Overview: Assessing the Patchwork of Care and Services for People with HIV/AIDS in the U.S.

1. Overview: Assessing the Patchwork of Care and Services for People with HIV/AIDS in the U.S. Institute of Medicine Committee on HIV Screening and Access to Care Meeting 3/Workshop 2 June 21, 2010 Washington DC Jennifer Kates, Kaiser Family Foundation

2. Current public financing strategies for HIV care have provided care and extended the lives of many low-income individuals. However, significant disparities remain in assuring access to the standard of care for HIV across geographic and demographic populations. The current federal–state partnership for financing HIV care is unresponsive to the fact that HIV/AIDS is a national epidemic with consequences that spill across state borders. State Medicaid programs that provide a significant proportion of coverage for HIV care are dependent upon widely varying resources and priorities that produce an uneven and therefore ineffective approach to managing the epidemic. Under the current patchwork of public programs that finance HIV care, many HIV-infected individuals have no access or limited access to the standard of care for HIV. Fragmentation of coverage, multiple funding sources with different eligibility requirements that cause many people to shift in and out of eligibility, and significant variations in the type of HIV services offered in each state prevent comprehensive and sustained access to quality HIV care. Low provider reimbursement in Medicaid and managed care delivery systems has the potential to discourage experienced physicians from treating patients with HIV infection and to undermine the quality of HIV care. In 2004, the IOM identified numerous barriers to HIV care Source: Institute of Medicine, Public Financing and Delivery of HIV/AIDS Care: Securing the Legacy of Ryan White, Chapter 4, “Barriers to HIV Care”, Washington DC: National Academies, 2005.

3. Do the IOM’s 2004 conclusions still hold? What is the status of the “Quilt”? What does the system of financing and care look like today? What barriers exist? What will health reform mean? HIV Care Today: “A Quilt with Many Holes”?

4. What do we know?

5. Federal Funding for HIV/AIDS Care by Program, FY 2010 (In billions) $13.2 billion Source: Kaiser Family Foundation Analysis of Data from OMB, 2010.

6. Federal Funding for HIV/AIDS Care: Mandatory & Discretionary, FY 2010 Mandatory: Medicaid Medicare FEHB Discretionary: Ryan White VA SAMHSA Other Mandatory (75%) Discretionary (25%) $13.2 Billion Source: Kaiser Family Foundation Analysis of Data from OMB, 2010.

7. Robust, recent estimates are not readily available HCSUS 1996 HIVRN 2002 Ranges from HCSUS & HIVRN: Medicaid: 38%-44% (including duals) Medicare: 17%-19% (including duals) Private:16%-31% Uninsured: 20%-28% Insurance Coverage of People with HIV/AIDS? Sources: Bozzette, et al. “The Care of HIV-Infected Adults in the United States.” NEJM, Vol. 339, No. 26. December, 1998; Fleishman JA et al., “Hospital and Outpatient Health Services Utilization Among HIV-Infected Adults in Care 2000-2002, Medical Care, Vol 43 No 9, Supplement, September 2005.; Fleishman JA, Personal Communication.

8. Robust, recent estimates are not readily available Glynn & Rhodes, 2003 50% of people living with HIV/AIDS estimated to be in care Teshale et al, 2003 55% of 15-49 year olds estimated to be eligible for HAART receiving HAART (15% in care, but not on HAART; 30% not in care) How Many People with HIV/AIDS are in Care? Sources: Teshale EH et al., “Estimated Number of HIV-infected Persons Eligible for and Receiving HIV Antiretroviral Therapy, 2003--United States”, Abstract #167, 12th Conference on Retroviruses and Opportunistic Infections, February 2005; Glynn MK and Rhodes P, “Estimated HIV Prevalence in the United States at the end of 2003.” Presentation at the 2005 National HIV Prevention Conference, June 14, 2005.

