1. Health Care Reform Update and Advocacy Priorities Robert Greenwald Clinical Professor of Law Director, Center for Health Law and Policy Innovation of Harvard Law School November 2012

2. Successful Health Reforms Could End the HIV Epidemic in the U.S. Part 1: The Affordable Care Act: Overview of Where We Are and Where We are Going Part 2: Massachusetts as a Case Study of Successful Health Reform Implementation Part 3: Key Advocacy Priorities & Implementation Update Part 4: Steps for Ensuring Ongoing Success PRESENTATION OUTLINE

3. Part 1: The Affordable Care Act: Overview of Where We Are & Were We Are Going

4. Where We Are: Status Quo = Access to Care Crisis The Current Crisis 42-59% of low- income people living with HIV not in regular care Impossible to obtain individual insurance and few insured through employer system Medicaid/ Medicare are lifelines to care, but disability standard means they are very limited Demand for Ryan White care and services > funding 29% of people living with HIV uninsured

5. 2003200420052006200720082002 Sources: “Estimated Number of Persons Living with AIDS,” Centers for Disease Control and Prevention, http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2007report/table12.htm; Ryan White Appropriations History, Heath Resources and Services Administration, ftp://ftp.hrsa.gov/hab/fundinghis06.xls. Inflation calculated using http://www.usinflationcalculator.com; www.cdc.gov/hiv/surveillance/resources/reports/2009report/pdf/table16a.pdf; “Funding, FY2007-FY2010 Appropriations by Program, hab.hrsa.gov/reports/funding.html http://www.cdc.gov/hiv/topics/surveillance/resources/reports/2007report/table12.htm ftp://ftp.hrsa.gov/hab/fundinghis06.xlshttp://www.usinflationcalculator.com www.cdc.gov/hiv/surveillance/resources/reports/2009report/pdf/table16a.pdf Ryan White Program Not Keeping Pace with Increased Need Number of People Living with AIDS in the US vs. Ryan White Funding (adjusted for inflation)

6. ACA Implementation Must Address Engagement and Retention in Quality Health Care National HIV/AIDS Strategy calls for: Increasing HIV screening and improve linkages to care Increasing retention in care rates Closing the gap between those who need antiretrovirals (ARVs) and those who are on ARVs Providing needed care and support services to increase treatment adherence and number of persons with undetectable viral load rates

7. WHERE WE ARE GOING ACA Reforms Include New Responsibilities Mandates Individual Mandate Penalty - $695 or 2.5% of income, with some hardship exemptions Employer Mandate Penalty – Employers (ER) with more than 50 employees (EE) who don’t provide insurance and who have any EE receiving an exchange subsidy subject to $2,000 penalty per full- time EE beyond the first 30 EEs. Taxes Tax credits for small businesses 0.9% increase for individuals with income above $200,000 and couples above $250,000 (plus a 3.8% additional tax on unearned income) Cadillac Tax of 40% of value of plan if plan costs more than $10,200 for individual and $27,500 for families

8. ACA Expands and Improves Medicaid Expands Eligibility (Now optional, so state-by-state) – Starting in 2014, disability requirement is eliminated for most people with income up to 133% FPL (~$14K for an individual/~$29K for family of four) Improves Reimbursement – Enhances reimbursement for primary care providers in 2013- 2014 (up to Medicare reimbursement rate) Streamlines Application and Enrollment (no wrong door application process) Includes free preventive services (optional)

9. ACA Essential Health Benefits For All Newly Eligible Medicaid Beneficiaries For Most New Individual and Small Group Private Insurance Beneficiaries Includes a Comprehensive Essential Health Benefits Package Ambulatory services Emergency services Hospitalization Maternity/newborn care Mental health and substance use disorder services Prescription drugs Rehabilitative and habilitative services Laboratory services Preventive and wellness services and chronic disease management Pediatric services

10. Gives states the option to provide cost-effective, coordinated and enhanced care and services to people living with chronic medical conditions* States are eligible for planning grants and increased federal support – 90% FMAP for first two years of the program Reduces inpatient and emergency room costs while improving health outcomes through both enhanced care coordination and service integration – high intensity care/service management, integrated physical and behavioral health services, health promotion, patient and family support, and prioritized housing * Successful advocacy led to inclusion of people living with HIV/AIDS Supports Enhanced & Coordinated Care Through Medicaid Health Home Program

