By Dawn Wolfe Gutterman
What is the Ryan White CARE Act?
Who was Ryan White? He only lived 19 years, but in that time Ryan White managed to create a legacy of saved lives and renewed hope for people living with HIV/AIDS.
White was diagnosed at age 13 in 1984. Given six months to live, all he wanted to do was live as normal a life as possible.
Succumbing to ignorance and fear about his disease, his Indiana school district said, “no,” a decision that White’s family successfully fought in court.
What is the Ryan White CARE Act? First enacted by Congress in 1990 (the year of White’s death), the act provides funding to try to address the unmet health needs of people living with HIV/AIDS. Through its various sections, called “Titles,” the act funds services ranging from primary health care to providing food and transportation to health care appointments.
Speak OUT for the CARE Act
Contact our state Senators and your U.S. Congressional Representative and urge them to fully fund the Ryan White CARE Act, and to continue providing funding for the community-based organizations that support poor people living with HIV/AIDS:
Senator Carl Levin: 269 Russell Office Building, U.S. Senate, Washington, D.C. 20510-2202. Call (202) 224-6221. Email Senator Levin by visiting the Contact Center on his website at http://www.senate.gov/~levin.
Senator Debbie Stabenow: 133 Hart Senate Office Building, Washington, DC, 20510. Call (202) 224-4822, TTY: (202) 224-2066, or e-mail [email protected].
To find your U.S. Representative, visit Project Vote Smart at http://www.vote-smart.org or call the U.S. Congressional Switchboard at (202) 224-3121.
WASHINGTON – A proposal to require that three-fourths of the funds provided by the Ryan White Comprehensive AIDS Resources Emergency Act be used for “core medical services” could do “major damage” to community-based service organizations that help people living with HIV/AIDS.
The proposal, which appears in one Senate version of the bill, is a subject of great concern to Gay Men’s Health Crisis and to Barbara Murray, executive director of AIDS Partnership Michigan in Detroit. Community-based organizations like APM offer poor people living with HIV/AIDS services ranging from food to case management to transportation to physician’s appointments. The CBOs could lose funding for all of those services if the proposal is passed into law.
“My fear has been that hospitals and medical clinics don’t understand what case managers in community-based organizations do…and that they wish to take over the case management programs,” said Murray in an email to BTL.
“It will take great vigilance on our part…or major damageÊwill be done to the community based AIDS service organizations that have grown up around this epidemic,” she said.
According to the Senate version of the bill sent to BTL, “core medical services” would include:
“(1) Outpatient and ambulatory health services;
(2) AIDS Drug Assistance Program treatments;
(3) AIDS pharmaceutical assistance;
(4) Oral health care;
(5) Early intervention services
(6) Health insurance premiums and cost sharing assistance for low income individuals;
(7) Home health care;
(8) Home and community-based health services as defined under section 2614(c), except homemaker services;
(9) Substance abuse outpatient care;
10) Medical case management (including treatment adherence service)”
The 25 percent of funding that would still be spent on support services, “allows flexibility in the remainder 25 percent for support services, as long as they are related to medical outcomes,” according to the bill.
“We have to work with the entire person, and what this bill would do is devastate support services for people living with HIV and AIDS,” said Lynn Schulman, director of communications for Gay Men’s Health Crisis. Schulman added that other versions of the bill “are floating around out there,” so the situation is still fluid and could change when Congress returns from its summer break on Sept. 5.
Another controversial proposal in the Senate bill would change the CARE Act funding formula to shift funds from states that currently receive the bulk of the funding to Southern states. According to an Aug. 23 Washington Post Article, New York Senator Hillary Rodham Clinton has delayed the reauthorization over concerns that the provision “would have a devastating impact on New York.”
However, the last available House version of the bill would bring a slight increase in funding to Michigan, Murray said.
“We were reasonably happy with that outcome,” said Murray, who also stressed that the situation in Washington is changing so rapidly that every part of the bill may have changed by the time this issue of BTL is on the newsstands.
“The problem,” Murray said, “is that there has been very little increased funding, when what you need increased funding of significant proportions. And in the scheme of things, it isn’t a budget-buster. There just needs to be some conscionable thinking about what this means and how to pull it off. What’ll bust the budget is if you don’t deal with it now and you’re dealing with people who are not diagnosed and folks surface who are really, really sick — taking care of those folks gets expensive.”
According to an Aug. 31 “Positive Voice Update” from the National Association of People Living With AIDS, “On June 13, the House Appropriations Committee voted to flat-fund all portions of the CARE Act except Title II funding for states, which received a $70 million increase. This is the first year in more than a decade that the House has recommended no funding increase for [the AIDS Drug Assistance Program]. … On July 20, the Senate Appropriations Committee recommended slight funding increases for CARE Act titles, including a $2.4 million increase for Title I cities, a $15 million Title II increase for states, a $55 million increase for ADAP, a $2 million increase for Title III clinics, a $1.5 million increase for women and children services under Title IV, and $1.4 million for dental and healthcare-provider education programs.”
According to the Washington Post article, Clinton and other senators are hoping to reauthorize the CARE Act before Congress adjourns at the end of September.