Access to Care for Persons Living With or At Risk for Hepatitis C: Challenges and Recommendations for Improvement Adapted from the State Healthcare Access Research Project (SHARP) Massachusetts State HCV Report Malinda Ellwood, JD Health Law and Policy Senior Fellow Center for Health Law and Policy Innovation of Harvard Law School July 25, 2013 Funded by Bristol- Myers Squibb with no editorial review or discretion.

SHARP is an initiative examining Massachusetts’ (MA) capacity to meet the healthcare needs of people living with hepatitis C (HCV) SHARP research to identify successes, challenges, and opportunities for meeting HCV care and treatment needs in MA included: o meeting with state government officials to review state epidemiological data and state-run HCV testing, care, treatment and prevention initiatives; o facilitating community groups, meetings and individual interviews with people living with HCV and their health and support service providers; and o conducting independent research on the epidemic nationally and in MA SHARP research led to the creation of a comprehensive MA HCV SHARP report, that sets forth recommendations for addressing the care, treatment and support services needs of individuals living with or at risk for HCV The State Healthcare Access Research Project (SHARP) on HCV in Massachusetts

Challenges in HCV Prevention and Testing Pervasive stigma, as HCV is largely associated with IDU Lack of education and awareness, particularly among: o Those who are unaware they are infected and were once at risk, largely baby-boomers, many of whom may not be presenting at integrated risk- based HIV/STD testing and referral sites o African Americans are disproportionately affected by HCV o Those currently at risk, including both adults and youth o Primary care providers Lack of funding for prevention, testing (including rapid testing) and surveillance

Recommendations to Increase HCV, Outreach, Prevention and Testing Programs Expand outreach, testing and surveillance, including incorporation of new technologies such as rapid testing o Increase peer-based strategies for educating IDUs o Separate, broad-based strategies needed for reaching non-IDU communities o Outreach should also occur through non-medical community groups, such as Faith –Based organizations Increase youth education, including increased engagement/collaborative efforts through state Departments of Education Target baby-boomer screening through implementation of the new CDC and USPSTF age-based HCV screening guidelines in primary care settings and/or through use of electronic health records o Most private insurers (and Medicaid plans for the newly eligible in expansion states) must cover testing for individuals at risk for HCV, including those in the baby-boomer generation, without cost-sharing o There is also an incentive in the ACA (increased federal $) for existing state Medicaid programs to similarly cover USPSTF recommended services without cost-sharing Increase behavioral health program collaboration with HCV prevention and testing initiatives

Challenges in Linkage to Care and Treatment Lack of data on linkage to care: difficulties in tracking individuals from testing sites to care and treatment Lack of HCV education among individuals who know their status but do not know next steps to take and/or the importance of harm reduction Lack of health insurance to pay for treatment African Americans are more likely to be uninsured than the general population Even for those who do have health insurance, high levels of cost-sharing for anti-viral drugs Fear of side effects from existing treatment regiments (both among those at risk and those who are aware of their infection) Additional barriers can exist for individuals living with past or current substance use disorders and/or mental illness: Some providers make decisions not to refer individuals to treatment, require varying periods of sobriety for initiating treatment, strictly apply standards relative to missed appointments and adherence, and/or don’t know how, or don’t want to, treat IDUs

Recommendations to Increase Linkage to Care and Treatment Take advantage of the ACA to increase access to insurance and cost-sharing subsidies o Urge every state to expand Medicaid o Urge existing state Medicaid programs to cover HCV testing without cost-sharing o Ensure new Essential Health Benefits (EHB) packages meet care and treatment needs of individuals living with or at risk for HCV o Review drug formularies for coverage of necessary HCV treatment drugs, as well as inclusion of behavioral health services o Culturally appropriate outreach, education and enrollment, particularly to vulnerable populations, will be critical Work with medical schools to increase provider knowledge of HCV as well as cultural competency Increase availability of peer support for individuals living with HCV Increase availability of integrated behavioral health and HCV treatment programs Create statewide and/or local HCV strategic plans, and include the creation of viral hepatitis consumer advisory boards

