Burlington – Vermont CARES Director Kendall Farrell announced in mid-September that the agency would forego the option of applying for close to $100,000 in funding from the federal Centers for Disease Control (CDC) administered through the Vermont Department of Health (VDH). The figure represents about 12.5 percent of the agency's total budget. Farrell said the premier AIDS/HIV agency in Vermont is turning down its chance of funding because of increased and intrusive reporting requirements and the need to submit prevention materials for state approval.
      "We cannot take this money and not compromise our principles," Farrell said in a phone interview. "Based on our 20 years of experience in delivering HIV/AIDS services, we know that these additional requirements will increase the barriers to getting tested and receiving prevention information."
      The decision involved both board members and staff in what Farrell characterized as a "thoughtful process." Among the 11 board members, she said, are "a number who are living with the virus," and thus have a personal knowledge of the challenges facing people living with HIV/AIDS.
      Farrell said Vermont CARES is "looking to the community to step up to the plate" in increasing donations to replace the VDH/CDC funding the agency has declined to apply for. A mailing to donors was due out at press time, and the agency's annual charity walk took place the weekend after the decision was announced via a press release and a full-page ad in the news and entertainment weekly Seven Days.
      While the prevention funding was not a sure thing, Farrell said success was likely, given Vermont CARES' long history and extensive experience in delivering services to people at risk of contracting HIV/AIDS, including men who have sex with men (MSM), intravenous drug users of any gender (IDU), and people who engage in high-risk sexual activities with multiple
partners.
     However, three other HIV prevention programs are still in the running for what was estimated to be two funding "slots": the AIDS Project of Southern Vermont in Brattleboro; AIDS Community Resource Network (ACoRN), in Lebanon, NH, and serving a bi-state clientele; and R.U.1.2? Queer Community Center in Burlington.
      Of particular concern were new requirements to use abstinence education materials for prevention and to say that condoms are less than 100 percent effective at preventing the transmission of HIV. "To our knowledge, condoms are 99 percent effective when used correctly every time. We want to be able to encourage people to use condoms," Farrell said.
     Among the agency's other concerns over the new mandates were intrusive data gathering, disclosure of potentially identifying information, and the imposition of programs normed on urban populations.

Passing Through

     Kurt Kleier, the recently hired Vermont Department of Health AIDS Section Chief, says the state agency shares many of Vermont CARES' concerns and hasn’t been shy about passing them along to the CDC. "The first thing I did when I was hired was to send a letter to the CDC expressing our concern that one of our major service providers was not applying," Kleier said. "Kendall [Farrell] and I are on the same page, and she understands that her struggle is not with us, that these are CDC requirements," essentially a pass-through.
      Kleier, who comes to VDH from Missouri by way of Alaska, said he had experience in "what is called 'suppressing data identification,'" that is, in a rural population, finding ways to prevent someone from figuring out who a given person is through information on age, race, gender, and so on. "I can knowledgably go to bat for those concerns," he said.
     One of the issues, he added, is that the grants for 2005 are the beginning of a three-year grant cycle. If an agency opts out of the process now, it can't change its mind until applications are due for the 2008 grants.
Kleier disputed claims that urban programs won't work in rural states, citing his own experience with an AIDS service organization in Anchorage (population 260,000) using programs found effective in Los Angeles (population just under 4 million). "We're not requiring grantees to use solely urban-based programs," he maintained. "If they've got something that works and is effective..."
At issue, Kleier said, is a new "evaluation management program" that smaller organizations find "cumbersome to use." The new system is due to come online in the middle of the grant year - in mid-2005. It's part of "a general push for accountability," and also affects substance abuse programs, and others.
      Asked about the mandates to teach abstinence as a primary prevention method and to portray condoms as less than effective, Kleier said, "We share Kendall's concern over the effectiveness of abstinence prevention materials. We've weighed in on that at every chance we've had. We're very concerned about the condoms issue. We are convinced that they can be effective at preventing not just HIV/AIDS, but a whole list of sexually transmitted diseases."

Reserving Options

       Susan Bell, executive director of the AIDS Project of Southern Vermont, says that although her agency "is taking a different tack from Vermont CARES, there is not one point on which we disagree with Vermont CARES' positions."
      The AIDS Project of Southern Vermont is applying for funds to address three at-risk populations: MSM, at-risk women identified as heterosexual, and IDU. "In the past, our prevention activities for these three groups totaled $100,000," Bell said. "One of the tensions this year is that we have no idea whether we will end up with more money or less money.
      "Vermont CARES has chosen to opt out of the process early on, while we're reserving that option" for later consideration via a routinely included cancellation provision in the agency's contracts, Bell explained.
     Bell noted that programs in other rural states are also objecting to the new data-gathering provisions as well as to "being asked to be a research arm of the CDC. [The CDC is saying] 'Here are programs that have been shown to work (in large urban areas), take them and use them in your rural areas.' If we were able to run them as [separate] pilots, that would not be such a bad thing."
     Bell added, "It feels like we're being told to do things differently, with unfamiliar programs, using less funding, knowing that meeting these higher standards will cost more. The question is how we negotiate that."
      She had characterized the new CDC mandates in an April article in the Brattleboro Reformer as targeting people already infected, attempting to control and track their behavior, instead of focusing attention and resources on dismantling the social inequities that put people at risk for infection.
      R.U.1.2? Queer Community Center Executive Director Christopher Kaufman agreed with Bell that he shares CARES' concerns, and supports the agency's decision to withdraw from the process, but he will apply for the grant under the mandates. Asked whether R.U.1.2? would benefit by having one less competitor for the funding, he grimaced. "We're set up to compete, and that's too bad. We're different agencies providing different services, sharing the same values. We should be collaborating."
      The biggest difference he noted is that CARES is a large agency able to take a calculated risk that fundraising would make up the difference, while R.U.1.2?'s MSM HIV-prevention program is small, giving R.U.1.2? less flexibility. This year's program - primarily Internet outreach through selected chatrooms, along with a website and a recently instituted email 'prevention digest' - was funded to the tune of $40,000. If R.U.1.2? gets one of the two MSM grants, it will more than double the Community Center's HIV program budget. The grant deadline was September 24. Applicants expect they'll be notified in late November whether they've been awarded funding - and how much.
     Kaufman said his understanding about the new mandates is that the requirement for 'unique identifiers' for clients seeking prevention services will not be imposed until 2006.
     ACoRN executive director Tom Mock applauded the principled stand taken by Vermont CARES, adding that ACoRN shares the other agencies' concerns. "But I have a fiscal responsibility to the agency and a service responsibility to the community to continue our services," he explained. Besides, he said, the "strings attached to this money may never materialize."
     Mock suggested that the data gathering provisions, known as "PEMS," are "CDC policy and run directly into the face of Vermont legislated law. It would not be responsible of me to not seek this funding based on what might happen. We're banking on the possibility that it will all just go away."
     ACoRN serves Orange and Windsor Counties in Vermont with an office in Lebanon, NH. Because it also serves people in Grafton and Sullivan Counties in New Hampshire, Mock added, "What we're really concerned about is New Hampshire, where the Health Department has made it very clear they want not just 'unique identifiers,' but name reporting. I asked them if their goal was to shut down our services. They said, oh, no, that wouldn't happen, after a while it would 'normalize' and people would come back again."
      That seems an even worse gamble with people's lives than the one being played out among the CDC, the Vermont Department of Health, and Vermont CARES.