Jennifer Kates, PhD Vice President; Director, Global Health and HIV Policy Kaiser Family Foundation Washington DC Ryan White at 25 Years: How an Emergency Program Grew to become the Nation’s HIV Safety Net FORMATTED: MM/DD/YY Washington DC: April 15, 2016From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA.

Slide 2 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Learning Objectives After attending this presentation, participants will be able to: Describe the history of the Ryan White HIV/AIDS Program Recognize the role of Ryan White in the current ACA health care environment Discuss how Ryan White supports the goals of the National HIV/AIDS Strategy

Slide 3 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Outline of Presentation Ryan White HIV/AIDS Program History & Overview Ryan White & the ACA The National HIV/AIDS Strategy Looking Ahead: What is the Ryan White HIV/AIDS Program of the Future?

Slide 4 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Ryan White

Slide 5 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Before The Ryan White Program No HIV care system in the U.S. – No federally supported care network – Models of care being developed at local level No effective treatments; HIV morbidity and mortality were high – Pre-treatment (HAART) era – Pre-routine HIV screening era – Pre-TasP, Pre-PrEP Many people with HIV effectively locked out of insurance coverage, faced discrimination and stigma in general health care system Hospitalization was common; outpatient care not yet routine Strain on state and local budgets Limited understanding of HIV care and treatment needs

Slide 6 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Federal Precursors to The Ryan White Program 1986: AIDS Service Demonstration Grants – Provided funding to the four hardest-hit cities: New York, San Francisco, Los Angeles, and Miami (by 1990, 24 cities). 1987: AZT Drug Reimbursement Program – Provided funding to all 50 states for AZT. 1988: Pediatric AIDS Service Grants – Helped hard-hit cities develop programs to provide HIV care to children and their families. 1989: Funding outside epicenters 1990: Ryan White Comprehensive AIDS Resources Emergency (CARE) Act passes SOURCE: HRSA HAB, A Living History,

Slide 7 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. From Emergency Program to Underpinning of HIV Care in the U.S. Has become the nation’s safety net for uninsured and underinsured people with HIV, underpinning of HIV care system Largest HIV-specific federal grant program in U.S. and one of only disease-specific programs in country Third largest source of federal funding for HIV care (after Medicaid & Medicare) Requires involvement of people living with HIV Serves more than 500,000 people with HIV each year Has evolved over time with changing treatment and health coverage and financing landscape Funding has risen over time, though flat in recent years and has not kept pace with need or inflation (discretionary program) SOURCE: HRSA HAB and Kaiser analysis.

Slide 8 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. The Ryan White HIV/AIDS Program needs to be reauthorized by Congress or it cannot continue. 1. True 2. False

Slide 9 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Authorization History First authorized in 1990 Reauthorized four times – 1996 – 2000 – 2006 – authorization expired September 30, 2013 – No sunset provision – Programs can continue without an authorization – An authorization does not guarantee appropriations Timing of next reauthorization uncertain

Slide 10 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Funding History, Current and Constant USD SOURCE: Kaiser analysis of Ryan White appropriations data from HRSA, OMB, and CRS, and of CPI data from the Bureau of Labor Statistics.

Slide 11 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Program Overview Parts – Part A: Funds hard hit urban areas (EMAs, TGAs) – Part B (includes ADAP): Funds all 50 states, DC, PR, and other territories/jurisdictions – Part C: Directly funds organizations to provide care service/support infrastructure – Part D: Directly funds organizations to provide family-centered/community-based services to children, youth, and women living with HIV – Part F: AETCs, Dental, MAI, SPNS Allocation of funding to jurisdictions/grantees varies by Part Funding requirements – Payor of last resort – Core medical services

Slide 12 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Ryan White Grantees by Part, Funding, & Number of Grantees PARTFY 2016 (in millions)Number of Grantees/Awardees $% Part A$ % 24 EMAs, 28 TGAs Part B$1,31557% 59 States/Territories, 16 Emerging Communities ADAP (non-add)$ Part C$205.19% 347 Part D$75.13% 115 Part F AETC$33.61% 5 National, 11 Regional Part F Dental$13.11% 56 Reimbursement, 12 Community Partnership SPNS$251% 64 TOTAL$2, % SOURCE: Kaiser analysis of data from OMB and HRSA’s Congressional Budget Justification, FY 2017.

Slide 13 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Most Ryan White clients are uninsured. 1. True 2. False

Slide 14 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Most Ryan White Clients Are Insured; Rely on Program to Supplement Coverage Limits SOURCE: HSRA HAB, Ryan White HIV/AIDS Program Annual Client-Level Data Report

Slide 15 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Most Ryan White Clients Are Very Low Income SOURCE: HSRA HAB, Ryan White HIV/AIDS Program Annual Client-Level Data Report

Slide 16 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. *Results from logistic regression model adjusted for age, race, place of birth, poverty, education, homelessness, and HIV disease staCID Patients with Ryan White More likely to be Prescribed ART ( ) SOURCE: Bradley H, Viali AH, Wortley PM, Dempsey A, Hauck H, Skarbinski J. “Ryan White HIV/AIDS Program Assistance and HIV Treatment Outcomes”, Clinical Infectious Diseases, First published online: August 30, 2015.

