Understanding the Ryan White HIV/AIDS Program June 4, 2013

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Agenda Welcome & Logistics Ryan White & the Affordable Care Act John Barnes, FCAA Ryan White & the Affordable Care Act Dr. Laura Cheever, Acting Associate Administrator, Department of Health & Human Services Health Resources & Services Administration HIV/AIDS Bureau Updating the Ryan White Program for a New Era: Key Issues & Questions for the Future Jen Kates, Vice President & Director of Global Health & HIV Policy, Kaiser Family Foundation Jeffrey Crowley, Program Director, National HIV/AIDS Initiative, O’Neill Institute, Georgetown Law Moderated Q&A Closing

Ryan White Program and Affordable Care AcT for Funders Concerned About AIDS June 4, 2013 Laura W. Cheever, MD Acting Associate Administrator Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau

Key Provisions of Ryan White Payer of last resort Can “wrap around” other insurance 75% core services/ 25% support services Core: outpt care, labs, meds, case management, mental health tx, substance abuse tx, oral health Support: transportation, emergency housing, child care, food assistance Can apply for Waiver if: no ADAP waiting list and core services available to all eligible patients Funding based on living HIV/AIDS cases in the most recent year of data Payer of last resort: State or Federal funding source List of Core Services and # of services on list 70 % of RW funding distributed by Formula

FY 2012 Ryan White HIV/AIDS Program Enacted Appropriation, $2. 39 FY 2012 Ryan White HIV/AIDS Program Enacted Appropriation, $2.39* Billion *“Includes $25 million for SPNS funding from Evaluation Set-Aside; $50 million announced on World AIDS Day 2011 Source: HAB/HRSA Budget Office

Ryan White HIV/AIDS Program Appropriations History 1991-2012

Ryan White HIV/AIDS Program - Clients Served Serves over 529,000 uninsured and underinsured persons affected by HIV/AIDS annually Approximately 208,809 people received medications through ADAP in 2010 About 46% of those on ARVs in U.S. use ADAP services Reaches those most in need, with an estimated 72% racial minorities, 31% women, and 81.6% uninsured/underinsured or receiving public health benefits (Source: RW Data Report, 2010) CDC reported AIDS cases- 66.5% minority, 23.5% women Reduced disparities in HIV care and treatment outcomes attributed to RW program (Saag, CID, 2012)

RW Clients’ Insurance Status 25.5% of RW clients are uninsured Remainder are underinsured, with RW wrapping around to provide a full compliment of services (care completion) CLIENT LEVEL DATA - PRELIMINARY Missing/unknown values (18%) excluded. Source: 2010 RW Services Report- Preliminary data

RW Clients’ Income Most RW clients are below 100% FPL Data is not available for clients <133% FPL Missing/unknown values (20%) excluded. Source: 2010 RW Services Report- Preliminary Data

Lessons Learned from States with Expanded Coverage California Continuity of care with expert, trusted providers Gaps in care Massachusetts Utilize RW funds to support services to address gaps in treatment cascade (care completion) Newly diagnosed and reported HIV rate fell 25% between 2006 & 2009 (increased 2% in U.S.); most recent rate fell by >50% Boston- only jurisdiction in waiver in recent years

Affordable Care Act Provisions with Future Impact on Ryan White Medicaid expansion to 133% of FPL Subsidies via health insurance exchanges 133% - 400% FPL Private market reforms Ban on health insurance rescissions Elimination of lifetime and annual caps Support of the medical home HRSA reviews 1115 waivers Medicaid- inpt, long term care not funded by RW Medical home via reimbursement instead of grants

Ryan White and ACA: Areas of Interaction Funding based on HIV/AIDS cases Aligns with the epidemic Not based on unmet need Payer of last resort Little flexibility Continuity of care 75% / 25% core/support services

The Future of Ryan White Full implementation of the ACA does not eliminate the need for the Ryan White Program Gaps in coverage will remain – both Medicaid and private insurance Gaps in services: oral health care, medications, support services to link clients to care Some groups will remain uninsured Training of providers (AETC) This quote is from POZ  Oct/Nov 2010   I’m assuming those reports will take into consideration that much of health care reform doesn’t kick in until 2014. Within the strategy, we have been very clear that we need to bridge the gap. Even in 2014, the Affordable Care Act won’t solve every problem, but it will make a lot of other problems easier and give us some breathing room to think about what we need. We certainly expect that the Ryan White program will continue after health reform is implemented, but in the short term we have some challenges. But I would also say that these aren’t challenges that are for the federal government alone to solve. There’s a role for state and local governments, private funders and community-based organizations. http://www.poz.com/articles/Jeffrey_Crowley_HIV_2536_19154.shtml

Status of the Ryan White Program The Ryan White HIV/AIDS Program is currently authorized through September 30, 2013. After that date, the Program will not sunset and can continue to operate through Congressional appropriations with or without subsequent legislation. The decision of whether or not to pursue reauthorization of the Ryan White Program will lie with Congress.

