The Senate Health, Education, Labor, and Pensions Committee held a hearing on March 2 on the reauthorization of the Ryan White CARE Act (P.L. 101-381). First established by Congress in 1990, the Act provides states and localities with funding for health care and support services associated with HIV/AIDS, and its authorization is set to expire September 30, 2000. “Much has changed in those ten years since the start of the Ryan White program,” said Committee Chair James Jeffords (R-VT). “As we consider how to improve the CARE Act, we must continue to focus our attention on meeting the needs of the communities hardest hit by the AIDS epidemic, and especially, providing services for those who are infected but who are not receiving care,” he added.
The Act served roughly 500,000 people living with HIV/AIDS in 1999. Of that number, nearly 6 in 10 individuals were poor. Those served were also five times more likely to be uninsured, three times more likely to be African-American, and 50 percent more likely to be women.
Funding streams for the Act are divided into five titles: Title I funds programs in cities that have been hardest hit by HIV/AIDS; Title II funds efforts to provide health care, health insurance, and drug therapies in all 50 states; Title III funds primary care and early intervention services; Title IV funds care and support programs for women, children, and families; and Title V funds special projects of national significance.
Witnesses unanimously agreed that the Ryan White CARE Act has positively impacted the communities and individuals it seeks to serve. According to Sandra Thurman of the White House Office of National AIDS Policy, the CARE Act has been instrumental in reducing the frequency and length of inpatient hospitalization by 30 percent, reducing AIDS mortality by 70 percent, reducing mother-to-child transmission by 75 percent, and enhancing the length and quality of people’s lives. “When the CARE Act was originally created we were sadly unable to do much for those who were sick….The CARE Act is now solidly about living with HIV and AIDS,” she said.
Although witnesses solidly praised the Act, they pointed out the challenges that lie ahead as the committee undertakes the reauthorization process. These challenges include the need for an increased authorization due to the increasing number of infected individuals seeking services, targeted prevention messages for particularly vulnerable populations, and increased efforts to meet the needs of rural and underserved urban communities.
U.S. Surgeon General David Satcher detailed the changing demographics of HIV/AIDS. The fastest growing populations of new HIV infection are among women, minorities, and youth. “Women accounted for 23 percent of new AIDS cases in 1998, with 80 percent among racial minorities…and as many as half of all new HIV infections occur in persons under the age of 25,” Dr. Satcher told the committee. It also is estimated that two out of every three women living with HIV are mothers of at least one child under the age of 19. Both Dr. Satcher and Ms. Thurman suggested that prevention messages should be tailored to reach specific populations, such as women, minorities, and youth.
While agreeing that prevention messages should be specially tailored to meet racial, ethnic, cultural, linguistic, and gender needs, Rep. Tom Coburn (R-OK) told the committee, “Current prevention messages ignore successful interventions that have historically curtailed other contagious diseases,” adding that, “Partner notification is an extremely effective tool for disease control, especially for women.” As part of the reauthorization package for the Ryan White CARE Act in 1996, Congress instructed the Institute of Medicine (IOM) to examine the issue of mandatory testing and counseling for pregnant women. In 1997, IOM recommended “universal HIV testing, with patient notification, as a routine component of prenatal care.” Rep. Coburn asked the committee and the U.S. Public Health Service to seriously consider mandatory testing and partner notification during the reauthorization process, saying, “Partner notification is a simple matter of life and death. And all too often, silence does indeed equal death.”
However, several members of the committee as well as witnesses expressed reservations about mandatory testing, including Sen. Orrin Hatch (R-UT) who oversaw the original passage of the Act in 1990 with Sen. Edward Kennedy (D-MA). “I have difficulties with mandatory testing. I think that voluntary testing is working,” he said. Sen. Tom Harkin (D-IA) expressed his concern that mandatory testing would inhibit individuals from seeking testing and Dr. Satcher said that he is “fearful that mandatory testing would work against us.”
Additionally, the committee heard the poignant testimony of two women whose lives have been deeply affected by HIV/AIDS–Jeanne White, mother of Ryan White, and Lory-San Clark who is HIV-positive. Ms. White, who spoke on behalf of AIDS Action, told the committee, “I believe that we can build upon the greatness of the Ryan White CARE Act. We must look forward, modernize the Act and ensure that it can meet the demands and challenges facing the HIV/AIDS communities.” Ms. Clark agreed, saying, “The law is a miracle for people like me.”