The O’Neill Institute established the HIV Policy Project, formerly known as the Ryan White Policy Project, in 2014 to consider issues related to sustaining and adapting the Ryan White HIV/AIDS Program within a changing health care environment. Funded by the federal government at approximately $2.3 billion per year, the Ryan White HIV/AIDS Program is the third largest source of financing for HIV care after Medicaid and Medicare and is the cornerstone of the Nation’s response to the domestic HIV epidemic. In recent years, we have expanded the focus of the HIV Policy Project to encompass broader policy and legislative dialogues over the future of HIV care and prevention. This project is supported by funding from Gilead Sciences.
The HIV Policy Project is guided by an advisory group consisting of:
- Gina Brown, Southern AIDS Coalition
- Tori Cooper, Human Rights Campaign
- Connie Garner, Foley Hoag
- Ernest Hopkins, San Francisco AIDS Foundation
- Emily McCloskey, NASTAD
- Ace Robinson
- Carl Schmid, HIV + Hepatitis Policy Institute
- Naomi Seiler, Milken Institute School of Public Health, George Washington University
- Axel Torres Marrero, Hyacinth AIDS Foundation
- Andrea Weddle, HIV Medicine Association
As we mark the 40th anniversary of the discovery of the first cases of HIV this June, the United States should celebrate progress on HIV while addressing the challenges that remain. We must acknowledge and seize the opportunity presented by recent efforts to end the domestic HIV epidemic by 2030. The following key actions are needed in 2021 to move the United States toward accomplishing the goals of the Ending the HIV Epidemic (EHE) Initiative: (1) Refine the roadmap to ending HIV by updating the National HIV/AIDS Strategy and bolstering the EHE Initiative; (2) Protect HIV civil and human rights, including by restricting law enforcement access to public health data and modernizing HIV criminal laws; (3) Strengthen HIV health care systems by expanding Medicaid in all states, improving HIV prevention and care for Medicaid beneficiaries, and responding to the neglected needs of people aging with HIV; and (4) Build stronger and more resilient communities, including by supporting the Housing Opportunities for People with AIDS (HOPWA) Program and addressing housing affordability.
This one-page document summarizes the above Big Ideas brief.
More than half of people living with HIV in the United States are aged 50 or older, and a growing number of people are living and aging with HIV into their 70s and beyond. Concerted action is needed to meet the needs of older people living with HIV. The burdens of HIV, aging, and related health comorbidities, combined with the social and structural challenges that people aging with HIV face, necessitate not only a focus on HIV-related outcomes, but also a comprehensive response aimed at treating comorbidities and improving long-term health and quality of life. The following policy actions are recommended: (1) Develop models of care and prevention for people aging with HIV and train and equip the clinical and non-clinical workforce; (2) Expand opportunities for older people living with HIV to make social connections through community-based programs that address isolation, stigma, and trauma; (3) Maintain Medicare Part D drug access protections (e.g., Six Protected Classes) and expand focus on high-quality care and quality of life; (4) Allocate more funding to programs that support financial security and access to employment, housing, food, and public benefits for the aging HIV population; and (5) Promote the meaningful participation of older people living with HIV in the Ending the HIV Epidemic (EHE) Initiative and in broader advocacy efforts.
This Quick Take document discusses how federal discretionary HIV programs contribute to the HIV response in the United States and how increasing funding for these programs is essential. Federal discretionary funding, however, has never been sufficient to meet the needs of all communities heavily impacted by HIV. The Ending the HIV Epidemic (EHE) Initiative provided the first substantial increase in federal discretionary HIV funding in decades, but current funding still may be insufficient to meet the EHE goal of reducing the number of new HIV transmissions by 90% by 2030. The document also notes that more people will be living and aging with HIV and that the need for prevention services will grow. The United States must maintain its commitment to funding a mix of prevention, care, research, and social services to sustain HIV successes.
The COVID-19 pandemic has exposed inequities in United States and weaknesses in the public health response at the federal, state, and local levels. While expanded utilization of telehealth services amid the COVID-19 crisis has created opportunities to overcome persistent barriers to engagement in HIV care, COVID-19 has also led to clinic closures, staffing redeployments, and funding cuts in health care and human services programs, which could undermine efforts to end the HIV epidemic. This report outlines policy recommendations for fighting COVID-19, improving equity, and sustaining momentum in responding to HIV.
This one-page document summarizes the above Big Ideas brief.
The COVID-19 pandemic has spurred greater adoption of telehealth services. In order for HIV telehealth services delivery to evolve from a crisis response to an integrated component of sustainable, high-quality care delivery, policy action is needed. The following key actions are recommended: (1) Give clients more control over where, when, and how to access services, and give providers more flexibility in responding to patients in ways that lessen the demands of a full patient panel; (2) Focus on promoting equity and intervening to address the Digital Divide and other barriers for individuals and organizations; (3) Create new opportunities for shared learning so that HIV providers and clinics can learn best practices and avoid common pitfalls; and (4) Invest in research to develop and evaluate innovative approaches for using telehealth technology.
This one-page document summarizes the above Big Ideas brief.
