Social workers, clinicians and health care advocates took a cruise of the Intracoastal Waterway last Friday night to bring attention to a federal program considered vital for HIV/AIDS care.
“I’m an example of how you can live,” said Irma Williams, a social worker from New York who has been HIV positive since 1989. “For me it’s a chronic illness like diabetes. I take one pill every day and I’m healthier than I’ve ever been.”
Williams was in South Florida last week to attend the United States Conference on AIDS. The Diplomat Resort & Spa in Hollywood hosted the 20th annual conference which included panel discussions, presentations, movie screenings and various other activities and educational forums related to HIV/AIDS.
On Friday night, more than 300 people boarded “The Biscayne Lady,” a luxury party yacht for a dinner cruise. The cruise was designed to illuminate the importance of a coalition of HIV/AIDS medical providers receiving support under the Ryan White Care Act.
Jessica Reinhart is part of the coalition. Reinhart, an associate director of community outreach at the AIDS Healthcare Foundation, spoke with SFGN about the Ryan White Care Act and in particular the 340B drug discount program.
“It’s a bloodline for keeping clinics alive,” said Reinhart, who works out of the AHF office in Brooklyn, New York. “340B requires pharmaceutical companies to give discounts. If it wasn’t for 340B the Ryan White program couldn’t function – 340B keeps it afloat.”
Ryan White was an American teenager who, as a hemophiliac, contracted the HIV virus and eventually died in 1990 of complications from AIDS. A federal health care program was established in his name to provide life-saving treatment for those living with HIV/AIDS.
“Experts recognize that, to be successful in the fight against HIV/AIDS, persons living with the disease need more than medical care,” said Andrea Jeria, spokesperson for the Washington, D.C. law firm of Powers, Pyles, Sutter & Verville. “Ryan White clinics often serve as a gateway to a broader range of services. The 340B program allows them to stretch their resources to support the full continuum of care that their patients need, from diagnosis, to linkage to care, to medication adherence and viral suppression.”
Williams said she keeps the virus suppressed by taking one pill of Complera a day and avoiding stressful situations. In New York, that can be tough, which is why Williams said she enjoyed visiting Florida for the conference, relaxing on the beach and watching the waves roll in.
“Stigma,” Williams said, “is one of the toughest battles with HIV.”
Tamara Haught agrees. Haught, is one of the driving forces behind the Sero Project – an organization that seeks to change the way law enforcement agencies view HIV.
“You can’t defeat stigma until you stop criminalizing people with HIV,” said Haught, who granted SFGN an interview on the rooftop of the Biscayne Lady.
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A mother and HIV positive woman, Haught worked with legislators in Iowa to change outdated laws that require sex partners to disclose their HIV status.
“These laws are actually barriers to people getting tested for HIV,” Haught said. “There’s no proof these laws reduce infections.”
Haught handed out buttons with the message “Undetectable = Untransmittable” to passengers on the cruise. Her organization is one of many who benefit from the Ryan White 340B access. At the federal level, the program is administered by the Office of Pharmacy Affairs (OPA) within the Health Resources and Services Administration (HRSA).
The 340B program was born out of the Veterans Health Care Act of 1992 and is not funded by taxpayers. Drug manufacturers agree to provide discounts on the condition Medicaid covers their drugs.