The Ryan White Care Act

by Carolynn Race

At the Vice Presidential debate in October 2004, moderator Gwen Ifill asked the candidates:

"I want to talk to you about AIDS, and not about AIDS in China or Africa, but AIDS right here in this country, where black women between the ages of 25 and 44 are 13 times more likely to die of the disease than their counterparts. What should the government's role be in helping to end the growth of this epidemic?"

Vice President Dick Cheney responded by discussing the international epidemic and then noted:

"Here in the United States, we've made significant progress. I have not heard those numbers with respect to African- American women. I was not aware that it was — that they're in epidemic there, because we have made progress in terms of the overall rate of AIDS infection, and I think primarily through a combination of education and public awareness as well as the development, as a result of research, of drugs that allow people to live longer lives even though they are infected — obviously we need to do more of that."

Vice Presidential candidate John Edwards responded by noting concern about the international epidemic, and then mentioning:

"Here at home we need to do much more. And the vice president spoke about doing research, making sure we have the drugs available, making sure that we do everything possible to have prevention. But it's a bigger question than that. You know, we have 5 million Americans who've lost their health care coverage in the last four years; 45 million Americans without health care coverag."

The international HIV/AIDS epidemic is alarming. According to UNAIDS, the AIDS epidemic claimed 3.1 million (range 2.8-3.5 million) lives in 2004, and an estimated 4.9 million (4.3-6.4 million) people acquired the HIV virus in 2004 — bringing to 39.4 million (range 35.9-44.3 million) the number of people globally living with the virus.

And Ms. Ifill's question highlighted that the devastation of the HIV/AIDS epidemic is not limited to those outside the United States. It has had a distressing impact on this country — particularly among communities of color. An estimated 850,000 to 950,000 people in the United States are living with human immunodeficiency virus (HIV), including 180,000 to 280,000 who do not know they are living with the virus. (Source: Fleming P, Byers RH, Sweeney PA, et al. HIV prevalence in the United States, 2000 [Abstract 11]. Presented at the Ninth Conference on Retroviruses and Opportunistic Infections, Seattle, WA; February 24-28, 2002.)

According to the Centers for Disease Control and Prevention, from 2000 through 2003, the estimated number of HIV/AIDS cases increased among whites, Hispanics, and Asians/Pacific Islanders, remained stable among American Indians/Alaska Natives and decreased among blacks. Blacks accounted for 50 percent of all HIV/AIDS cases diagnosed in 2003.

AIDS Cases by Race/Ethnicity

Estimated numbers of diagnoses of AIDS, by race or ethnicity:

The Ryan White CARE Act

In his State of the Union address in February 2005, President Bush raised the issue of HIV/AIDS in this country. He said:

"Because HIV/AIDS brings suffering and fear into so many lives, I ask you to reauthorize the Ryan White Act to encourage prevention, and provide care and treatment to the victims of that disease. And as we update this important law, we must focus our efforts on fellow citizens with the highest rates of new cases, African American men and women."

In September, the Ryan White Comprehensive AIDS Resource Emergency (CARE) Act is set to expire. The CARE Act funds programs that have worked with municipalities and community-based organizations to provide services to more than 500,000 HIV-positive individuals who do not have sufficient health care coverage or financial resources to treat their HIV disease. Initially passed in 1990 and named in honor of Ryan White, who was diagnosed with AIDS in 1984 at the age of 13, the CARE Act was reauthorized in 1996 and in 2000.

In January 2005, a broad-based coalition, the Federal AIDS Policy Partnership's Ryan White CARE Act Reauthorization Working Group, outlined common principles for CARE Act reauthorization and urged Congress to support reauthorization of the lifesaving program.

The Working Group noted:

"The CARE Act is a payer of last resort, designed to address the gaps left by Medicare, Medicaid, private insurance, and other publicly financed health care systems. It remains an essential part of our nation's response to the domestic HIV/AIDS epidemic. While our organizations serve diverse constituencies and may have many nuanced and more detailed positions on the CARE Act reauthorization in the future, we all agree upon the necessity of the following:

• The CARE Act should be reauthorized by September 30, 2005.
  
• The CARE Act should remain focused on providing lifesaving care and treatment, and the necessary support services to attain that care.
  
• The CARE Act should continue to promote equitable access to a full range of vital health care and related support services for all persons living with HIV/AIDS nationwide.
  
• The CARE Act was designed to address the gaps in care and access for people with HIV/AIDS who are uninsured or underinsured, cannot readily access care or cover the costs of care on their own, and who do not have another source of payment for services, public or private, available to them. There should be a renewed commitment in the CARE Act to provide the necessary programs and resources to allow it to fill in the gaps in care and treatment and truly be the payer of last resort.
  
• An emphasis should be placed upon keeping CARE Act programs and services current with the latest research and knowledge of HIV/AIDS, including qualified health providers, advanced medications, and access to cutting-edge clinical trials.
  
• Collaboration and communication should be increased across all of the CARE Act titles, and this increased coordination should include federal agencies such as Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), the Social Security Administration (SSA), the Centers for Medicare and Medicaid Services (CMS), the Substance Abuse and Mental Health Services Administration (SAMHSA), the National Institutes of Health (NIH), the Department of Veterans Affairs (VA), and the Department of Housing and Urban Development (HUD).
  
• The community-sensitive aspects of the CARE Act, such as community planning, consumer input, and coordination with local health-care systems and decision-makers, should be maintained.
  
• The CARE Act should continue to promote knowledge of HIV status through voluntary testing.
  
• The CARE Act must be adequately funded through the annual appropriations process.

See a list of organizations supporting these principles.

At press time, legislation has not been introduced to reauthorize the Ryan White CARE Act, though HIV/AIDS advocates expect legislation to be introduced soon.

Contact your Members of Congress. Remind them of the importance of responding to the HIV epidemic in the United States, and urge them to reauthorize the Ryan White CARE Act before it expires in September.

General Assembly

In 1998, the 210th Presbyterian Church (U.S.A.) General Assembly directed General Assembly Council divisions to "work for public policies and funding to provide access to these lifesaving drug treatments for those affected by HIV/AIDS* and support continued HIV/AIDS prevention education that both stresses the reality that HIV/AIDS remains incurable and that provides information for persons to engage in behaviors that reduce or eliminate the risk of infection." (Minutes, 1998, Part I, p. 695)