9. Medicaid Medicare Ryan White Private health insurance (individual, employer) Department of Veterans Affairs Community Health Centers High risk pools Pharmaceutical Access Programs (run by states and companies) Correctional system Multiple Sources of Care & Coverage for People with HIV/AIDS

10. Eligibility Pathways for People with HIV/AIDS, by Major Payer/Source Source: Kaiser Family Foundation

11. Medicaid Today • Nation’s principal safety-net health insurance program • Finances health & long-term care for 59 million low-income Americans • Pays for approximately 1 in 6 health care dollars • Federal/state program; combined spending in FY 2010 of $412 billion • Guaranteed entitlement to individuals & federal financing to states (funding matches need and cost of care) • Largest source of health coverage for people with HIV/AIDS in U.S. • Covers an estimated 200,000-240,000 • Federal spending on HIV care in FY 2010 estimated at $4.7 billion, state spending close to $4 billion • But must be both low income and “categorically” eligible • Variation by state in eligibility, benefits, and other aspects of program • Mandatory & optional eligibility categories and benefits • E.g., Rx and routine testing are optional – states must take them up Source: Kaiser Family Foundation; CMS.

12. Medicaid Eligibility Pathways for People Living with HIV/AIDS Source: Kaiser Family Foundation

13. Medicare Today • Federal health insurance program for elderly & disabled, covers 46 million • Medicare spending estimated at $515 billion in FY 2010 • Spending on HIV/AIDS estimated at $5.1 billion in FY 2010 • Covers an estimated one-fifth of people with HIV/AIDS • Program has parts A,B,C, D • Part A: Hospital, skilled nursing care, facility stays, home health, hospice (automatically provided if eligible) • Part B: Physician, outpatient services, preventive services, home health Part A eligibles may enroll) • Part C: Medicare Advantage (voluntary enrollment in private health • plan, such as HMO) • Part D: Prescription drug benefit; low income subsidies (voluntary enrollment) • HIV testing: New HIV screening policy as of December 8, 2009: annual volunteer routine screening for those at increased risk; voluntary screening for pregnant women during 3rd trimester and at labor (CMS Decision Memo CAG-00409N) Sources: Kaiser Family Foundation; CMS.

14. Medicare Eligibility Pathways for People Living with HIV/AIDS Source: Kaiser Family Foundation

15. Ryan White Today • Single largest federal program designed specifically for people with HIV in the United States • Estimated to reach more than half a million people w/HIV each year • Program has Parts A,B,C D (formerly, Titles I, II, III, IV) • Part A: Funding to cities (EMAs/TGAs) • Part B: Funding to states, including ADAP earmark • Part C: Funding to public/private organizations for provision of health services • Part F: Special Projects of National Significance (SPNS), AIDS Education & Training Centers (AETCs), Dental, Minority AIDS Initiative (MAI) • Payer of last resort; Discretionary program dependent on annual federal, state, local appropriations, funding support • HIV testing: Funds can be used to support diagnostic and laboratory tests “integral to the treatment of HIV infection and related complications” (HAB policy notice 07-02) Source: Kaiser Family Foundation; HRSA, HIV/AIDS Bureau

16. Department of Veterans Affairs • Largest single provider of HIV care in the U.S. • To date, nearly 64,000 Veterans with HIV have received care in VHA • In 2008, over 23,000 Veterans with HIV served, about 1 in every 250 Veterans in care • Number of Veterans with HIV in care relatively stable over past several years • Comprehensive care provided and management of population with high incidence of other health conditions and co-morbidities • Heart disease, diabetes, cancers, depression hypertension, • Hep C: one out of four Veterans with HIV • HIV testing: As of August 17, 2009, VHA policy that HIV testing is part of routine medical care; verbal informed consent sufficient, pre- and post-test counseling no longer mandated (VHA Directive 2009-036) Source: Kaiser Family Foundation; Department of Veterans Affairs.