Support for the Ryan White Program The Administration strongly supports the Ryan White HIV/AIDS Program (RWHAP) and the continuation of the services provided. The Administration recognizes the need to continue the RWHAP, even as full implementation of the Affordable Care Act moves forward. Critical role in improving outcomes along the Continuum of Care/ Treatment Cascade

Number and Percentage of HIV-infected Persons Engaged in Selected Stages of the Continuum of HIV care—United States

Ryan White-funded Medical Care Ryan White Services Report 2010 (preliminary) 79% 56% Doshi RK et al. CROI 2013, abstract 1031a.

Retention in Medical Care Ryan White Services Report 2010 (preliminary) Retained in medical care: At least 2 medical visits that were at least 90 days apart Doshi RK et al. CROI 2013, abstract 1031a

Antiretroviral Therapy Ryan White Services Report 2010 (preliminary) Prescribed ART: Received a prescription for ART at any time in the year 80% Doshi RK et al. CROI 2013, abstract 1031a.

Viral Load Suppression Ryan White Services Report 2010 (preliminary) Viral load suppressed: HIV-1 RNA <200 copies/ml at the most recent check 70% Doshi RK et al. CROI 2013, abstract 1031a.

Contact Information Laura Cheever, MD Acting Associate Administrator Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau 301-443-1993 lcheever@hrsa.gov

Ryan White HIV Care Continuum Definitions Doshi RK et al. CROI 2013, abstract 1031a.

Updating The Ryan White Program for a New Era: Key Issues and Questions for the Future Presentation for the FCAA & Grantmakers in Health Webinar on the Landscape of HIV Care in the United States June 4, 2013 Jen Kates, Kaiser Family Foundation Jeffrey S. Crowley, O’Neill Institute, Georgetown Law

Major role, but not leading Overview Our Nation can be proud of its legacy of responding to the care and treatment needs of people living with HIV: The Ryan White HIV/AIDS Program is a critical contributor to our past and current successes It is likely to remain critically necessary to the HIV response The context in which Ryan White operates is changing, and this create new opportunities We need both short-term strategies to support people with HIV through the immediate ACA transition and a long-term vision of how Ryan White fits into a more integrated and efficient health care system 100% 82% Leading role Major role, but not leading

“Updating the Ryan White HIV/AIDS Program for a New Era” First authorized in 1990 Pre-treatment era Pre-routine HIV screening era Pre-TasP Is critical part of HIV care delivery system in U.S. Largest HIV-specific federal grant program in U.S. Third largest source of federal funding for HIV care Funding risen over time, though not necessarily kept pace with need 100% 82% Leading role Major role, but not leading

Ryan White is the Third Largest Source of Federal Funding for HIV Care in the U.S. SOURCE: Kaiser Family Foundation analysis of data from OMB, CBJs, and appropriations bills.

Federal Ryan White Funding (adjusted for inflation) and HIV Prevalence, 1991-2012 NOTES: The Consumer Price Index (CPI) from the Bureau of Labor Statistics (BLS) was used to adjust for inflation. HIV prevalence data are estimates based on analysis of data from CDC. SOURCES: Funding amounts based on Kaiser Family Foundation analysis of data from OMB, CBJs, appropriations bills, and CRS; Prevalence based on data from CDC; U.S. Department of Labor, Bureau of Labor Statistics.

Brief Reauthorization History Reauthorized four times 1996 2000 2006 2009 Current authorization expires September 30, 2013 No sunset provision Programs can continue without an authorization An authorization does not guarantee appropriations Timing of next reauthorization uncertain 100% 82% Leading role Major role, but not leading

A New Context

The “HIV Treatment Cascade” in the U.S. 2/3 not in regular care Only 33% on ART Only 25% virally suppressed SOURCE: Adapted from CDC "HIV in the United States–The Stages of Care" July 2012.

Most Ryan White Clients Are Insured, And Rely on the Program Because They Face Limits in Their Coverage NOTES: Based on those with reported insurance status (duplicated number of clients, N=764,163) in 2010. SOURCE: HRSA, HAB, http://hab.hrsa.gov/stateprofiles/index.htm.

Massachusetts Example Began implementing health reform more than a decade ago, to near universal access Changed how Ryan White funding was used in state, with greater share of resources shifting from paying for care to paying for: Insurance continuation Co-payments Support services to help engage people with HIV in care and support adherence State has observed decline in new HIV diagnoses, high viral load suppression Attributes to the combination of expanded insurance coverage, ART access, and extensive HIV community care network including Ryan White providers 100% 82% Leading role Major role, but not leading SOURCES: Cranston K et al. (2012). “Controlling the Massachusetts HIV Epidemic: Triangulated Measures of Care Access and HIV Incidence”,19th International AIDS Conference: Abstract no. TUPE212; Kevin Cranston, Personal communication, January 22, 2013.