11. Increases Access to Medicare Drug Coverage 50% discount on all brand-name prescription drugs Part D “donut hole” phased-out by 2020 AIDS Drug Assistance Program (ADAP) contributions now count toward copayment obligations

12. Cannot be denied insurance because of HIV or other health condition, even if you don’t currently have coverage (2014) Health plans cannot drop people from coverage when they get sick (in effect) No lifetime limits on coverage (in effect) No annual limits on coverage (2014) Reforms Private Insurance and Reduces Discriminatory Insurance Practices

13. In 2014, consumer-friendly Exchanges to purchase private insurance – Certify “qualified health plans” that will compete for consumers – Educate consumers by establishing call center, website, navigators (at least one non-profit), premium calculator – Conduct or contract eligibility and enrollment through streamlined “no wrong door” application process – Sets standards for provider networks and is required to contract with “sufficient number and geographic distribution of essential community provides” Federal subsidies for people with income between 100-400% FPL (200% FPL = ~$44K for an individual/~$89K for family of four) Plans cannot charge higher premiums based on gender or health Plans must include Essential Health Benefits Promotes Access to Private Insurance through State-Based Exchanges

14. The optional Basic Health Plan is likely to be the same as a state’s current Medicaid plan and could offer several important advantages: Provides increased continuity of care as residents go in and out of Medicaid due to income fluctuations Generally more affordable (lower premiums & cost sharing than on the Exchange – state receives additional federal payments – up to 95% of subsidies the consumer would’ve received on exchange) Consumers are not responsible for paying back tax credits if income fluctuates Includes legal immigrants with incomes below 133% FPL who are barred from Medicaid because of 5 year ban Allows States to Create a “Basic Health Plan” for People with Income Between 133%-200% FLP

15. Prevention and Public Health Fund –$500 million in 2010 and increasing annually up to $2 billion in 2015 for community prevention initiatives Community Health Center Expansion –$11 billion in funding for the operation, expansion and construction of health centers over the next five years Health Workforce Investments –Expands primary care workforce –Expands National Health Service Corps Care Coordination Investments –Center for Medicare and Medicaid Innovation (CMMI) Invests in Prevention and Wellness, Access to Care, and Innovation Invests in Prevention and Wellness, Access to Care, and Innovation

16. Where We Are Going: Great Potential But Successful Implementation Will Decide Improves Medicaid: Expands eligibility (state option); provides essential health benefits (EHB) (federal and state regulations); improves reimbursement for PCPs (only 2013-14); includes health home (state option); allows for free preventive services (state option for Medicaid). Creates Private Insurance Exchanges: Provides subsidies up to 400% FPL (federal and state regulation); eliminates premiums based on health/gender; provides EHB (federal and state regulation); supports outreach, patient navigation and enrollment (federal and state regulation); and allows for Basic Health Plan (state option). Only with Successful Medicaid Expansion and Exchange Development Will We Dramatically Improve Health Outcomes and Meet Prevention Goals

17. Part 2: Massachusetts as a Case Study of Successful Health Reform Implementation

18. Massachusetts: A Post Health Care Reform State in a Pre-Reform Country Expanded Medicaid coverage to pre-disabled people living with HIV with an income up to 200% FPL (2001) Enacted private health insurance reform with a heavily subsidized insurance plan for those with income up to 300% FPL (2006) Protected a strong Medicaid program for “already” & “newly” eligibles Re-tooled Ryan White Program – ADAP funding largely spent on insurance not Rx (2006) – Ryan White Program 75/25 rule waived to allow for increased support of essential support services (2007) – Maintaining unrestricted formulary and 500% FPL eligibility (2006 - present) The MA case study provides insight into how health reforms and Ryan White Program work together to meet NHAS Goals

19. Massachusetts’ Successful Reform Implementation Improves Health Outcomes and Meets NHAS Goals Source: Massachusetts and Southern New Hampshire HIV/AIDS Consumer Study Final Report, December 2011, JSI Research and Training, Inc. Note: MA Outcomes N = 1,004 Source: Cohen, Stacy M., et. al., Vital Signs: HIV Prevention Through Care and Treatment — United States, CDC MMWR, 60(47);1618-1623 (December 2, 2011); Note: National Outcomes HIV-infected, N = 1,178,350; HIV-diagnosed, n=941,950

