April 18, 2008
THE HILL WAS ALIVE
Rep. Fortuño and González talk Puerto Rico
They spoke in three different languages but when they got together to educate key members of Congress about AIDS policy on Monday and Tuesday this week, the 2008 Cylar Awardees spoke in perfect harmony. Gloria González, Esther Boucicault, Diane Williams, and Health GAP's Paul Davis and Asia Russell were in D.C. as part of a whirlwind of events surrounding the fourth-annual Keith D. Cylar Activist Awards, which took place yesterday evening (look for a full report in next week’s Update). The Awards are given to remarkable AIDS activists from around the world in honor of Housing Works cofounder Keith Cylar, who died of complications from AIDS in 2004.
In Creole, Spanish and English, respectively, Boucicault, González, Williams, Russell and Davis talked to lawmakers and their staffers about the need for funding for qualified health care workers in the President's Emergency Plan for AIDS Relief (PEPFAR), the urgency of the Health Resources and Services Administration (HRSA) overseeing Ryan White funds in embattled Puerto Rico, a national strategy to end AIDS and an end to the federal ban on needle exchange. Some 35 Housing Works clients accompanied the Cylar Awardees in D.C. and made their own Hill visits to talk about the Early Treatment for HIV/AIDS Act, HASA for All, improved Medicaid—and other policy changes to that impact poor people living with AIDS.
Despite traveling delays that held her up for four days, Boucicault spoke alongside her fiance Cesar Vincent about the lack of qualified health care workers in Haiti that prevents people with HIV from getting adequate treatment. "I had to leave a hospital in the north of Haiti and go to Port au Prince to get adequate care," Vincent told Hill staffers, including Chad Kreikemeier, an aide to Sen. Chuck Hagel (R-Ne). Vincent recounted how health care workers were scared to touch friends of his because they had AIDS. "We need to train health care workers, pay them adequately and make sure there isn't discrimination right there at the hospital." Boucicault also noted, "My organization is the only one in the country where people receive necessary psychosocial case management, and that is because we have a grant from a Canadian foundation," and urged Kreikemeier to loosen PEPFAR restrictions on host countries in order to allow PEPFAR to be spent on those types of services.
Boucicault and Vincent’s personal experiences greatly impressed Kreikemeier. His boss is a key player in the fierce Senate battle for PEPFAR reauthorization, with Sen. Tom Coburn (R-Ok) threatening to oppose reauthorization of the bipartisan PEPFAR. "The problem in the Senate is we have policy people talking to us, but we don't get to hear what's really happening on the ground," Kreikemeier said. "Yeah, we have people who make needles who come in to lobby" for needle exchange but they are only looking out for their own interests, Kreikemeier said. He added that while "PEPFAR is going to be a tough battle I think you can find support here for improved health care workers."
Russell then urged Kreikemeier to include language in the PEPFAR reauthorization that would provide funding for training and proper compensation for doctors and nurses, as well as giving host countries wider discretion for spending PEPFAR dollars. For Russell and Davis, the lobby visits with their fellow Cylar awardees were just a few of the hundreds of Hill visits they have been on during the past few months, as they have been key players during the reauthorization of PEPFAR.
Needle exchange bill on the way
At the Hill visits, González spoke of Puerto Rico’s low Medicaid reimbursement rate (which encourages physicians to refuse to see Medicaid patients), the need for HRSA to step in to manage federal Ryan White funds in Puerto Rico and San Juan and the need for an end to a federal ban on syringe exchange. Puerto Rico has no comprehensive syringe exchange program. González, a former injection drug user living with HIV, said "Drug abuse is a disease. No one wants to be on the streets, but they need help to get through it." At Rep. Jose Serrano's (D-NY) office, an aide said the Congressman will be introducing a bill next week to lift the federal ban on needle exchange.
Bates lobbied by Williams and Housing Works Director of National Advocacy Christine Campbell during fire drill
A meeting with acting director of HIV/AIDS policy for the Department of Health and Human Services Chris Bates was interrupted by a fire drill—so the Cylar Awardees lobbied him from the street while folks waited to reenter the building. Bates hadn't heard of a recent letter HRSA sent to Puerto Rican activist Jose Colon about the island’s AIDS crisis but promised to familiarize himself with the issue. González asked that he speak to HHS Secretary Michael Leavitt, who has the power to take stronger action on Puerto Rico. González also had a meeting with Rep. Luis Fortuño, (R-PR) who introduced legislation in February (H.R.5292) to speed up HRSA intervention. Despite being initially starstruck by meeting Fortuno, who is running for Governor of Puerto Rico, González demanded further action to address the commonwealth’s mismanagement of AIDS funds.
'Real people' power
Diane Williams was most in her element with her “Housing Works family," whom she joined for a meeting with Rep. Ed Towns's (D-NY) staffer Julie Rones. Rones was enthralled by the Housing Works clients and staff and peppered them with questions about what is was like to have HIV/AIDS in New York. "She asked if people were selling their medication, and we told her that it's true," Williams said. Said Housing Works peer Felicia Carroll, "We gave her suggestions that the medications be individually packaged. She really appreciated our input, and would have had us stay all day if we could have."