"So this fight is not over. Not for the 1.2 million Americans who are living with HIV right now. Not for the Americans who are infected every day. This fight is not over for them, it's not over for their families, and as a consequence, it can't be over for anybody in this room -- and it certainly isn't over for your President."
Remarks by the President on World AIDS Day, December 1, 2011, George Washington University, Washington, D.C.
February 9, 2012
Dear President Obama:
Thank you for committing the United States to increased HIV treatment access at home and abroad as part of your stirring World AIDS Day address at George Washington University this past December.
With the power of the bully pulpit, you underscored the leadership role the United States has played in the 30-year fight against AIDS. As you noted, through bipartisan support, this nation has done more than any other to develop and deploy effective strategies to stop this global health threat.
Your 2011 World AIDS Day address marked an historic presidential commitment to usher the "Beginning of the End" of this pandemic. As you keenly observed, tremendous HIV-related scientific advances -- largely a credit to American investment and ingenuity -- have been nothing short of amazing. While scientists continue efforts to develop an effective vaccine and cure, many other tools already exist to save lives and dramatically curb new HIV infections. The challenge before us is to ensure that these tools are made available and accessible to all people everywhere who need them.
The certainty of your words "... make no mistake, we are going to win this fight," and acknowledgements that much work remains to be done, perfectly capture the unease besetting the AIDS field domestically and internationally. Now that we finally have the tools to end AIDS, will global powers unite and commit to realizing the promise of scientific advances?
Thanks to your leadership in ending the long-standing ban on HIV-positive foreign visitors, the International AIDS Conference returns to the U.S. in July 2012 with the theme Turning the Tide Together. Over 20,000 scientists, community leaders, activists and media representatives will gather in Washington, D.C. seeking answers to this pressing question. The AIDS 2012 conference provides you with an unprecedented opportunity to detail how you and your Administration will continue to lead the domestic and global fight against HIV/AIDS.
We urge you to seize this historic opportunity to further demonstrate the seriousness of your commitment to Turning the Tide of the epidemic. With your leadership, the United States can set in motion a dramatic reversal of the HIV/AIDS epidemic at home and abroad. Indeed, the National HIV/AIDS Strategy you unveiled in 2010 is a roadmap to achieve better outcomes in the HIV/AIDS fight domestically that will also have an impact globally.
To deliver on the momentum of your inspirational World AIDS Day address, and to prepare for AIDS 2012, we offer the following recommendations:
1. We urge you to deliver a keynote address at the International AIDS Conference. As our nation's leader, you are best positioned to inspire goodwill across the nation and the world with your actions and determination to shepherd the beginning of the end of AIDS.
2. At the conference, we urge you and your cabinet to report on the National HIV/AIDS Strategy, describing current achievements toward the Strategy's objectives and explaining how greater progress can be made in order to meet its important targets by 2015.
There is also much to be done in 2012 independent of the International AIDS Conference. The following sections identify needs and provide recommendations for steps that can be taken now to maximize the success of the National HIV/AIDS Strategy. The example set by the United States government can inspire our partners across the nation and globe to press for even greater progress toward ending HIV/AIDS in the years ahead.
Overview of Recommendations to maximize the success of the National HIV/AIDS Strategy
1. Increase AIDS funding in the fiscal year 2013 budget.
2. Establish the level of resources needed for and the potential cost savings of the National HIV/AIDS Strategy.
3. Ensure health reform implementation advances health services for people living with HIV/AIDS.
4. Drive innovation through the 12 Cities initiative and widely disseminate lessons learned.
5. Ensure that prevention and treatment programs target the hardest hit communities.
6. Ensure adequate capacity and leadership within White House and HHS AIDS Policy offices to sustain a focus on Strategy implementation.
7. Standardize metrics for program reporting.
I. Invest in a Future Free from HIV/AIDS
In an era of austerity, smart financial investments are needed to slow new HIV infections as rapidly and cost effectively as possible to protect future generations from an HIV crisis that is even more costly and difficult to control.
