Improving Accessing to HIV Care through Health Care Reform Ryan White All Grantee Meeting November 28, 2012 Robert Greenwald, Treatment Access Expansion Project Andrea Weddle, HIV Medicine Association Anne Donnelly, Project Inform

Learning Objectives Participants will be able to describe the latest status of health care reform, particularly the Medicaid expansion, and evaluate how reforms may affect access to HIV care. Participants will be able to identify recommendations from California providers and advocates for effectively transitioning uninsured people with HIV into health care coverage. Participants will be able to describe key reform issues relevant to HIV medical providers.

PRESENTATION OUTLINE Part 1: Where We Are, Where We Are Headed Part 2: Federal Implementation Update Part 3: Keys to Success: Lessons Learned from California

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

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) 2002 2003 2004 2005 2006 2007 2008 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

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

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

Massachusetts as a Case Study of Successful Health Reform Implementation

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

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

MA Reform Demonstrates Successful Implementation Reduces New Infections & 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.

MA Reform Demonstrates Successful Health Reform Implementation Reduces Costs 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 Source: MA Office of Medicaid, data request

A Post-Reform State Needs the Ryan White Program (RWP) to Meet NHAS Goals YEAR Full Pay Co-Pay Premiums Total Cost Enrolled 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…

Lack of Proper Planning and Oversight Results in Disruptions in Care California’s Ineffective Implementation Undermines NHAS Goals Lack of Proper Planning and Oversight Results in Disruptions in Care (Moving Us in the Wrong Direction) Both federal and state officials largely failed to account for people living with HIV who became newly eligible through reform 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

Part 2: ACA Federal Implementation Update

30 Million Newly Insured by 2022 Medicaid Expansion <133% FPL Exchange Coverage >133% FPL 25 million

Undocumented Immigrants Left Out Barred from state-based exchanges Not eligible for non-emergency Medicaid Eligible for restricted “emergency” Medicaid Eligible for services through community health centers and/or safety-net providers

Key Implementation Issues Medicaid Expansion Essential Health Benefits Exchanges Affordability

Medicaid Expansion Update Supreme Court ruled states can’t be penalized for not participating No deadline for states to opt in 100% federal match applies 2014 to 2016 States required to maintain eligibility for enhanced rates (“MOE requirement”) CMS considering additional flexibility Only est. 1/3 eligible for subsidies in the exchange

Medicaid Expansion: Where Do the States Stand? Center on Budget and Policy Priorities. November 2012.

Medicaid Expansion: Estimated Increase in Enrollment by State

Medicaid Expansion: Estimated Increase in State Spending

Income Status of Individuals Who Receive Ryan White-funded Services

Medicaid Primary Care Rate Increase - 2013 & 2014 Internists, family medicine and pediatricians and NPs/PAs they supervise eligible for enhanced rates for primary care services Specialists trained in IM, FM, and Pediatrics, including infectious diseases, eligible Payment will be equal to provider charge or Medicare rate, whichever is lower

HIV Medical Homes Resource Center Medicaid Health Homes For Medicaid beneficiaries with 2 or more chronic conditions HIV health homes - Oregon and New York Supports comprehensive care management, care coordination, patient and family support…. States develop reimbursement models HIV Medical Homes Resource Center http://www.careacttarget.org/mhrc

The Role of the Exchanges: Federal Rules Regulated market places to purchase insurance No denials based on health status or higher fees based on health or gender Certify “qualified health plans” “Active” or “passive” purchaser Educate consumers Must establish call center, website, navigators (at least one nonprofit group), premium calculator Conduct or contract eligibility and enrollment Streamlined “no wrong door” application process Set standards for provider networks Required to contract with “sufficient number and geographic distribution of essential community providers” Ryan White providers identified as essential

State Exchange Activity Deadline extended: Dec 14th All States Will Have Exchanges!