20. MA Reform Demonstrates Successful Implementation Reduces New Infections and AIDS Mortality Between 2006 & 2009, Massachusetts new HIV diagnoses rates fell by 25% compared to a 2% national increase Current MA new HIV diagnoses rates have fallen by 46% Between 2002 & 2008, Massachusetts AIDS mortality rates decreased by 44% compared to 33% nationally Sources: MA Dept of Public Health, Regional HIV/AIDS Epidemiologic Profile of Mass: 2011, Table 3; CDC, Diagnoses of HIV infection and AIDS in the United States and Dependent Areas, 2010, HIV Surveillance Report, Vol. 22, Table 1A; CDC, Diagnoses of HIV infection and AIDS in the United States and Dependent Areas, 2008, HIV Surveillance Report, Vol. 20, Table 1A.

21. MA Reform Demonstrates Successful Health Reform Implementation Reduces Costs Source: MA Office of Medicaid, data request Massachusetts cost per Medicaid beneficiary living with HIV has decreased, particularly the amount spent on inpatient hospital care Massachusetts DPH estimates reforms reduced HIV health care expenditures by ~$1.5 billion in past 10 years

22. A Post-Reform State Needs the Ryan White Program (RWP) to Meet NHAS Goals YEARFull PayCo-PayPremiumsTotal CostEnrolled FY05 $ 9,756,201$ 1,839,807 $ 6,112,132 $ 17,708,142 4738 FY11 $ 4,467,727$ 3,175,917$ 10,990,818 $ 18,634,462 7009 The RWP is essential to reducing gaps in care and affordability to meet NHAS retention in care and viral suppression goals ADAP reduces barriers to HIV medications -Individuals with income of $16,000 (150% FPL) cannot afford $3,333 -Families with income of $33,000 (150% FPL) cannot afford $6,666 RWP provides essential care - dental, vision and behavioral health… RWP provides essential services - case management, transportation, food and nutrition…

23. Lack of Proper Planning and Oversight Results in Disruptions in Care (Moving Us in the Wrong Direction) Failed to ensure that the health benefits package met HIV standard of care Failed to integrate HIV providers and models of care delivery Failed to consider Ryan White Program coordination and “payer of last resort” provisions California’s Ineffective Implementation Undermines NHAS Goals Both federal and state officials largely failed to account for people living with HIV who became newly eligible through reform

24. Part 3: Key Advocacy Priorities & Implementation Update

25. Success will depend upon strong federal regulations & state regulations to the extent the federal government falls short Exchange Development Comprehensive Essential Health Benefits (EHB) for Medicaid and Exchanges Limits on / Regulation of Utilization Management Outreach, navigation and enrollment systems Anti-discrimination protections and enforceable appeals processes Step 1. Federal and State Regulations to Promote Retention in Care and HIV Standard of Care Action Needed to Ensure Success:

26. Exchange Update: Where the States Are Three choices: State-based, Partnership or Federally Facilitated Exchange and states must submit their exchange blueprint to HHS by 11/16/12

27. Federal guidance suggests (at least for private plans): Insurers may have flexibility to substitute scope and level of benefits as long as “actuarially” equivalent to benchmark plan Coverage of “one drug per class” could meet EHB Rx requirement Plans may have discretion over utilization management Flexibility for most states likely means bare bones plans No current mandate that EHB must meet standards of care for HIV State variation and disparities continue Essential Health Benefits Implementation Update EHB will depend upon final federal regulations & state regulations to the extent the federal government falls short

28. ACA’s Essential Health Benefits Mandates §1937 Benchmark Mandates (applies to Medicaid) ACA Non- Discrimination Mandates Regulations that Ensure Medicaid and Exchanges Successfully Provide HIV Standard of Care ACA is the Law of the Land: Requires Comprehensive EHB Despite Resistance in Some States + + = Access to care, treatment and services that reflect national standards = Outreach & patient navigation services successfully integrating people with HIV Sufficient provider networks and unlimited access to specialists Unlimited access to necessary medications Case management, care coordination, treatment adherence, & counseling Comprehensive mental health & substance abuse services Preventive & wellness services