New evidence that HIV treatment adherence by HIV-positive people not only improves health and longevity but also stems the spread of new infections -- heralded as the scientific achievement of 2011 by Science -- heightens the urgency to expand clinical care, linkage and support service for low-income people with HIV. The U.S. Centers for Disease Control and Prevention (CDC) lists HIV as a public health "winnable battle," and supportive housing services for homeless individuals with HIV have been shown to improve health outcomes with more cost-effective use of medical care and support services.
In an era of difficult financing choices, investments in HIV/AIDS make good fiscal sense. Investments to curb the epidemic today will yield dividends tomorrow in costly clinical care averted. Every death and HIV infection prevented amounts to tens and even hundreds of thousands of dollars saved. In 2012, we recommend you champion the following prudent investments:
Ryan White is one of the seven most effective programs funded by the federal government, but remains inadequately funded, including the AIDS Drug Assistance Program (ADAP).
1. Increase AIDS funding in the fiscal year 2013 budget. The Office of Management of the Budget rates the Ryan White program as one of the seven most effective programs funded by the federal government, and yet its parts, including the life-extending AIDS Drug Assistance Program (ADAP), remain inadequately funded. Efforts to diagnose HIV among those previously unaware of their infection and quickly link them to needed services will require adequate funding for expansion of HIV testing, linkage to care, and essential medical, housing and support services. Increased investments in HIV-related medical care are needed to reach the more than 50 percent of HIV-positive Americans who currently risk severe health complications because of inadequate access to healthcare. Treatment expansion will also help prevent new case of HIV infection. To scale-up combination HIV prevention as called for in the National HIV/AIDS Strategy, funding cuts made to HIV prevention grants to state and local jurisdictions should be restored. Other effective strategies such as substance abuse treatment, mental health services, comprehensive sex education, peer support services and HIV/AIDS research merit increased funding in order to meet the Strategy's goals. Your support for full funding for the Prevention and Public Health Fund established in the Affordable Care Act is also needed to supplement, not supplant, existing investments in HIV/AIDS and other priority public health programs.
2. Establish the level of resources needed for and the potential cost savings of the Strategy. In order to inform policy, the federal government should order a professional assessment of the level of investment needed to realize the goals and objectives of the National HIV/AIDS Strategy. As part of the assessment, analysts should estimate the corresponding fiscal impact on public payers of realizing the targets established in the Strategy. An official assessment would complement academic studies conducted to estimate the Strategy's resource needs and long-term fiscal impact. Previous analyses suggest long-term savings can be realized by curbing new HIV infections as rapidly as possible. Further evidence demonstrates that early and sustained access to treatment will contribute to improved health outcomes and fewer HIV infections. An evidence-based fiscal assessment of the Strategy can inform how current and future allocations ought to be directed to yield the greatest and most cost-effective impact.
II. Prioritize High Impact Activities
The Strategy demands that all HIV-related federal activities advance the nation's efforts to achieve better outcomes in three categories: reductions in new HIV infections, improved health outcomes for people living with HIV and decreased HIV disparities among most-affected populations. As part of these activities, we urge the Administration to advocate for the reversal of stigmatizing policies that serve as barriers to entering testing or care for people with or a risk of HIV. These include state laws that threaten criminal prosecution for acts of consensual sex and for conduct, such as spitting or biting, that poses no significant risk of HIV transmission. Strategies that advance the human rights of people with HIV must be paramount in the Administration's activities.
