RYAN WHITE: WHAT’S NEXT?

RYAN WHITE: WHAT’S NEXT? Senate staff convene panels for long-term rethinking; focus groups with ‘regular people’ living with HIV planned Over 100 advocates, activists, lobbyists and people living with HIV/AIDS gathered in a high-ceilinged formal hearing room in the Senate Dirksen Office Building in Washington Tuesday afternoon to begin a three-year conversation on the future of the Ryan White CARE Act and HIV/AIDS health care in America. The first-day summary: a lot of anxiety, a little trepidation, and a handful of PLWHAs and activists pushing for a top-to-bottom rethinking of our current system of care. The session was convened by the Senate Health, Education, Labor and Pensions (HELP) Committee and was chaired by Connie Garner, top health care aide to committee chair Senator Edward Kennedy (D-MA). It included a recap of reauthorization and a discussion of implementation issues – but the meat of the meeting was in the focus on the future. Garner said she’ll be moving forward in the next months with an ambitious agenda for a top-to-bottom rethinking of Ryan White including: • focus groups with “regular people” living with HIV/AIDS to talk about their health care needs and their satisfaction or dissatisfaction with current systems of care; • small working groups on key HIV/AIDS health care issues that will include PLWHAs, advocates and service providers; • large bimonthly meetings for working group reports and collaborative input; • formal oversight hearings on Ryan White, including program administration and service delivery issues. The aim, said Garner, will be to answer one important question: “Is the structure we have right now the right structure for the epidemic of 2007?” Long-term rethinking Garner said she hoped to move beyond “the insanity of this year’s civil war between the cities and the states, the north and the south” towards an updated structure for domestic HIV health care delivery. And she said the review would include examination of Ryan White’s interaction with Medicaid, Medicare, and state initiatives for universal health care. The first step: focus groups with “regular people living with HIV/AIDS – and I don’t mean people with scripts in their pocket who’ve been coached on what to say the night before,” said Garner. NAPWA ED Frank Oldham said his group would work to help provide input, and C2EA’s Larry Bryant told Garner he’d work to get state-level C2EA activists to Washington to provide their perspective. Garner got an earful from a range of providers and advocates when she asked for input on the long-term rethinking. Several comments urged review of the 2005 Institute of Medicine report on “Public Financing and Delivery of HIV/AIDS Health Care” (link to PDF) that called for the establishment of a new national entitlement to ensure health care for all poor and low-income people living with HIV/AIDS. And others called for stronger, more responsive government administration – particularly from the federal Health Resources and Services Administration (HRSA), which was not represented at the meeting. Change on the horizon Some governmental representatives and title groups were clearly anxious and agitated over the prospect of change. But it’s clear that HELP staffers are committed to a thorough rethinking of the RW system, which was crafted to respond to public health and political priorities, many of which have changed with time. C2EA, NAPWA and other groups will work to help PLWHAs have a strong voice in the rethinking process. And we’ll fight for a broader, more effective system of HIV care with nationwide standards for access, quality and accountability that will put the U.S. on the track to universal access to HIV prevention, treatment, care and support by 2010. To get involved in this important working group, send your contact info to charles_garrison@help.senate.gov.