Key Issues & Questions

Four Key Areas of Consideration Supporting People with HIV at Each Stage of the Treatment Cascade, from Diagnosis to Viral Suppression Building HIV Care Networks in Underserved Communities Integrating HIV Care Expertise into the Mainstream Health Care System Effectively and Fairly Allocating Ryan White Resources 100% 82% Leading role Major role, but not leading

Supporting People with HIV at Each Stage of the Treatment Cascade Focus on supporting the maximum number of people along the treatment cascade Streamline and strengthen jurisdictional planning Integrate HIV prevention and care planning Measure HIV clinical indicators and performance along the cascade Update the 75/25 rule 100% 82% Leading role Major role, but not leading

Health Insurance Premium Assistance & Cost-Sharing Select Examples of Ryan White Services That Support Clients Along The HIV Treatment Cascade Health Insurance Premium Assistance & Cost-Sharing Treatment Adherence SOURCES: Adapted from CDC "HIV in the United States–The Stages of Care" July 2012; Service Definitions from HRSA, HAB, 2012 Annual Ryan White HIV/AIDS Program Services Report (Rsr) Instruction Manual.

Building HIV Care Networks in Underserved Communities Re-tool Ryan White to better reach the most marginalized populations Strengthen the Ryan White program’s focus on gay and bisexual men Consider new programs for high cost cases or especially vulnerable populations Integrate people living with HIV and affected communities into care networks to provide testing, linkage, and retention services Support CBO planning for re-tooling, coordination and consolidation 100% 82% Leading role Major role, but not leading

Integrating HIV Care Expertise into the Mainstream Health Care System Address payer of last resort limitation during coverage transitions Enhance Ryan White’s ability to help individuals navigate insurance transitions Consider new service models to remove barriers to continuous care Work with other parts of the health system to strengthen the quality of HIV care Strengthen collaboration and coordination between Ryan White medical and support services providers Support HIV providers and the HIV workforce 100% 82% Leading role Major role, but not leading

Effectively and Fairly Allocating Ryan White Resources Reconsider funding formulas and allocation mechanisms Allocate funding to Parts A and B for both services and other program functions Expand or modify the SPNS program to encourage investigator-driven innovation Simplify grantee application and reporting procedures 100% 82% Leading role Major role, but not leading

Looking Forward

Key Messages Insurance coverage alone ≠ access to or receipt of care Ryan White is nation’s safety net for people with HIV and will continue to need to fill the gaps in care for PLWHA Who face limits in their coverage Have no coverage Will need to change, but continue to be critical; in unique position to help improve performance along treatment cascade Impact will depend on state decisions on Medicaid expansion and health care marketplaces, future support in Congress

What is Needed to Build on Our Paper? All of the issues require further policy development Each topic requires more in-depth analysis and discussion among stakeholders to develop actual legislative or administrative proposals Next couple of years can be used to bring innovative ideas to the table Ryan White medical and non-medical providers will be adapting to new insurance programs and they may be exposed to new models of service delivery. The ACA implementation experience could lead to new approaches for bolstering aspects of Ryan White. ACA and the treatment cascade may create more openness to change The current HIV policy dialogue is not focused on protecting the status quo, but rather, how to improve performance on the cascade and how to navigate the ACA transition. This may make it easier for stakeholders to considers updates to Ryan White than during past reauthorizations.

How Can Philanthropy Contribute to a Strengthened HIV Care System? Articulate a vision and develop a plan In considering the National HIV/AIDS Strategy, the treatment cascade, and changes in the health system, more work is needed to support the community in defining a vision for the future and planning how to achieve it Help providers and stakeholders adapt Ryan White is a treasured resource with history and expertise that must be retained. In navigating changes in the health system, we need to support providers and others in gaining new skills and taking on new roles Support community dialogue Change is difficult. More dialogue is needed at federal, state, and local levels to maximize consensus Generate analysis and educate policymakers More work is needed to educate policymakers and community members about what science tells us about best practices and interventions and to support research to answer critical questions

Conclusion We are poised to make major progress at getting more Americans with HIV better supported in systems of care in ways that lead to much better population-level viral suppression. For the foreseeable future, the Ryan White HIV/AIDS Program is likely to have a central role in seizing these opportunities and moving us closer to ending the HIV epidemic in the United States. We have a time-limited window in which philanthropy can help the HIV community to navigate through fundamental reforms in health care delivery in ways that leave the Ryan White HIV/AIDS Program stronger and more widely supported than ever.

Q&A

SAVE THE DATES! FCAA’s next program committee call: June 12th at 1 pm ET Email sarah@fcaaids.org for more info Part 2 webinar: Social Innovation Fund July TBD FCAA’s 2013 AIDS Philanthropy Summit December 9 & 10, DC

Thank you! Visit http://www.fcaaids.org/RyanWhite for resources and a recording of today’s call Visit http://www.gih.org to learn more about the Grantmakers in Health Remaining questions? Share them with us by email sarah@fcaaids.org or via Twitter @FCAA