29. Step 2: Success Requires High Level Officials at HHS/CMS and in States Collaborating on Reforms with HIV Consumers and Providers Guidance/Support to states to promote optional programs: Expansion of Medicaid, Health Home, Preventive services, Basic Plan Guidance/Support to states to maximize potential of mandatory programs: Medicaid, Exchanges, and RWP coordination Inclusion of AIDS service providers as navigators for outreach, enrollment, and retention efforts Technical Assistance: Workforce development Integration of people living with HIV and their providers Oversight: Streamlined HIV measures and reporting requirements (to monitor & manage the epidemic) Action Needed to Ensure Success:

30. ACA Medicaid Expansion Update CMS has said there is no deadline for states to opt in – But 100% federal match only applies 2014 to 2016 States can opt out after expanding at any time States required to maintain eligibility & benefit levels until exchange is fully operational in 2014 (“MOE requirement”) States are pushing for partial expansion (e.g., up to 100% FPL) – CMS has said it will not entertain such requests Now that the elections are over….. SCOTUS decisions turns the Medicaid expansion into a state-by-state advocacy issue

31. Federal government pays 100% of expansion costs for 2014- 2016 and gradually reduced to 90% in 2020 and beyond Other reforms (e.g., DSH payment reductions) make it difficult not to expand because of the increased pressure on hospitals without increased revenue from insured patients Uptake may be slow, but states have generally come around to Medicaid and CHIP expansions Will Texas want its residents’ federal tax dollars supporting access to care in NY, CA and MA? Many Reasons to Opt In

32. Step 3: Protect Medicaid: Shifting Costs to States Threatens NHAS Access to Care Goals Currently, Medicaid is an entitlement program jointly funded by federal and state governments (if you’re eligible, you’re in) Capping federal spending for Medicaid will shift costs to already cash-strapped states States will be unable to respond to increased need for services given current economic downturn and will likely cut services and eligibility Action Needed to Ensure Success:

33. Step 4. Address the Ryan White Program Challenge: Ongoing Funding Required to Meet NHAS Goals It is too soon to discuss Ryan White Program cost-offsets Premature to discuss cost-offsets or destabilization of HIV care, treatment, and disease management services Success in addressing HIV epidemic requires ongoing support of HIV-specific expertise and experience Post 2014, we need to evaluate ongoing ACA integration of HIV care, treatment and services and re-tool the Ryan White Program to address gaps in care and affordability Action Needed to Ensure Success:

34. Part 4: Steps for Ensuring Ongoing Success

35. #1 Build Connections with State Medicaid Agency, Insurance Regulators, and Exchange Leadership Identify allies and formalize connections – get them to understand the needs of people living with HIV Review Medicaid expansion and Exchange application and all regulations and guidance and prepare comments Understand plan types and coverage scopes to assist clients Train all providers about Medicaid and Exchange eligibility and enrollment processes, co-payment obligations, and recertification requirements Integrate ADAP into “no wrong door” component of health reform Stretch yourself or we will be left behind!

36. #2 Educate Consumers and Providers Develop fact sheets/literature about changing health care landscape Engage consumer advisory boards and planning bodies Identify expertise to support health insurance navigation for HIV+ residents Ensure readiness of the provider community—clinical and non-clinical Develop response plan for populations that will remain ineligible for coverage under health reforms

37. #3 Assess Your Role Post Health Care Reform Integrate with larger providers that have diverse portfolios of services and funding Grow to expand capacity/mission and decrease reliance on Ryan White Program that will likely not be able to provide sufficient ongoing support Go forward as is, but understand that overtime you may not be able to exist as a free-standing disease-specific organization without diversified services and funding

38. 2012 Elections = Watershed for Health Reform… but everything is not won or lost 2012 Elections = Watershed for Health Reform… but everything is not won or lost Will the ACA be fully implemented? Will deficit reduction be achieved responsibly? Will our health care safety nets (Medicaid, Medicare, Ryan White Program) be preserved? Control of the White House Control of Senate Control of House

39. Available Resources www.HIVHealthreform.org Treatment Access Expansion Project, www.taepusa.orgwww.taepusa.orgAIDS United, www.aidsunited.orgwww.aidsunited.org30 for 30 Campaign, www.facebook.com/30for30www.facebook.com/30for30Health Care Reform Resources Kaiser Family Foundation, www.kff.orgwww.kff.org Families USA, www.familiesusa.orgwww.familiesusa.org Community Catalyst, www.communitycatalyst.orgwww.communitycatalyst.org Healthcare.gov, www.healthcare.govwww.healthcare.gov