New coalition aims to make ending HIV/AIDS epidemic a top priority in Mass.

As HIV/AIDS advocates prepare for a potentially bruising budget cycle they have announced the formation of a new group, the Coalition to End HIV, that aims to put the HIV/AIDS epidemic back on the front page of the state's policy agenda.

The Coalition was initially formed as a result of discussions among advocates who were dissatisfied with Project AIDS Budget Legislative Effort (ABLE), the HIV/AIDS coalition that has long led AIDS lobbying efforts on Beacon Hill. Yet since the Coalition began meeting in September it has formed an active working group comprised of both supporters and critics of Project ABLE. Julie Marston, executive director of Community Research Initiatives (CRI) and one of the Coalition's interim co-chairs along with JRI Health's Douglas Brooks, said the Coalition plans to work with Project ABLE and support its budget work, but it also intends to develop a much broader approach to tackling HIV/AIDS issues in the Bay State.

"We're positioning ourselves to come up with a bold new strategy and to come up with a budget and legislative agenda to support that statewide with as many service providers as we can to make our voices heard. I think that includes supporting other groups [including Project ABLE]," said Marston.

Despite the Coalition's long-term goal to lay out an agenda broader than Project ABLE's budget focus, for the time being the state fiscal crisis has made the budget priority number one. The Coalition is supporting Project ABLE's annual lobby day, scheduled for Jan. 29 at the State House, and calling on the state not to cut any additional funding from the state's HIV/AIDS budget. In October Gov. Deval Patrick cut $1.5 million from the $37.7 million AIDS budget line item as part of a series of about $1 billion in emergency cuts prompted by the economic slump. Patrick has promised another $1 billion in emergency cuts to the current budget, and advocates worry about even more cuts down the line when Patrick unveils his budget proposal for Fiscal Year 2010 at the end of the month.

"Right now the budget really has our attention. And the most important thing we want to get across is supporting lobby day on the twenty-ninth," said Marston.

Jonathan Scott, executive director of Victory Programs and one of the founding members of the Coalition, said it was created last spring as a result of meetings between advocates representing a number of organizations, including Victory Programs, CRI, AIDS Action Committee (AAC), JRI Health, Cambridge Cares About AIDS, AIDS Housing Corporation, and Massachusetts Asian and Pacific Islanders (MAP) for Health. Those meetings followed the January 2008 announcement by AAC that it was relinquishing its seat on the Project ABLE steering committee over dissatisfaction with Project ABLE's efforts to build up the AIDS budget after a loss of nearly $20 million to state AIDS funding following the post-9/11 economic downturn of 2001 ("AIDS Action exits Project ABLE," Jan. 30, 2008).

AAC's departure prompted other HIV/AIDS advocates involved with Project ABLE to speak out publicly about their disappointment with Project ABLE's lobbying approach (See "Advocates disagree on HIV/AIDS lobby strategy," Feb 13, 2008.) Many of those dissatisfied by the state of HIV/AIDS lobbying were involved in the initial meetings that led to the formation of the Coalition to End HIV. Among those involved were Scott, who last February told Bay Windows that Project ABLE's message was no longer resonating on Beacon Hill, and AIDS Housing Corporation Executive Director Joe Carleo and MAP for Health Executive Director Jacob Smith Yang, who said last February that Project ABLE's budget requests were too conservative. Despite their complaints most of the advocates who spoke out remained a part of the Project ABLE coalition.

Last fall the burgeoning Coalition to End HIV hired Jack Regan of the Metis Consulting Group, who in 2007 worked with MassEquality to plan its transition from a coalition of marriage equality organizations to a freestanding advocacy group. Regan has also consulted with HIV/AIDS organizations including AAC and Fenway Community Health. Regan has spent the past several months working with the Coalition members to help determine the Coalition's final structure and map out exactly how it will accomplish its goal of implementing a broad HIV/AIDS strategy. The Coalition has held meetings throughout the fall across the state with both advocates and people living with HIV/AIDS, and it has assembled a working group of about 25 advocates, including several Project ABLE steering committee members, to refine its agenda.

Despite past disagreements among members about Project ABLE's work, the Coalition members ultimately agreed that it would work with Project ABLE and respect its role as the primary lobbying operation on HIV/AIDS budget issues. The Coalition is working with Project ABLE to help bolster its lobbying efforts, but it will also pursue a much broader agenda. Marston said that agenda would include lobbying public officials to create a comprehensive strategy to end the HIV epidemic in Massachusetts, rethinking the delivery model for HIV/AIDS services and encouraging collaboration among HIV/AIDS organizations to reduce overhead costs. It will also work to broaden the coalition of advocates working on HIV/AIDS issues, bringing in advocates working on issues like substance abuse, housing, and healthcare whose clients are impacted by HIV.

"I would couch it that Project ABLE is solely focused on the budget, and while the budget is part of every year it's not the whole year. What we would like to do is make sure we establish a strategy. This isn't working. We need to think harder and smarter and we need to do this as a group," said Marston. "That's not what Project ABLE is designed to do, nor do they have the time to do it."

Gary Daffin, executive director of the Multicultural AIDS Coalition (MAC) and a member of both Project ABLE steering committee and a member of the Coalition's working group, said the initial tensions in the group over Project ABLE have subsided.

"As we move along I think some of the tensions that were there in the beginning worked themselves out. The original folks who pulled out of Project ABLE ... that tension was really kind of a statement from people that we need to be looking at the bigger picture, and everyone has come to the conclusion that of course we do, and we've all got to work together. Consumers have been attending these meetings, and they have been clear that we need to have a big-picture strategy,' said Daffin.

