'We're Going to Be in Trouble': AIDS Groups Plan for Funding Cuts

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For 30 years now, AIDS service organizations have played the role of advisor, caregiver, and friend, but they need to consolidate -- or die

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Thanks to effective treatment, many HIV-positive men and women today can live a healthy, normal life. But it all comes down to their being able to access medical care and adhere to a daily regimen of pill-taking, regular blood work, and at least quarterly doctor visits. Not everyone has the kind of organized, privately insured life it takes to manage such a regimen without assistance.

That's where AIDS service organizations have played the role of caregiver, advisor, advocate, and friend for their clients. For 30 years, these community-based agencies, usually started by volunteers, have worked in towns and cities throughout the country to provide or keep clients plugged into the medical and social services they need to live independently and well.

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Whether offering free meals, transportation to medical appointments, or support groups for the newly diagnosed, AIDS groups have captured the hearts of many communities with their passion and high-quality services, lovingly offered.

They have proved the cost-effectiveness of home-based care and support services for people living with chronic illness, a model that is ready to be applied to those with other chronic conditions, including diabetes and hypertension, even the frail elderly.

But the groups' role is uncertain going forward as the federal government, the biggest funder of HIV services, is now defining HIV care and prevention in narrow medical terms.

How and where to provide the "wraparound" services the AIDS groups have perfected is the question tying hundreds of organizations, and their government funders, in knots.

THE CARE ACT'S DUBIOUS PROSPECTS

Since its 1990 passage, the Ryan White CARE (Comprehensive AIDS Resource Emergency) Act has been the federal government's third -- after Medicaid and Medicare -- largest source of funding for AIDS care and support.

President Obama has requested $2.4 billion to fund the CARE Act in fiscal 2012. The government estimates that 500,000 of the 1.2 million believed to be living with HIV in this country receive some type of service paid for by Ryan White.

It is also the main source of funding for most AIDS service organizations.

But as the CARE Act's 2012 expiration draws near, it's uncertain whether Congress will reauthorize the nation's only disease-specific act for a fifth time.

Lower-income HIV clients already are being shifted from Ryan White-funded programs into Medicaid programs as the Patient Protection and Affordable Care Act (ACA) focuses on integrated services, prevention, and wellness. The year-old National HIV/AIDS Strategy's emphasis on efficiency and measurable outcomes also means big changes are afoot for organizations that don't provide direct medical services.

Laura Cheever, M.D., deputy associate administrator in the Health Resources and Services Administration's HIV/AIDS Bureau, which oversees CARE Act programs, told me the Ryan White program was always intended to fill gaps that private or public insurance programs don't fill.

She pointed out that gaps will remain in the Medicaid programs, and local need assessments will be used to determine how to fill them. She said AIDS service organizations "have to look at their own business model and see where they can partner and connect," adding, "We are not going to tell them how they need to evolve."

RETOOLING FOR THE FUTURE

Clearly it's up to the organizations themselves to recognize and seize the new opportunities within the restructured medical-centered paradigm.

One such opportunity will be to partner with Medicaid and Medicaid Managed Care organizations to provide non-emergency transportation and other wraparound services.

Barbara Edwards, director of the Disabled and Elderly Health Programs Group within the Center for Medicaid and CHIPS (CMCS), part of the federal Centers for Medicare and Medicaid Services, said the types of support services AIDS service organizations provide could be funded by Medicaid.

She also suggested that these alliances could help replace income that would be lost if the CARE Act is cut or ended. "These new contracts would open additional revenue streams for the organizations in lieu of solely relying upon donations or Ryan White funding," said Edwards.

Another traditional role AIDS-focused groups have played is in providing HIV prevention programs. From billboard campaigns to one-on-one peer counseling, the groups have the widest reach in their communities because they also have the deepest roots.

Janet Cleveland, deputy director for prevention programs at the Centers for Disease Control and Prevention's Division of HIV/AIDS Prevention, said, "We see CBOs (community-based organizations) and ASOs (AIDS service organizations) continuing to have an essential role in terms of prevention in this country."

But even HIV prevention is being redefined in medical terms, focusing on ways to keep HIV-positive clients on their meds and thereby less infectious. Cleveland called this "high-impact prevention," and said there is "more of a focus on working with prevention for positives."

So merely offering prevention services could require partnering with a medical facility.

PARTNER -- OR FOLD

From his vantage point as president and CEO of AIDS United, a lobbying group in Washington representing more than 400 community-based AIDS organizations, Mark Ishaug told me, "There is no future for the AIDS stand-alone, AIDS 'silo service sector' as we once knew it."

Then he added, "Part of me feels like a real Janus face: Do we need AIDS-exceptional services? Mostly I think not. But do we need services that provide exceptionally smart HIV care? Yes. It's not a contradiction."

Ishaug's predecessor at AIDS United, Rebecca Haag, is director of Boston's AIDS Action Committee, the largest and oldest AIDS service organization in Massachusetts. She has already overseen the merger of her organization with two smaller community groups, and she sees more mergers and consolidations ahead.

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The author of Victory Deferred, John-Manuel Andriote has specialized in HIV/AIDS reporting since 1986. His research materials, correspondence, and recorded interviews are part of a special collection curated by the Smithsonian.

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