations for HIV-positive patients.

In April 2002 AAC went through a major transition as Kessler stepped down as executive director, transitioning to his current role as founding director. His replacement, Michael Duffy, oversaw a number of transitions at the organization, including AAC's move from the South End to downtown Boston, but his tenure was marked by allegedly difficult relations with AAC staff, who filed a number of grievances with the board of AAC. Duffy resigned from his post April 2003, and Haag, a longtime board member, was appointed the new executive director.

Haag said that AAC's current priorities are pushing for over-the-counter sale of needles and collaborating with other local AIDS organizations to survive in the midst of the state budget crisis. And just as in the early days, AAC is redoubling its efforts to raise awareness about safer sex, particularly among gay male communities where HIV infection is on the rise.

"Our priority is prevention," said Haag.

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