12/11/2012 01:17 pm ET Updated Dec 06, 2017

Open Letter to Secretary Sebelius for World AIDS Day

Thirty organizations from across the U.S. applauded Health and Human Services Secretary Kathleen Sebelius's announcement -- made in commemoration of World AIDS Day -- that the federal government will make a provision of the health reform law available to states to better coordinate services for people living with HIV/AIDS. Using its authority, HHS can encourage states to develop new coordinated care models for better management of HIV/AIDS, utilizing established service systems developed by unprecedented federal and state investments over the past 22 years. The open letter to Secretary Sebelius follows:

Dear Secretary Sebelius:

Thank you for your leadership in improving the health of all Americans, including those of us living with and affected by HIV/AIDS.

We applaud your bold announcement for World AIDS Day 2012, that the U.S. Department of Health and Human Services (HHS) will issue rules explicitly targeting HIV among the chronic conditions HHS seeks to better manage in partnership with state Medicaid programs through the "Health Home" option afforded by the Affordable Care Act.

States granted the Health Home option will enjoy temporary increased federal Medicaid reimbursement to create comprehensive systems of care designed to assist individuals with chronic health conditions to achieve optimal medical management and improved health outcomes.

We further applaud your pledge that HHS will assist states in developing Health Home proposals. Health Home designation for better health management of HIV is tremendously important for the 1.2 million Americans living with HIV and their hopes of receiving high-quality, continuous care.

In order to realize maximum benefit, we ask that HHS explicitly encourage states to craft Health Home proposals that leverage their established Ryan White HIV service systems in efforts to create more robust and effective networks that enjoy new support thanks to the ACA. It will also be important for guidance to address how states can ensure the Medicaid expansion population benefits from the Health Home care models and to address continuity of care issues for people with HIV transitioning from Ryan White to Medicaid-funded care management, coordination and support services.


With more than two decades of sustained federal and state investment, Ryan White programs are literally a lifeline for hundreds of thousands of people with HIV across the U.S. HHS can play an important role in making sure Ryan White service systems transform and modernize with ACA support to achieve better health outcomes for this vulnerable population.

Put simply, ACA implementation is a unique opportunity to strengthen Ryan White programs and learn from their success so that people with other chronic health conditions may enjoy equally robust, comprehensive systems of wellness and care.

For years, the service providers, AIDS organizations and HIV experts comprising the Ryan White sector have collaborated to deliver streamlined, effective HIV care and other supportive services for HIV-positive people. They effectively assumed the health-home role before such a designation and its incentives were codified in federal law.

That was out of necessity. Many people with HIV are extremely vulnerable -- battling mental health issues, substance abuse and homelessness. HIV is not the only problem for many HIV-positive people and therefore solutions must adequately meet the whole person and address an array of client-centered needs.

It would be a shame if those years of experience, government investment, and the vast collective expertise in the Ryan White sector are not properly utilized by the ACA's health home program. Designing new Health Home proposals for states is a rare and important opportunity to actively involve state AIDS directors, other public health officials, AIDS organizations, HIV medical providers, advocates and people living with the disease in an effort to close existing service gaps that discretionary Ryan White funding could never adequately address.

Too many lives are at stake for ambiguity or duplicative systems development given the historic and unprecedented investment in Ryan White systems of HIV care. It's time to build on what we started more than 20 years ago, when the legacy of a little boy named Ryan White transformed the nation's approach to care and support for those living with HIV/AIDS in need.


AIDS Action Baltimore
AIDS Action Committee
AIDS Alliance for Children, Youth & Families
AIDS Foundation of Chicago
amfAR, The Foundation for AIDS Research
The AIDS Institute
AIDS Project Los Angeles
AIDS Treatment Data Network
AIDS United
American Academy of HIV Medicine
Community Access National Network
Communities Advocating Emergency AIDS Relief (CAEAR) Coalition
Gay Men's Health Crisis (New York)
Harlem United (New York)
Health and Disability Advocates (Illinois)
HIVictorious, Inc. (Madison, Wisconsin)
HIV Medicine Association
Housing Works (New York)
Moveable Feast (Baltimore, MD)
National Alliance of State and Territorial AIDS Directors
National Association of People With AIDS
National Minority AIDS Council
The National Working Positive Coalition
HIV Prevention Justice Alliance (HIV PJA)
Project Inform (California)
San Francisco AIDS Foundation
South Carolina Campaign to End AIDS
Treatment Access Expansion Project (Boston)
Treatment Action Group (New York)
Village Care (New York)