3. Ensure health reform implementation advances access to health services for people living with HIV/AIDS. The Administration must work to fully implement the Affordable Care Act (ACA) in ways that address the care, treatment, service and prevention needs of people living with HIV/AIDS and successfully alleviates existing health disparities. Specifically, the Department of Health and Human Services (HHS) must help thousands of currently uninsured people living with HIV/AIDS make the transition to Medicaid and private insurance without interrupting continuity of care. A successful transition will include incorporation of HIV/AIDS primary care and specialty providers (including Ryan White program providers) into Medicaid and Qualified Health Plan networks, inclusion of AIDS service providers as navigators, and coordination between Medicaid and the exchanges to ensure continuity of care. To achieve such a transition, it is critical that people living with HIV/AIDS, their medical providers and advocates are included as stakeholders. The Ryan White Program and other AIDS-focused programs have developed sophisticated clinical care models that minimize cost and maximize health outcomes. The Center for Medicare and Medicaid Innovation Center should conduct demonstration projects to evaluate these models in terms of outcomes, cost effectiveness and scalability, and it should develop innovative financing mechanisms to support this model under Medicaid, and share best practices with states.
The Administration must help thousands of currently uninsured people with HIV/AIDS make the transition to Medicaid and private insurance without interrupting the comprehensive medical care they may be receiving.
Realizing the full potential of the ACA to turn the tide against HIV/AIDS in the U.S will require a commitment to routine HIV testing and a comprehensive health benefits package. It is imperative that protections ensuring access to care for people living with HIV/AIDS and other high-cost medical conditions be included in regulations implementing the Essential Health Benefits (EHB) package, which will become the floor for benefits offered in plans sold through the exchanges, as well as Medicaid benefits for newly eligible beneficiaries. A recent Bulletin issued by HHS adopting a "benchmark approach" to EHB implementation indicates an alarming degree of state flexibility with regard to the scope of services that plans will be required to cover. Future regulations must ensure that even within a benchmark approach, there are adequate protections to ensure access to comprehensive care for people living with HIV/AIDS and other vulnerable populations. Without an adequate benefits floor, state-based health disparities will continue.
ACA's investments in public health, prevention and workforce development must be fully implemented and include major new investments in HIV prevention and wellness and the training of new HIV/AIDS primary care and specialty providers. To maximize the opportunities created by the ACA's investments in Federally Qualified Health Centers (FQHCs), the Bureau of Primary Health at the Health Resources Services Administration (HRSA) must ensure that FQHCs are providing high quality and comprehensive care and treatment for people living with HIV/AIDS.
4. Drive innovation through the 12 Cities initiative and widely disseminate lessons learned. Intensive assessment and planning in the twelve-jurisdiction initiative will help federal and state governments understand how to reach Strategy targets at the local level through expanded services, bundled and braided funding streams and careful evaluation. In 2012, federal officials should partner closely with officials and community representatives in each jurisdiction, including the meaningful involvement of people living with HIV, to ensure they are maximizing opportunities with limited resources to help meet Strategy targets. Greater transparency of the 12 Cities initiative will keep a focus on learning and innovations and serve as a catalyst for change in these and other communities. The barriers encountered in these jurisdictions will also be indicative of obstacles that will need to be addressed for greater fidelity to the Strategy. Ongoing technical support from federal agencies will be critical to determining optimal resource allocations and to drive and replicate successful innovations.
An initiative similar to the 12 Cities project is urgently needed in high-incidence rural states, principally in the South, which are experiencing severe HIV-related health disparities and where the lessons learned from the 12 Cities initiatives may not translate due to differing funding, political, and social factors. HHS should commit to establishing best-practice models from the 12 Cities initiative and create new opportunities for other areas to adopt, implement and evaluate new innovative programmatic plans. These jurisdictions can be and should be used as innovators to address HIV and the health disparities felt in many poor and disenfranchised communities. The Administration should explore the creation of Health Equity Zones that look not only at HIV but across the spectrum of disease.
