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.
The State Healthcare Access Research Project (SHARP) on HCV
in Massachusetts
• 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
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 riskbased 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:
http://www.law.harvard.edu/academics/clinical/lsc/SHARP_HCV_Massachusetts_June13.pdf
o Executive Summary:
http://www.law.harvard.edu/academics/clinical/lsc/Executive_Summary_SHARP_HCV_MA_Final57.pdf
• National Viral Hepatitis Roundtable (NVHR): http://nvhr.org/
o Hepatitis and the ACA (webinar slides and recording): http://www.hivhealthreform.org/wpcontent/uploads/2013/06/hep_slides_final.pdf
• National Association of State and Territorial AIDS Directors (NASTAD)/Viral Hepatitis:
http://nastad.org/viral_hepatitis/default.aspx
• Centers for Disease Control (CDC)/Know More Hepatitis: http://www.cdc.gov/knowmorehepatitis/
ACA/Health Care Reform
• Treatment Access Expansion Project (TAEP), www.taepusa.org
• HIV/Hepatitis and Health Care Reform, www.HIVHealthReform.org
• Healthcare.gov, www.healthcare.gov
• Families USA www.FamiliesUSA.org
• Community Catalyst www.CommunityCatalyst.org
• Center for Consumer Insurance Information and Oversight (CCIO): ACA rules and regulations:
http://www.cms.gov/CCIIO/Resources/Regulations-and-Guidance/
Select Resources on Coordinated Care/Healthcare Delivery Reform
Patient Centered Medical Homes:
•
NCQA PCMH certification programs:
http://www.ncqa.org/Programs/Recognition/PatientCenteredMedicalHomePCMH/PCMH2.aspx ‘
• Agency For Healthcare Quality and Research (AHRQ), Patient –Centered Medical Home Research
Center: http://www.pcmh.ahrq.gov/portal/server.pt/community/pcmh__home/1483
Medicaid Health Homes- Resources from the Centers for Medicare and Medicaid Services (CMS):
• Overview: http://medicaid.gov/Medicaid-CHIP-Program-Information/By-Topics/Long-Term-Servicesand-Support/Integrating-Care/Health-Homes/Health-Homes.html
• Medicaid Health Home Information Resource Center: http://medicaid.gov/State-ResourceCenter/Medicaid-State-Technical-Assistance/Health-Homes-Technical-Assistance/Health-HomeInformation-Resource-Center.html
Other Health Homes/Delivery System Reform Resources:
• Families USA, Health system reform generally: http://www.familiesusa.org/health-system-reform/
• National Academy for State Health Policy (NASHP),Medical Home Resource Center:
http://www.nashp.org/med-home-map
• Center for Medicare and Medicaid Innovation (CMMI): http://innovation.cms.gov/
• Substance Abuse and Mental Health Services Administration (SAMHSA) /Health Resources and
Services Administration (HRSA) Primary and Behavioral Healthcare Integration Initiative:
http://www.integration.samhsa.gov/about-us/pbhci
• State Innovation Models: http://innovation.cms.gov/initiatives/state-innovations/
Contact Information
Malinda Ellwood, JD
Health Law and Policy Senior Fellow
mellwood@law.harvard.edu