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Ryan White CARE Act Expires: Reauthorization, Funding Status to be Determined

The Ryan White Comprehensive AIDS Resources Emergency (CARE) Act expired on September 30, 2005. Programs will continue to run uninterrupted through a continuing resolution until re-authorization is completed. The re-authorization process, however, will offer openings to change the existing policies, and AIDS advocates are concerned that this will mean cuts and restrictions instigated by the Administration.

The Ryan White CARE Act enables state and local community organizations to provide HIV/AIDS treatment services through the Health Resources and Services Administration (HRSA) under the U.S. Department of Health and Human Services. According to HRSA, the CARE Act “funds primary care and support services for individuals living with HIV disease who lack health insurance and financial resources for their care “as well as legislation, training, technical assistance, and demonstration projects.”1

Since 1990 the CARE Act has undergone reauthorization twice, once in 1996 and again in 2000. Former President Bill Clinton signed the Act into law each time, increasing appropriations overall by more than $850 million for HIV/AIDS treatment and support programs during those five years.2

Remains Under-funded

The amount of funding Congress has appropriated for CARE Act programs has increased from $220 million in 1991 to almost $2.1 billion in 2005. 3 When taking into account the changes in the spread of the HIV epidemic, however, the programs have been effectively flat funded for the last five years.4 More people today are living with the disease, and people with HIV are living longer and thus require more sustained care than ever before. For Fiscal Year 2006, President Bush has called for an increase of $10 million for prescription drugs, a modest proposal, given the estimated $300 million needed to adequately treat the increasing numbers of people living with HIV/AIDS.5

Possible Changes

In his July 2005 State of the Union address, President George W. Bush called on Congress to reauthorize the CARE Act and suggested several principles, including: 1) serve the neediest first; 2) focus on core life-saving and life-extending services; 3) increase prevention efforts; 4) increase grantee accountability; and 5) increase flexibility of funds.6

Although the principles may at first glance appear sensible, the underlying policy changes they signal are worrisome to AIDS advocates across the country. AIDS advocates fear many of these changes will undermine HIV/AIDS efforts by changing the way AIDS funds are allocated and by de-funding programs that are not considered “core” services but are of great importance to the HIV-positive people who rely on them. Such changes are likely to disproportionately affect the poorest and most vulnerable people living with AIDS.

The President would change the way funds are allocated by eliminating the “hold harmless provision” designed to protect certain metropolitan areas from possible reductions in Ryan White funding from year to year. The number of AIDS cases determines funding and under the current formulae for counting AIDS cases, which includes cases spanning the last ten years, cities which have longer histories of an HIV epidemic are disproportionately vulnerable to decreases in resources in the event of overall funding reductions compared with cities with newer epidemics.7 Lifelong AIDS Alliance of Seattle, Washington explains, “changing ‘hold harmless' makes sense, but without additional funding, new methods of determining priority areas would only take from needy clients in one region to pay for needy clients in another.”8 Other potentially harmful changes include no longer counting HIV/AIDS cases within metropolitan centers in determining allocation of CARE Act funds to states, shifting resources to strictly defined areas of “severe need,” and eliminating the requirement for the foundation of planning bodies whose members reflect those people in the community living with HIV/AIDS.9

Some advocates of the CARE Act have also expressed concerns that the Bush Administration's recommendations would hurt low-income people living with HIV/AIDS by de-funding vital programs that provide non-core services. Lifelong AIDS Alliance, explains that “federal dollars are scarce and should focus on the services most needed by clients. However, keeping people with HIV/AIDS healthy takes more than just visits to the doctor and pills. Core services should include case management, meals, housing, emotional support, and alternative therapies.”10

Other Suggestions

Several HIV/AIDS advocacy organizations have proposed principles of their own for consideration during the reauthorization process. They propose key changes to the CARE Act that would hopefully extend its scope and improve the quality of care provided through its programs. For example, a statement released in 2004 by the National Alliance of State and Territorial AIDS Directors (NASTAD) lists seven additional provisions that it would like to see included in the reauthorized bill. These include: 1) equitable access to state-of-the-art care; 2) equitable access by income, racial or ethnic group, age, gender or sexual orientation, or place of residence; 3) reinforcing the jurisdiction of states as grantees; 4) ensuring coordination of all public health programs; 5) maximize simplicity and flexibility of programs; 6) minimizing disruptions to service delivery; and 7) emphasizing the federal government's role in ensuring equitable access to care while incorporating state resources.11

