Simplification and the Patient Voice:

The Path to Elimination

Michael NinburgIVHEM , AmsterdamNovember 22, 2019

The impact of civil society Agenda

• Importance of Patient Voice and Involvement

• Liver Societies’ Call to Action

• Washington State HCV Elimination Plan

The impact of civil society Test, Treat, Cure – Simple?

Globally 290 million people are living with viral

hepatitis unaware.

Health systems need to find the missing

millions by treating patients where they are.

The most underserved groups will not come to

you.

The impact of civil society Importance of Patient Voice

Civil society and the affected community play a

crucial role in the development and

implementation of hepatitis strategies and

health systems.

Patients bring unique insights into the needs of

the community, especially the most

underserved by health systems.

Patient voices are a driver for policy change,

the right patient in front of the right person can

have a lasting impact. Patients have been

instrumental for change in Mongolia, New

Zealand, Uganda, Kazakhstan and Portugal.

The impact of civil society Understanding Stigma

Stigma is a major barrier to diagnosis, it

prevents people from coming forward for

testing and treatment.

Patients can feel stigmatised by doctors, one

bad experience with a health care professional

can hugely affect the health outcomes of an

individual.

Medical professionals have a voice to ensure

that the right of their patients are met.

The impact of civil society Liver Societies’ Call to Action - HCV

• Simplification

• Integration

• Decentralization

• Task Sharing

The impact of civil society Liver Societies’ Call to Action

Simplification

• Diagnosis of chronic HCV infection is possible in one clinic visit, with rapid antibody screening and a single reflexive viral load test.

• Genotypic testing is no longer necessary prior to treatment initiation.

• To confirm cure, a 2nd viral load test, performed 12 weeks post-treatment, will confirm sustained virologic response.

• Cured patients should be declared uninfected and should not be marginalized merely because of antibody positive test.

The impact of civil society Liver Societies’ Call to Action

Integration

• Integration where it makes sense (e.g. with HIV programs in sub-Saharan Africa, harm reduction programming throughout the world, primary care)

• Inclusion of HCV services in all aspects of the health system – clinical service delivery wards, prevention services, education curricula, monitoring & evaluation systems, domestic and donor health budgets, supply chain systems, laboratory networks and program planning & management.

The impact of civil society Liver Societies’ Call to Action

Decentralization

• Expansion of effective interventions to all levels of the health system to scale and more broadly reach populations at-risk of infection.

The impact of civil society Liver Societies’ Call to Action

Task SharingHepatologists and other specialists (including advanced practice clinicians and clinical pharmacists trained in hepatology), have a critical role to play, including:

• managing complex cases (cirrhosis, hepatocellular carcinoma, liver transplants)• creating and maintaining appropriate referral pathways from public health and primary care programs• becoming super-mentors providing clinical mentoring (including virtual mentoring systems, such as ECHO)• participating in local coalitions of public and private stakeholders to implement all aspects of the public health approach to viral hepatitis elimination• advising health ministries’ development of hepatitis program plans, hepatitis testing and treatment policies and negotiations to obtain affordable diagnostics and therapies

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Governor Inslee Issued Directive on September 28, 2018 to Eliminate Hepatitis C in Washington by 2030

Photos from Seattle Times, September 28, “Inslee: Erase hepatitis C in Washington by 2030”

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History of How We Got Here

1998 – Advocates press for a state response to HCV

2003 – Bill passed requiring DOH to develop an HCV strategic plan

2004 – DOH develops first Washington State HCV strategic plan

2006 – Funding for HCV response is included in state budget for the first time

2014 – DOH develops a second Washington State HCV strategic plan

2018 – Internal state cross-agency work group starts discussing elimination in spring, meeting regularly from June through September 2018

• Department of Corrections• Department of Health• Department of Labor & Industries• Department of Social & Health Services• Health Care Authority• Office of Financial Management• Office of the Governor• Office of the Insurance Commissioner

Olympia, Washington - 1999

Who we are:

A collective impact initiative seeking a multisector response to the public health

threat of hepatitis C.

Our vision:

A world free from hepatitis C.

Our mission:

Working together to eliminate hepatitis C in Washington State by the year 2030.

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Statewide Hepatitis C Elimination Plan

o DOH, in collaboration with any other relevant state agencies that it identifies, shall convene and facilitate an hepatitis C virus (HCV) elimination coordinating committee comprised of stakeholders from various sectors, including individuals personally affected by HCV.

o The committee shall draw on existing efforts, best practices, and community knowledge to develop, by July 2019, a comprehensive strategy to eliminate the public health threat of HCV in Washington by 2030.

o The strategy will address needed improvements to the public health systems to help ensure that all people living in Washington who have or are at risk for contracting HCV, have access to preventive services, know their status, and connect to care and ultimately the cure.

o The elimination strategy shall include a major public health communications plan financed, to the extent possible, by the funds saved through the drug purchasing strategy.