Get Involved in Your State State Contacts: http://www.ncsl.org/issues-research/health/state-implementation-entities-to-implement-the-aca.aspx Federal-run Exchange - Contact CMS Regional Office: http://www.cms.gov/About-CMS/Agency-Information/RegionalOffices/RegionalMap.html

Ryan White Core Services vs. EHB ACA “Essential Health Benefits”* Ambulatory patient services Emergency services Hospitalization Maternity and newborn care Mental health and substance use disorder services, including behavioral health treatment Prescription drugs Rehabilitative and habilitative services and devices Laboratory services Preventive and wellness services and chronic disease management Pediatric services, including oral and vision care Ryan White Core Services Ambulatory and outpatient care AIDS pharmaceutical assistance Mental health services Substance abuse outpatient care Home health care Medical nutrition therapy Hospice services Home and community-based health services Medical case management, including treatment adherence services Oral health care (not an EHB)

Essential Health Benefits States selected “benchmark” plan to set coverage standard for 10 EHB categories + EHB applies to Medicaid expansion but with additional protections (due 2013) Comment on your state’s selection by Dec. 26th: http://cciio.cms.gov/resources/data/ehb.html

More EHB Rules Drug coverage equals one drug per class or the same number of drugs in a class covered by the benchmark plan (whichever is higher) Lifetime and annual coverage limits barred Adult dental and long-term/custodial nursing home care benefits excluded from EHB Mental health parity applies

What to Comment On Would the service limits impede access to necessary HIV care? Will all or nearly all of the ARVs be covered? Will people with HIV have access to chronic disease management?

New Preventive Services Benefits – Effective in New Plans August 2012 HIV screening and counseling Well-woman visits Screening for gestational diabetes HPV testing for women 30 years and older STI counseling FDA-approved contraception methods and contraceptive counseling Breastfeeding support, supplies, and counseling Domestic violence screening and counseling

What’s Covered? What’s Not Covered? Affordability Exchanges 100% FPL up to 400% FPL Sliding scale premium credits Adjusted out of pocket max 100 to 250% FPL Cost sharing subsidies Medicaid <100% FPL – none 100 -150% FPL No premiums Up to 10% cost or nominal depending on service What’s Covered? What’s Not Covered?

ANNUAL OUT OF POCKET MAXIMUM*: $2,083 Subsidy Calculator from www.kff.org *In addition to premium payments

Part 3: Keys to Success: Lessons learned from California

State HCR Advocacy and Planning Federal government develops the framework States operationalize Will vary state by state Both advocacy and planning are essential In every state, including those resisting HCR Identifying and collaborating with allies The timeline is very short Lots of decisions being made now More questions than answers but need to move ahead

Top Three State Advocacy Priorities Full Medicaid Expansion with an adequate benefits package that meets the needs of people with HIV Provider networks include HIV providers Ensure continuity of care provisions Ensure adequate formulary – states can have more than one benefits package Plans offered through the Exchange meet HIV prevention, care, and treatment needs Formulary protections Adequate provider networks Continuity of care provisions Exchanges are well designed and implemented Active vs. “Organizer” No wrong door for application - HIV information is integrated (very difficult) Navigators have some HIV experience Medicaid/Exchange plan networks and benefits are aligned

Implementation & Planning Priorities What changes will/are likely to occur in 2014 in your state? What type of transitions will these changes bring? Movement to Medicaid? Movement to Exchanges? People currently on PCIP? How will communication, education, and assistance be provided? How will your state/local infrastructure serve the insured and uninsured populations (RW and non – RW services)? Community Health Centers Private physicians Public hospitals (DSH, county, state) HIV System of Care Non-physician providers Community-based organizations University hospitals

Lessons Learned – State Advocacy & Planning General Overview We have to start now We can’t do this alone essential to partner with other advocates & state administrators There will not be a road map Can’t wait for state specific guidance from HRSA, CMS, CCIIO, HHS etc. More questions than answers There are multiple and interrelated decision “tables” The HIV community is not likely to be invited It may not be clear where decisions are being made People planning likely to have little knowledge of HIV Will require innovation in roles and programs Can’t necessarily rely on old fixes, i.e. RW may not be able to fill all gaps