Challenges in HCV Care and Treatment Delivery Current anti-viral treatments have had lower rates of success among African Americans compared to the general population Lack of adequate support services for persons with hepatitis C undergoing treatment, including food, housing, and case management o African Americans are disproportionately impacted by poverty, food insecurity (hunger), and homelessness Not enough treatment providers, and not enough behavioral health providers (particularly for youth) Provider Challenges: high level of care coordination required for treatment o Providing adherence support o Management of anti-viral medications o Administrative work/obtaining and renewing prior authorizations o Lack of adequate funding for these services and/or case management

Recommendations to Improve HCV Care and Treatment Delivery New medications on the horizon will likely provide treatment options with far fewer side effects and more successful outcomes among all populations, but it will be important to ensure African Americans are included in clinical trials Create supportive services programs for low-income individuals living with HCV Explore new and existing opportunities for providing coordinated, integrated HCV care through national and state payment and care delivery reform o Tele-health models such as ECHO o Increase reimbursement for care coordination/case management/peer support services, including development of third-party reimbursement for tele-health initiatives o Patient-centered medical homes, Medicaid Health Homes

Opportunities to Provide HCV Testing and Treatment Through New Coordinated Care/Delivery Reform Initiatives Examples of new care delivery reform initiatives: goal is to improve quality of care while reducing costs; many initiatives also have a focus on integrating behavioral health and primary care o Medicaid Health home services for Medicaid recipients with chronic illnesses (For example- Oregon includes HCV as an eligible condition) o Dual Eligibles projects /Center for Medicare and Medicaid Innovation (CMMI) o Integrated behavioral health care initiatives through the Substance Abuse and Mental Health Services Administration (SAMHSA) These care delivery reform initiatives are opportunities to: 1.Improve care for individuals living with HCV 2.Offer HCV testing 3.Leverage new funding sources for community based organizations that provide supportive services for individuals living with or at risk for HCV

Resources Viral Hepatitis State Healthcare Access Research Project (SHARP) Massachusetts State HCV Report o Full report: o Executive Summary: 7.pdf 7.pdf National Viral Hepatitis Roundtable (NVHR): o Hepatitis and the ACA (webinar slides and recording): content/uploads/2013/06/hep_slides_final.pdfhttp:// content/uploads/2013/06/hep_slides_final.pdf National Association of State and Territorial AIDS Directors (NASTAD)/Viral Hepatitis: Centers for Disease Control (CDC)/Know More Hepatitis: ACA/Health Care Reform Treatment Access Expansion Project (TAEP), HIV/Hepatitis and Health Care Reform, Healthcare.gov, Families USA Community Catalyst Center for Consumer Insurance Information and Oversight (CCIO): ACA rules and regulations:

Select Resources on Coordinated Care/Healthcare Delivery Reform Patient Centered Medical Homes: NCQA PCMH certification programs: ‘ Agency For Healthcare Quality and Research (AHRQ), Patient –Centered Medical Home Research Center: Medicaid Health Homes- Resources from the Centers for Medicare and Medicaid Services (CMS): Overview: and-Support/Integrating-Care/Health-Homes/Health-Homes.htmlhttp://medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Services- and-Support/Integrating-Care/Health-Homes/Health-Homes.html Medicaid Health Home Information Resource Center: Center/Medicaid-State-Technical-Assistance/Health-Homes-Technical-Assistance/Health-Home- Information-Resource-Center.htmlhttp://medicaid.gov/State-Resource- Center/Medicaid-State-Technical-Assistance/Health-Homes-Technical-Assistance/Health-Home- Information-Resource-Center.html Other Health Homes/Delivery System Reform Resources: Families USA, Health system reform generally: National Academy for State Health Policy (NASHP),Medical Home Resource Center: Center for Medicare and Medicaid Innovation (CMMI): Substance Abuse and Mental Health Services Administration (SAMHSA) /Health Resources and Services Administration (HRSA) Primary and Behavioral Healthcare Integration Initiative: State Innovation Models:

Contact Information Malinda Ellwood, JD Health Law and Policy Senior Fellow