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Health Care Reform Principles for Meeting the Needs of People With HIV

June 2009

Nearly 50 percent of people living with HIV in the U.S. (that are aware of their HIV status) do not have a reliable source of care -- many of them are uninsured or underinsured.1 Thirty-six percent of people with HIV in this country develop AIDS within one year of diagnosis despite a median progression period of 10 years.2 More than 20 percent of people living with HIV or 231,000 individuals in the U.S. are unaware of their HIV status. To meet the unique needs of HIV-infected patients, stem the spread of the epidemic, improve the quality of care and reduce the costs, any national health care reform plan must:

  1. Provide meaningful, early, affordable and stable access to the range of health care services and expert medical providers that the research demonstrates are important to effectively managing HIV disease. Affordability means reducing financial barriers to care by setting caps on out-of- pocket cost sharing and eliminating premium rate-setting according to health status, gender, age or demographic factors.

  2. Eliminate inequities in access to coverage and quality care based on socio-economic status, prior medical condition, race, ethnicity, gender, sexual orientation, actual or perceived disability, age, primary language, and geography (state of residence and type of community -- urban or rural).

  3. Focus on wellness and prevention by, among other things, requiring coverage of routine HIV testing to promote earlier diagnosis and linkage to care.

  4. Prohibit payer practices that discourage enrollment of HIV/AIDS patients or otherwise create barriers to care, including: exclusion of HIV/AIDS practitioners and clinics from provider networks, burdensome prior-authorization requirements, placement of HIV antiretroviral drugs on higher cost-sharing tiers, and arbitrary service limits.

  5. Include robust monitoring and oversight mechanisms for public and participating private health plans to evaluate effectiveness and enforce compliance with cost-sharing, mandatory minimum benefit standards and non-discriminatory enrollment requirements.

  6. For all payers, including Medicare and Medicaid, ensure access to expert HIV care through fair payment mechanisms that cover the cost of delivering HIV primary and associated care as provided by primary care practitioners and other specialists. Payment mechanisms should support effective models for delivering HIV care, such as medical homes, discourage costly administration, be transparent and be focused on public health needs and priorities.

  7. Expand coverage under Medicaid and Medicare by eliminating categorical eligibility requirements and waiting periods, respectively.

  8. Build on and seamlessly integrate into the reformed delivery system the existing Ryan White care system, which has developed medical home programs for providing comprehensive, coordinated, high quality HIV care.

  9. Include a comprehensive and coordinated national strategy to address HIV medical workforce issues, without which the HIV care system will be in serious jeopardy.


  1. Institute of Medicine, National Academy of Sciences, Board on Health Promotion and Disease Prevention. Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White. 2004.

  2. CDC. HIV/AIDS Surveillance Report, 2007. Vol. 19. Atlanta: U.S. Department of Health and Human Services, Centers for Disease Control and Prevention; 2009. Accessed April 14, 2009.

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