1) Ensure a voice for HIV at the state level Advocacy: Identify: key decisions and decision makers Is anyone with HIV expertise participating? Identify allies and make connections Implementation: No one agency in charge Need for leadership from state HIV entities Probably not charged, staffed or funded to do the work Key: Connections between Medicaid services, state HIV specific offices, Exchanges and insurance regulators Can be informal; stakeholder and/or work groups Requires new roles and ways of working together In some states there is limited interaction; need collaboration *

2) Identify and plan for gaps in coverage What services will not be offered under new coverage, i.e. vision & dental? Peer outreach, linkage and care engagement services What populations are left out of health care reform and how will they obtain coverage? Undocumented people: are there sufficient Ryan White services? can people access quality HIV care in community health clinics? what do state programs cover? Recent immigrants: who will need additional assistance to purchase in the Exchange? is your state considering a Basic Health Plan? Identify and plan for service limitations Is the case management in new programs sufficient for PWHA? What exactly will be covered under a managed care capitated rate or a medical home?

How Will Ryan White Integrate Into New Systems? (Payer of Last Resort) Mental Health & Substance Use Treatment Will there be limits on the number of visits offered in Medicaid and private plans? Is substance use treatment appropriate and sufficient for your population? Where and how can RW funds wrap around services? Are current providers able to bill both new systems and RW? Case management What will Medicaid cover? Is it sufficient for your population? Should case management services be co-located with clinical services? Will case management include referral services to food pantry or Food Stamps enrollment assistance, housing and other essential services? Do those services need to be co-located with clinic services and/or medical homes?

3) Identify and plan to fill gaps in affordability Insurance premium and co-pay assistance

4) Prepare Ryan White Systems ADAP must be able to wrap around premiums and other out of pocket costs Waiver from the 75/25 rule What new and/or expanded services will be needed, i.e more benefits counselors, navigation & legal assistance? What services need to be co-located with clinics, which don’t? Massachusetts ADAP Expenditures by Category Fiscal Year Full Pay Co-pay Premiums FY 05 $9,756,201.76 $1,839,807.23 $6,112,132.85 FY 10 $4,635,751.00 $2,930,016.65 $9,320,425.00

5) Ensure Safe Transitions No one agency or group in charge of transitions Develop effective communications/education network Most HIV positive people and providers look to HIV specific entities for information Develop materials and training for those assisting clients in transitions – ensure there is sufficient capacity for assistance Ensure medical and non-medical providers are engaged in new systems of care Ensure strong continuity of care provisions in Medicaid and plans under Exchange, including access to drugs and ancillary services Plan for delays in enrollment / eligibility determination & churning between systems – fill gaps Notes: Based on Patients with HIV Attending Medical Offices Participating in HIVRN; N=19,235. Medicaid includes those with Medicare coverage. Source: Data from K. Gebo and J. Fleishman, in Institute of Medicine, HIV Screening and Access to Care: Exploring the Impact of Policies on Access to and Provision of HIV Care, 2011. Excludes 8% “unknown” coverage.

6) Role of Local Communities Planning for health reform at the local level Infrastructure of ASOs to handle insured client base? Connections to broader care systems to ensure uninterrupted access to care? Community health centers Safety net providers Medicaid Individual transition planning and assistance for most vulnerable? Engagement in education and training in new systems to provide assistance to clients? Funding decisions aimed at outreach for testing, linkage, engagement and retention in care?

Resources www.statereforum.org Health Access www.health-access.org Center for Budget and Policy Priorities www.cbpp.org Treatment Access Expansion Project – www.taepusa.org Families USA – www.familiesusa.org National Health Law Program – www.nhelp.org

Health Care Reform Planning “If we wait for governments, it’ll be too little, too late. If we act as individuals, it’ll be too little. But if we act as communities, it might just be enough, just in time.” Transition network *

Contact Us Anne Donnelly, Project Inform Ph 415.558.8669x208 adonnelly@projectinform.org Robert Greenwald, Treatment Access Expansion Project Ph (617) 390-2584 rgreenwa@law.harvard.edu Andrea Weddle, HIV Medicine Association Ph (703) 299-0915 aweddle@hivma.org