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July 2005 NORA Coalition Discusses CARE Act Reauthorization On Monday, July 11, the National Organizations Responding to AIDS (NORA) coalition, for which AIDS Action serves as the convener, held its monthly meeting at the American Psychological Association. The guest speaker was Idalia Sanchez from the Health Resources and Services Administration (HRSA)’s HIV/AIDS Bureau (HAB), who gave an update on the reauthorization process for the Ryan White CARE Act. Peg Willingham, senior director of International AIDS Vaccine Initiative and member of the NORA Executive Committee, opened the meeting by welcoming members and introducing Ms. Sanchez. Ms. Sanchez began her remarks by thanking NORA members for the opportunity to speak with a diverse group of organizations that has demonstrated an outstanding commitment to mitigating the domestic HIV epidemic. She mentioned the correlation between successful outreach and increased demand for services. At HAB, Ms. Sanchez oversees the policy office that monitors the scope and effectiveness of the CARE Act and other HIV programs. Her presentation to NORA members provided insight into how HAB procedurally approaches the reauthorization process. HAB’s role in the reauthorization process is reporting information about the CARE Act to Congress and other federal agencies that request such data. For example, HAB released two reports in May of 2005: Examination of Fiscal Management and the Allocation of CARE Act Resources, and Maximizing Access to Medications Through Efficient Use of CARE Act Resources. The release of these reports was timed to coincide with late-stage reauthorization discussions, and many HIV advocates believe that these reports will influence the President’s and Congress’s decisions. Before HAB provided these evaluative reports, the bureau first reviewed the reauthorization process from five years ago, Ms. Sanchez told NORA members. This review gave HAB guidance and allowed them to identify useful and/or irrelevant procedures. Then, starting in November of 2003, a group of federal offices convened to examine the efficiency of the CARE Act. The group, which continues to meet periodically, is led by the Health and Human Services (HHS) Assistant Secretary for Planning and Evaluation, and includes representatives from such offices as the Office of General Counsel, the Assistant Secretary for Health, Office of HIV/AIDS Policy, and representatives from the White House. Ms. Sanchez stressed three important principles
of this year’s reauthorization process which she felt were shared
by most federal agencies and the President: flexibility, focus
on life-extending medications, and accountability. She further
explained these principles by using illustrations of recent policy
developments. For example, the Institute of Medicine (IOM) published
a report in 2003 called Measuring What Matters: Allocation,
Planning, and Quality Assessment for the Ryan White CARE Act.
In this report, the Institute of Medicine analyzed the feasibility
of all states transitioning to name-based reporting of HIV cases,
as some states currently use code-based reporting.* HAB “needs to get a better idea of how many people the CARE Act is serving,” Ms. Sanchez told NORA members. At present, HAB estimates that the CARE Act is serving 571,000 individuals in the country. Ms. Sanchez did not comment on the procedure of calculating this estimate, but stressed the necessity of due diligence and accountability. She admitted that “giving care requires provision of medical resources” and that HAB should know the precise amount of such provisions. NORA members asked Ms. Sanchez many questions concerning the CARE Act, often inquiring about the timeline for reauthorization and its potential for passage by the end of September 2005 (when the legislation is scheduled to expire). Ms. Sanchez consistently responded that HAB is not presently involved in the discussion about the CARE Act, and could therefore not inform NORA members as to the status. She reiterated that HAB’s role in the process is reporting information about the CARE Act to Congress and other federal agencies that request data. Donna Crews, AIDS Action’s director of Government Affairs and a member of the NORA Executive Committee, asked a question about the President’s $20 million Initiative to remove individuals from ADAP waiting lists. Since this Initiative is scheduled to expire in September and the CARE Act may potentially not be reauthorized before the expiration, Ms. Crews asked if HRSA had a plan for continuing or reconfiguring the President’s Initiative temporarily, until the CARE Act is actually reauthorized. Ms. Sanchez responded that she was not aware of any such plan, if one did exist. Peg Willingham next provided a synopsis of a June 23rd Senate Foreign Relations Committee hearing: Hope for the Future: Developing an HIV/AIDS Vaccine. She briefly shared with NORA members the difficulties and challenges associated with the development of an HIV vaccine and how it differs from other viral vaccines.** A budget and legislative update was then provided by Ms. Crews. She focused on developments in the appropriations process for fiscal year 2006. She shared that although the Division of HIV/AIDS Prevention at the Centers for Disease Control and Prevention received a cut of nearly $5 million in the recently passed House Labor, Health and Human Services, and Education (Labor-HHS) appropriations bill, the bill report states that the cut will only affect information-technology projects, not actual HIV prevention programs. Advocates are currently trying to discern the validity of this claim. As for other programs in the Labor-HHS bill, abstinence funding received less than the President recommended and the Housing Opportunities for People With AIDS (HOPWA) program received an $8.2 million increase.*** Pat Hawkins, from the Whitman Walker Clinic, provided a care and treatment update. Dr. Hawkins discussed an observed decline in newly identified HIV cases in the Washington, DC metropolitan area and informed NORA members this decline may be due to decreased funding for prevention efforts targeted at high-risk populations. NORA will convene again on September 12 at its regular location (American Public Health Association). Due to the Congress’ August recess, there is no scheduled August meeting. * Each state can use one of three forms of HIV reporting: name-based, code-based, or name-to-code-based. In name-based reporting, the individual who tests positive is identified by name. In code-based reporting, unique identifier codes are used in place of names. In name-to-code-based reporting, HIV cases are initially identified by name and are later switched to code. The CDC only accepts data for its surveillance reports from states that use name-based reporting for HIV. **For more information on the vaccine hearing, please see the July 1 edition of The Weekly Update. *** For more information on the House-passed Labor-HHS bill, see the July 1 issue of The Weekly Update. |
