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

2. Logistics
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3. 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

4. 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

5. 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

6. 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

7. Ryan White HIV/AIDS Program Appropriations History 1991-2012

8. 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)

9. 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

10. 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

11. 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

12. 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

13. 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

14. 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 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.

15. 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.

16. 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

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

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

19. 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

20. 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.

21. 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.

22. Contact Information
Laura Cheever, MD Acting Associate Administrator Department of Health and Human Services Health Resources and Services Administration HIV/AIDS Bureau

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

24. 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

25. 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

26. “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

27. 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.

28. 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.

29. 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

30. A New Context

31. 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.

32. 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,

33. 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.

34. Key Issues & Questions

35. 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

36. 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

37. 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.

38. 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

39. 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

40. 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

41. Looking Forward

42. 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

43. 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.

44. 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

45. 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.

46. Q&A

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

48. Thank you!
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