NASTAD has teamed up with a coalition of research and advocacy organizations recently to launched the Ryan White AIDS Care and Treatment In Our Nation (ACTION) Campaign. NASTAD, The HIV Medicine Association, the AIDS Institute, and the American Academy of HIV Medicine have joined to bring media attention to the reauthorization of the CARE Act and put pressure on the Capitol to continue to fund its many programs. Jean White-Ginder, mother of the late Ryan White, and a board member of the AIDS Institute, explained the coalition's mission, “we urge the Congress to move expeditiously, and, more importantly, for the Congress and the Administration to provide adequate funding for the CARE Act so that everyone who is in need of these lifesaving medications and medical care, no matter where they live, can have the chance to stay alive.”12

In addition, the Campaign to End AIDS (C2EA) promotes the reauthorization of the CARE Act as one of its front-burner issues. It states, “this year, 2005, let's work to make sure that Congress not only OKs the CARE Act for another five years but keeps its fundamental, existing structure and services intact—and allocates to it the $2.5 billion it needs to be fully operative.”13 Embarking in caravans on October 10, 2005, as part of C2EA, advocates and people living with HIV/AIDS from across the nation traveled to Washington, DC, to rally support and raise awareness for the struggle to end the AIDS epidemic in the United States. During these C2EA “Days of Action,” on November 5-8, 2005, activists rallied and marched to Anacostia, a section of southeast DC with the highest infection rate in the District, engaged in civil disobedience in a “die-in” in front of the White House, and lobbied their representatives in Congress to support reauthorization of the CARE Act.

Congressional leaders expected to start working on a draft of the bill in the coming months include Health, Education, Labor, and Pensions (HELP) committee chair, Senator Michael Enzi (R-WY) and ranking minority member, Senator Edward Kennedy (D-MA), as well as Energy and Commerce (E&C) committee chair, Representative Joe Barton (R-TX) and ranking minority member, Representative John Dingell (D-MI).14 At that time Congress may decide to make changes to the reauthorized RWCA in line with the President's proposed principles.

References

  1. US Department of Health and Human Services: Programs, accessed 10 October 2005, <http://hab.hrsa.gov/>.
  2. US Congressman John B. Larson, “President Signs Ryan White CARE Act into Law,” Press Release published 19 October 2000, accessed 10 October 2005, <http://www.house.gov/>.

  3. Ryan White CARE Act Appropriations History: FY 1991 to FY 2005, Health Resources and Services Administration, accessed 10 October 2005, <ftp://ftp.hrsa.gov/>.
  4. Arrive Net, “The Future of Ryan White AIDS Funding,” Press Release published 19 October 2005, accessed 10 October 2005, <http://press.arrivenet.com/>.
  5. President Bush's Principles for the Reauthorization of the Ryan White CARE Act, Lifelong AIDS Alliance, accessed 8 November 2005, <http://www.lifelongaidsalliance.org/>.
  6. Ryan White CARE Act Reauthorization Principles, US Department of Health and Human Services, ( 27 July 2005 ), accessed 10 October 2005, <http://www.hhs.gov/>.
  7. Ibid.
  8. Ibid.
  9. Bush Administration's Ryan White CARE Act Principles Would Undermine San Francisco and California 's Systems of HIV Care ( 27 June 2005 ), accessed 10 October 2005, <http://www.sfaf.org/>.
  10. President Bush's Principles for the Reauthorization of the Ryan White CARE Act , Lifelong AIDS Alliance, accessed 8 November 2005, <http://www.lifelongaidsalliance.org/>.
  11. National Alliance for State and Territorial AIDS Directors, “Principles for Reauthorization of the Ryan White CARE Act,” (13 August 2004), accessed 10 October 2005, <http://www.nastad.org/>.
  12. Ryan White ACTION Campaign, “New Coalition Launches Campaign to Reauthorize Ryan White CARE Act,” ( 22 September 2005 ), accessed 10 October 2005, <http://thebody.com/>.
  13. Campaign to End AIDS, “C2EA: Front-Burner Issues for 2005,” accessed 10 October 2005, <http://www.campaigntoendaids.org/>.
  14. Dyana Bagby, “Activists Urge Ryan White CARE Act Renewal,” Washington Blade, 14 October 2005, accessed 15 October 2005, <http://washingtonblade.com/>.

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