Slide 17 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. *Results from logistic regression model adjusted for age, race, place of birth, poverty, education, homelessness, and HIV disease stage Patients with Ryan White More likely to be Virally Suppressed ( ) SOURCE: Bradley H, Viali AH, Wortley PM, Dempsey A, Hauck H, Skarbinski J. “Ryan White HIV/AIDS Program Assistance and HIV Treatment Outcomes”, Clinical Infectious Diseases, First published online: August 30, 2015.

Slide 18 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. The ACA

Slide 19 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. The Health Care & Coverage Landscape Has Shifted CONSUMER PROTECTIONS & PRIVATE INSURANCE REFORMS HEALTH INSURANCE MARKETPLACES BENEFIT STANDARDS MEDICAID EXPANSION PREVENTION ENHANCEMENTS MEDICARE FIXES HEALTH SYSTEM IMPROVEMENTS

Slide 20 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. What share of people with HIV live in states that have not expanded Medicaid? 1. 10% 2. 42% 3. 64%

Slide 21 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Status of State Medicaid Expansion Decisions Implementing Expansion (32 States including DC) – 58% PLWH Not Moving Forward at this Time (19 States) – 42% PLWH NOTES : Expansion decisions current as of March 14, 2016; PLWHA estimates based on those living with an HIV diagnosis in SOURCES: Kaiser, State health facts, affordable-care-act; Kaiser analysis of data from CDC Atlas.

Slide 22 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Under the ACA, can Ryan White still support someone with HIV if they have new insurance coverage? 1. Yes 2. No

Slide 23 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Ryan White & the ACA Continues to be main/only source of care/treatment/services for people with HIV who remain uninsured – Living in states that have not expanded Medicaid – Undocumented (not eligible or Medicaid or marketplace coverage) – Lawful permanent residents in 5 year waiting period for Medicaid eligibility – Unable to engage with traditional system of insurance Continues to be supplemental source of care/treatment/services for people with HIV who are insured, including those in the marketplace – For those new to coverage, helped ensure smooth transitions into insurance – Helps some afford new coverage – Helps to supplement new coverage when gaps remained (e.g., premium and co-pay assistance, services not covered by traditional insurance) SOURCE: Crowley J, Kates J, Updating the Ryan White HIV/AIDS Program For A New Era: Key Issues and Questions for the Future, April 2013,

Slide 24 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. SOURCE: Crowley J, Kates J, Updating the Ryan White HIV/AIDS Program For A New Era: Key Issues and Questions for the Future, April 2013, Outreach to Engage in Care Non- Medical Case Management Treatment Adherence Medical Transportation Medical Case Management Referrals Health Insurance Premium Assistance & Cost- Sharing HIV Counseling & Testing Ryan White Supports Many Services on The HIV Care Continuum

Slide 25 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Services Provided by RWHAP-funded and non- RWHAP-funded Outpatient Facilities SOURCE: Weiser J, Beer L, Frazier EL, Patel R, Dempsey A, Hauck H, Skarbinski J. “Service Delivery and Patient Outcomes in Ryan White HIV/AIDS Program–Funded and –Nonfunded Health Care Facilities in the United States”. JAMA Intern Med. 2015;175(10):

Slide 26 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Issues & Challenges to Consider Payer of last resort requirement still applies – Ryan White funds may not be used “for any item or service to the extent that payment has been made, or can reasonably be expected to be made” by another payer – Ryan White grantees and subgrantees must “vigorously pursue” eligibility for other funding sources/enrollment into coverage Grantees report need for technical assistance, additional guidance – Support for engaging with private insurance mechanisms (e.g., contracting) – Insurance literacy (also needed for clients) Important to reach out to clients about re-enrollment Uncertain funding for the future

Slide 27 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. The NHAS

Slide 28 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Update of the NHAS to 2020 First NHAS released in 2010, covered Since then, new developments and major changes: – Treatment as prevention, 052, in 2011 – PrEP approved in 2012 – ACA fully implemented in 2014 Four goals are the same – Reducing new HIV infections – Improving access to care and health outcomes – Reducing HIV-related health disparities – Achieving a more coordinated national response Vision is the same 10 updated or new indicators Implementation plan

Slide 29 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. National HIV/AIDS Strategy Updated to 2020

Slide 30 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Ryan White & the NHAS Contributes to all four goals of the strategy – Reducing new HIV infections – Improving access to care and health outcomes – Reducing HIV-related health disparities – Achieving a more coordinated national response Right people: key populations Right places: priority areas Right practices: testing, linkage to care, services, viral suppression

Slide 31 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Looking Forward

Slide 32 of 32 From J Kates, PhD, at Washington, DC: April 15, 2016, IAS-USA. Key Questions for Ryan White What we know: – Insurance coverage alone ≠ access to or receipt of care – Ryan White is nation’s safety net for people with HIV and will be for the foreseeable future – Has enjoyed bipartisan support throughout its history – Can continue without a reauthorization if there are continued appropriations – Will continue to need to change as health delivery and financing system around it changes What we don’t know: – Future state decisions about Medicaid expansion, and marketplace design – Impact of changing and new treatment regimens, including generics – Role for Ryan White in PrEP – The future of bipartisan support – Whether the program will be reauthorized and what changes might be proposed if it is