Better Meeting the Needs of People Living with HIV Is How to End the HIV Epidemic (April 2020)
This report highlights actions that can be taken by jurisdictions and advocates to improve the health of all people living with HIV. As community stakeholders and policymakers in the United States focus on achieving the goals of the Ending the HIV Epidemic (EHE) Initiative, many people with HIV have felt neglected and under-prioritized. To succeed at ending the HIV epidemic, differing strategies are needed to support three groups of people with HIV: (1) those who are unaware of their infection, (2) those who are in care but not virally suppressed, and (3) those who have been diagnosed but are not in care.
This Quick Take document discusses the final recommendation for pre-exposure prophylaxis (PrEP) from the United States Preventive Services Task Force (USPSTF) and why the PrEP recommendation matters. The USPSTF PrEP recommendation has the potential to increase access to PrEP for HIV prevention and means that most private health plans and all Medicaid-expansion programs must cover PrEP without cost-sharing. To support effective implementation of this recommendation, the document outlines critical actions that are needed from federal agencies, health plans, health departments and insurance regulators, and providers and communities. Implementation of the recommendation must ensure access to comprehensive PrEP services and require coverage without cost-sharing of new PrEP regimens as they become available.
One in four people living with HIV will become infected with Hepatitis C (HCV) during their lifetime. This policy brief shows how the Ryan White HIV/AIDS Program has a major role to play in helping eliminate HCV among people living with HIV. This brief identifies target populations and various barriers as well as providing strategies to address those issues. These strategic actions include comprehensive efforts to overcome barriers to treatment, better metrics for taking progress toward elimination, increased emphasis on re-screening, and stronger planning and commitment to HCV elimination in states, communities, and clinics.
Quick Take on the Ryan White HIV/AIDS Program in the United States (January 2019)
This Quick Take document discusses how the Ryan White HIV/AIDS Program is leading the way in getting people with HIV virally suppressed by ensuring stable access to HIV primary care and medication along with critical support services. The documents describes the parts of the Ryan White Program and the importance of the program for meeting the health care needs of people with HIV and addressing new challenges.
Quick Take on HIV Prevention in the United States (January 2019)
This Quick Take document provides an overview of the HIV epidemic in the United States and describes the range of tools and approaches used to prevent HIV infection, including HIV testing and linkage to care, treatment as prevention, pre-exposure prophylaxis (PrEP) and post-exposure prophylaxis (PEP), and syringe and harm reduction services. The document also discusses the need for continued support for and new investment in HIV prevention.
State and Local ‘End the Epidemic’ Plans Can Drive HIV Progress (December 2018)
Released in December 2018, this report identifies key elements of a plan to ‘End the Epidemic.’ One of the most significant elements of some emerging plans is to treat HIV earlier by offering same-day or rapid start of antiretroviral therapy (ART) when individuals receive an HIV diagnosis or are re-engaged in HIV care. Other significant elements include continued focus on monitoring engagement and actively intervening to address barriers to care and an emphasis on scaling up access to pre-exposure prophylaxis (PrEP) and ensuring appropriate access to post-exposure prophylaxis. The report also provides some leading examples of jurisdictions across the county that have developed plans. The jurisdictions highlighted in the report include New York State, New York City, Washington State, the District of Columbia, Houston, and Los Angeles.
In the report, the authors outline the elements of a rapid start program and discuss common barriers to scaling up rapid start, ranging from clinician acceptance and patient readiness to insurance and AIDS Drugs Assistance Program (ADAP) eligibility. The challenge in adopting rapid start of ART is developing workable models of care that can be implemented across our diverse national health care landscape. The authors also discuss how the Ryan White HIV/AIDS Program can help overcome barriers to widespread adoption of rapid start.
The Ryan White program has led the way in the development of integrated models of care that other parts of the United States health system are seeking to replicate. It has also enabled states, territories, and local jurisdictions to mount flexible responses to their unique epidemics, while also raising the standard of care and expectations for population-level outcomes for everyone. This issue brief examines the changing role of the Ryan White program and how it supports Medicaid, Medicare, and private insurance to prevent HIV transmission and reduce health care spending.
Originally built as a standalone system, the Ryan White program has evolved to a complement to the insurance system. Nonetheless, as the health system seeks to better integrate services and design more effective and efficient care delivery models, this report offers strategies for better aligning the Ryan White program with insurance to ensure that people with HIV do not get left behind.
The Ryan White program has always looked and acted differently than other parts of the health system. This report provides recommendations for ways to streamline existing planning and monitoring activities to retain critical aspects of community engagement. It also forcefully calls for increased Ryan White program investments to build health department data management systems and capacity to better partner with Medicaid, Medicare, health plans, and HIV prevention programs to monitor engagement in care and intervene when care is interrupted.
Generations of dedicated HIV care providers and community partners have built today’s HIV care system. While more must be done to better reach underserved populations and communities, the need is great to bolster and sustain the existing HIV care workforce. This report offers recommendations for building upon recent changes to the AIDS Education and Training Center (AETC) program and other efforts to support clinical and non-clinical providers.
These reports were informed by consultations with people living with HIV, HIV medical and non-medical providers, Ryan White grantees, and federal HIV policy and program staff. The Ryan White Policy Project is supported by funding from Gilead Sciences, Inc. The report was prepared by Crowley and Garner. Crowley reports no recent personal financial interests related to the report. Garner is policy director for Foley Hoag representing Gilead Sciences.
Other project publications include:
Crowley, Jeffrey, and Jen Kates. Updating the Ryan White HIV/AIDS Program for a New Era: Key Issues and Questions for the Future.”. 2013.
Thematic Area: Infectious Diseases