Carleo echoed Daffin's comments, saying most of his own past misgivings about Project ABLE stemmed from his dissatisfaction that there was not a more comprehensive HIV/AIDS strategy.

"I think where we went to with the Coalition was the idea that we wanted to partner with lots of people and voices and work in concert with the budget efforts done by Project ABLE but also with a broader perspective," said Carleo. He said he expects the Coalition to focus on a broad range of issues affecting people with HIV/AIDS including housing and substance abuse.

Both Scott and Marston said one model the Coalition is considering is that adopted by the state's substance abuse and mental health providers. In the budget crunch that followed the 9/11 attacks substance abuse and mental health programs, like HIV/AIDS programs, lost millions of dollars in state funding. Vicker DiGravio, president of the Mental Health and Substance Abuse Corporations of Massachusetts (MHSACM), said those cuts were a wake-up call to the state's substance abuse and mental health advocates, who had never had a comprehensive lobbying or legislative strategy. MHSACM and a group of other organizations including the Boston Public Health Commission, the Massachusetts Housing Shelter Alliance, the Massachusetts Organization for Addiction Recovery, and the Massachusetts Association of Alcoholism and Substance Abuse Counselors Association, formed the Massachusetts Coalition for Addiction Services to form a united front in their lobbying efforts. The Coalition to End HIV recently joined the Massachusetts Coalition for Addiction Services.

"As with any advocacy campaign the more people you can bring to the table, the more leverage you have," said DiGravio. "If you've got a strong coalition and a legislator or a member of the administration is sitting across the table and they see six or seven groups asking for the same thing, the policy maker knows that by making that happen they don't just make one group happy, they make six or seven groups happy."

Advocates were able to convince the legislature to create its Joint Committee on Mental Health and Substance Abuse, and DiGravio said the committee also helped advocates advance their agenda. They were also aided by the increased media attention to the issue of substance abuse prompted by news reports on OxyContin. Digravio credited those factors along with the unified advocacy effort of the Massachusetts Coalition for Addiction Services for helping make major gains in state funding. After 9/11 the budget for the Department of Public Health's Bureau of Substance Abuse Services dropped from $42.1 million to $33.3 million by Fiscal Year 2004. The Massachusetts Coalition for Addiction Services has been able to push for increases bringing the budget up to its current level of $82.4 million, nearly doubling the bureau's budget from before the original cuts.

Unlike substance abuse and mental health advocates, HIV/AIDS organizations already had a lobbying coalition, Project ABLE, long before the post-9/11 cuts. Scott said the failure of HIV/AIDS advocates to make the same gains to their budget as substance abuse and mental health advocates suggests that both their organizing efforts and their message are in need of an overhaul, but he said neither Project ABLE nor other organizations are solely to blame for those failures.

"We clearly have seen in the last six or seven budget cycles that we aren't getting the traction that other advocacy groups have gotten for HIV and AIDS services," said Scott.

"I feel like I can't put the blame on somebody. I have to look at myself and say, how much am I doing? ... We've got to make this a priority and we've got to meet regularly and be much more aggressive and much more organized in how we're projecting our message."

He said he expects the Coalition to make formal decisions about its structure and membership by this March.

Meanwhile the short-term goal is to hold onto the state's HIV/AIDS funding through a difficult budget cycle. The Coalition and Project ABLE, much of whose membership overlaps, have been working in concert in the run-up to the Jan. 29 lobby day. The Coalition sent letters to Patrick, Secretary of Health and Human Services JudyAnn Bigby, and the House and Senate Ways and Means Committee leaders urging the preservation of existing HIV/AIDS funds, and it plans to mobilize its members to turn out for the lobby day.

Daffin said Project ABLE has met with Bigby, and it plans to meet with Patrick's staff in the near future to make the case for HIV/AIDS funding.

Yet despite the cooperation between the two coalitions, they are not completely on the same page in their budget advocacy. Project ABLE is requesting preservation of the current funding, restoration of the $1.5 million cut by Patrick in October, and an added $500,000 in funds for FY2010 to address HIV/AIDS disparities among gay and bisexual men.

"We have a steep decline in real dollars and a growth in services required for people with HIV. So we're focused on not having any cuts in this year's HIV/AIDS line item," said Daffin.

He said the request for new funds for gay and bi men is in response to a state Department of Public Health report released last year focused on gay and bi male health disparities. The request builds on a successful request for $2 million in the current fiscal year to address HIV/AIDS disparities in communities of color.

"I don't know we'll be able to actually get more funding, but we want to keep making the case that we need to keep our eye on the epidemic among gay men and in communities of color, where the epidemic is still growing and where it's still hard to reach people," said Daffin.

The Coalition to End HIV's letters to the Patrick administration do not ask for the restoration of the $1.5 million cut to this year's budget, nor to they ask for the additional $500,000. The letters call on the state not to cut further funds, and they urge the creation of a state strategy to end the epidemic.

"I would say that while we don't want to disagree with anything with Project ABLE we're focused on developing a comprehensive strategy to end HIV, and that's where we're spending our time," said Marston.

Daffin said he is optimistic about the support within both coalitions for the lobby day, and he said Project ABLE hopes to draw several hundred people to the State House.

"It's looking good. [Project ABLE] had a meeting last week, and people are getting the message that we have to get re-energized and we need to be focused on making sure HIV remains a priority of public health in the state. Every agency I know of has been very engaged in this, and there's very unified support for this lobby day," said Daffin.