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Hep C Free WA Coordinating Committee

Includes representatives from:• State agencies and offices (DOH, HCA, DOC, OFM, LNI, etc.)• Tribal health centers• Local health jurisdictions• Federally qualified health centers• Community-based organizations• Syringe service programs• Opioid treatment programs• Veterans Administration• Academic institutions (UW, WSU)• Health plans• Professional organizations

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Opportunities for collective impact and integration

Hepatitis C Epidemic

Mental Health

Services Primary Care

Services

ReproductiveHealth

Social and Housing Services

Correctional Health

Naloxone and

Overdose prevention

Syringe Services

(SSP)

Infectious Disease

Testing & Treatment

SUD Treatment and OAT

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Hep C Free WA values:

Easy access for all. • Hep C Free WA believes all people at risk for and living with hepatitis C should have easy access to testing, care,

and a cure for hepatitis C.

Uphold the dignity of each person. • Hep C Free WA believes we must reduce hepatitis C related stigma, recognize the worth of affected

communities, and ensure whole-person care to eliminate hepatitis C and promote wellness.

Clear communication. • Hep C Free WA strives to educate all Washingtonians about hepatitis C, including how to prevent hepatitis C,

where to get tested, and how to get cured.

Health equity. • Hep C Free WA works so that all communities impacted by hepatitis C receive what they need, including

services that are culturally relevant and in language they understand, to prevent, diagnose, and cure hepatitis C and achieve the highest level of health and wellbeing.

Innovative solutions. • Hep C Free WA seeks new and creative ideas to address hepatitis C by centering the voices of those

disproportionately impacted and pairing community wisdom and strengths with the best available data.

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Hep C Free WA

Three topic-specific work groups made recommendations to the Coordinating Committee for what should be included in the Hep C Free WA plan to eliminate HCV by 2030.

HCV EliminationHep C Free WA Coordinating Committee

Community-Based

Responses & Interventions

Data & Strategic

Information

Clinical Strategies

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Each work group went through a process to draft recommendations in their topic areas

DEVELOP RECOMMENDATIONS

Who has the ability to actualize it? Is it clear or does it need context? How does it contribute to elimination? Does it require review or consultation by anyone? What resources are required to

make it actionable? Should there be a phased approach?

PRIORITIZE AND OUTLINE KEY OBJECTIVES

Rank barriers based on the threat they pose to achieving elimination in the state

Rate strategies on their:1) Feasibility to implement and 2) Potential impact

INITIAL BRAINSTORMING EXERCISE

Barriers Strategies to overcome barriers

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Hep C Free Washington’s Plan

• Elimination plan released on July 26, 2019

• Plan comprised of 15 goals and 90 recommendations

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Opportunities & challenges engaging with people at risk for and living with HCV

Centering the voices of those disproportionately impacted:

Different opportunities with different thresholds of engagement

1. Coordinating committee participation, including boots on the ground program teams;

2. Additive engagement opportunities;

3. Larger listening sessions at trusted spaces;

4. Create a community-advocate leadership program to support and build capacity of those who want to engage;

5. Inclusion at all levels of Hep C Free WA;

6. Build this as core values into state’s learning, planning and action process.

• Health care providers, PCP• Pharmacies• Syringe service programs• SUD treatment programs• Community and social

services• Faith based organizations• Emergency Departments• Homeless encampments• Correctional systems

Opportunities to Connect:

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Community Events

Total Participants:

75 from Seattle

40 from Spokane

Powerful panel of people who have had HCV at each event:

• Highlighted the roles of stigma, shame, fear, harm reduction, hope

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What makes HCV elimination possible in Washington State?

• Mature DOH program infrastructure based in HIV work (End AIDS WA)

• Drug user health infrastructure, including access to syringe service programs and medication treatment for opioid use

• Dedicated CBOs integrated into communities disproportionately impacted

• Committed medical providers willing to treat and cure HCV

• Academic institutions with clinicians and educators studying HCV interventions and building provider capacity

• Medicaid expansion and a Medicaid HCV policy that makes it possible to treat the majority of Medicaid beneficiaries living with HCV, (rated an ‘A’ grade on www.stateofhepc.org)

• AIDS Drug Assistance Program that supports HCV treatment for people who are living with HIV and HCV

• Improving HCV surveillance and assessment efforts

• CDC support for some HCV programming and surveillance

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Potential barriers to HCV elimination in Washington State

• Increasing homelessness and displacement

• Increasing incidence of HCV among young people who inject drugs

• Racial disparities in HCV case reporting

• Many primary care providers not yet ready or willing to treat and cure HCV in their practices

• Limited federal investment in viral hepatitis surveillance, prevention, testing, and treatment interventions

ELIMINATION

PEOPLE WHO ARE AFFECTEDby viral hepatitis

will not be achieved without involving