17. Federally-Qualified Community Health Centers • Located in or serve a high need community (designated Medically Underserved Area or Population) • Provide comprehensive primary health care services as well as supportive services (education, translation and transportation, etc.) that promote access to health care • Provide services available to all with fees adjusted based on ability to pay. • FQHCs include: Community Health Centers, Migrant Health Centers, Healthcare for the Homeless, Public Housing Primary Care Programs, also FQHC look-alikes • People with HIV/AIDS served by CHCs in 2008 • 394,983 encounters • 87,509 patients • 653,466 HIV tests Source: Kaiser Family Foundation; HRSA, Health Center Uniform Data System.

18. What is the Current State of the Quilt?

19. Issue 1: Eligibility depends on who you are & where you live Source: Kaiser Family Foundation

20. Issue 2: Even if eligible, access depends on capacity of system Source: Kaiser Family Foundation

21. Issue 3: Even if eligible & system has capacity, other barriers exist Source: Kaiser Family Foundation

22. Variation Across the Country: Select Examples • Medicaid • SSI: 25 states ≤ 75% FPL for disabled • Low income parents: 34 states < 100% FPL (17 <50% FPL) • Childless adults: state needs waiver to cover; only 5 cover comparable to Medicaid (15 more limited) • Medically needy program: 34 states • Rx limits: 19 states • Private insurance protections • Rating limits: 18 states • Guaranteed Issue: 6 states (an additional 7 for some products) • High risk pools: 32 states • Ryan White • EMAs: 14 states (22 EMAs) • TGAs: 19 states (34 TGAs) • ADAP waiting lists (10 states) Source: Kaiser Family Foundation analysis; National Alliance of State and Territorial AIDS Directors.

23. The “Swiss Cheese Model” of Healthcare Financing & Delivery

24. The Size of the Gap That Needs to be Filled Varies by State STATE B STATE A Medicaid Program Medicaid Program

25. What should we expect from health reform?

26. Health Reform & Expansion of Access • Medicaid be expanded to all under age 65 with incomes up to 133% FPL as of 2014 (state option as of April 1, 2010) • Uniform minimum Medicaid eligibility threshold across states • Eliminates limitation that prohibits most adults without dependent children from enrolling in the program today, the HIV/AIDS “Catch-22” (though as under current law, undocumented immigrants not eligible) • Uninsured individuals with incomes above 133% FPL will obtain coverage through newly created state health insurance Exchanges • Medicare (elderly & under-65 disabled) • End to Medicare Part D drug benefit coverage gap (“doughnut hole” by 2019 • Allows ADAP payments to count toward true out-of-pocket (TrOOP) threshold used to determine eligibility for catastrophic coverage under Part D • Improves coverage of prevention benefits - beginning in 2011, no coinsurance or deductibles will be charged in traditional Medicare for preventive services that are rated A or B by the U.S. Preventive Services Task Force Source: Kaiser Family Foundation

27. Health Reform & Expansion of Access, continued • Private health Insurance • Requires guaranteed issue & renewability as of 2014 (health insurers prohibited from denying coverage for any reason, including health status, and prohibited from charging more based on health status and gender) • Establishes temporary national high-risk pool for those with pre-existing conditions prior to 2014 • Ends annual and lifetime limits on coverage • Young adults to remain on parent’s health insurance up to age 26, as of 2010 • Minimum coverage of prevention services, without cost-sharing, if rated A or B by USPSTF • Emphasis on Prevention • New Prevention and Public Health Fund to expand and sustain funding for prevention and public health programs (Initial appropriation in 2010) • Includes support for federal, state, community initiatives to use evidence-based interventions to address HIV-related health disparities Source: Kaiser Family Foundation

28. Looking Ahead • Access will improve for millions of Americans, including people with HIV/AIDS • New KFF study finds that Medicaid expansion will significantly increase number covered by the program and markedly reduce the uninsured in states across the country, with the federal government picking up majority of cost (May 26, 2010) • States with large uninsured populations today expected to see the biggest increases in Medicaid coverage • But implementation challenges & Not all will gain access • Coordination with existing programs in interim will be critical • Coverage of routine HIV screening uncertain • Role of Ryan White post-health reform will change