5. Ensure that prevention and treatment programs target the hardest hit communities, including gay men and other men who have sex with men, African American men and women, Latinos and Latinas, transgender persons, and injection drug users. We can't win this fight by focusing solely on the "easy wins." The impact of HIV/AIDS is felt most in America's most vulnerable communities. The National HIV/AIDS Strategy acknowledges this and emphasizes the need to tailor programs to meet the needs of people living with and most at risk for HIV infection. It is incumbent upon your Administration to aggressively pursue this commitment in the implementation of new and existing HIV/AIDS programs. We also urge you to stand with science and urge Congress to repeal again the ban on federal funding for syringe exchange programs, and end all funding for proven-ineffective abstinence-only-until-marriage programs.
III. Manage for Outcomes
With its focus on coordination and accountability, the Strategy demands a renewed focus by public entities on managing HIV-related efforts to achieve better outcomes in the fight against HIV/AIDS.
6. Ensure adequate capacity and leadership within White House and HHS AIDS Policy offices to sustain a focus on Strategy implementation. With so many effective interventions, strategic planning from U.S. leadership is essential to ensure access to combination approaches. Better coordination is not enough; resource optimization for maximum public health outcomes is required. Guidance and prioritization from the White House Office of National AIDS Policy (ONAP) and the HHS Office of the Secretary is critical to such an effort. The HHS Office of the Secretary will require increased resources to continue providing leadership in the implementation of the Strategy. Towards this end, we fully endorse the proposal to allocate one percent of HHS HIV/AIDS funding to the HHS Office of the Secretary to support activities of strategic importance to NHAS implementation.
7. Standardize metrics for program reporting. The Strategy articulates milestones for an improved domestic HIV/AIDS response. Planning and evaluation are best served by standardized reporting across all relevant federal departments and funded HIV/AIDS programs. Uniform data elements across HIV prevention, care and treatment and supportive service programs will help identify gaps, measure progress and identify best practices in efforts to achieve desired results. The federal government must quickly identify and use its authority to widely disseminate a manageable set of standardized indicators needed to understand program performance and changes in the epidemic across the U.S. This needs to be coupled with a significant reduction and streamlining of existing federal reporting requirements.
Mr. President, thank you for considering these recommendations to showcase federal leadership in the fight against HIV/AIDS in the United States, and to share our nation's accomplishments at the upcoming International AIDS Conference. We look forward to working with you, your Administration and your new director of the Office of National AIDS Policy to make change real.
Judith D. Auerbach, Ph.D.
Science and Policy Consultant,
San Francisco AIDS Foundation
Chris Collins, Vice President, Policy
amfAR, The Foundation for AIDS Research
Neil Giuliano, Chief Executive Officer
San Francisco AIDS Foundation
Dana Van Gorder, Executive Director
Robert Greenwald, Managing Director
Center for Health Law and Policy Innovation, Legal Services Center of Harvard Law School
AIDS Action Committee of MA
Kathie Hiers, Chief Executive Officer
Vice President of Policy and Advocacy
Vanessa Johnson, JD
U.S. People Living with HIV Caucus
Paul A. Kawata, Executive Director
National Minority AIDS Council
Brook Kelly, Human Rights Attorney
U.S. Positive Women's Network (PWN), a project of WORLD
Director of Legislative and Public Affairs
National Minority AIDS Council
Jean Flatley McGuire, PhD, Professor of Practice, Health Sciences Department
Daniel C. Montoya
Deputy Executive Director
National Minority AIDS Council
David Ernesto Munar
AIDS Foundation of Chicago
John Peller, Vice President of Policy
AIDS Foundation of Chicago
Charles Stevens, Steering Committee Member
HIV Prevention Justice Alliance
Julie M. Scofield, Executive Director
National Alliance of State and Territorial AIDS Directors
Carole Treston, Executive Director
AIDS Alliance for Children, Youth, and Families
Andrea Weddle, Executive Director
HIV Medicine Association
Janet Weinberg, Chief Operating Officer
Gay Men's Health Crisis
Phill Wilson, President & CEO
Black AIDS Institute
A. Toni Young
Community Education Group
(list in formation -- as of 2/8/12)