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Consensus Statement on Hepatitis C Elimination in New York State

March 7, 2017

Call to Action
New York State (NYS) faces a growing hepatitis C epidemic with a rising death toll. Given the
availability of new highly effective, well-tolerated curative treatments, we can no longer settle for a
low cure rate that perpetuates the high fiscal and human costs of inaction. The committee that
organized the NYS Hepatitis C Elimination Summit, along with the other providers, community-
based organizations and individuals living with and affected by hepatitis C that sign this consensus
statement, call on Governor Andrew Cuomo, the NYS Legislature, and industry partners to make a
joint commitment to hepatitis C elimination, and for appointment of a formal NYS Hepatitis C
Elimination Task Force.

With a new generation of all-oral, highly effective and easy to tolerate curative treatments for hepatitis
C virus (HCV) infection, and proven harm reduction strategies to prevent transmission, NYS’s HCV
epidemic can finally be controlled – and eventually eliminated – with the tools we have available.

For NYS and the rest of the nation, efforts to control HCV are more urgent than ever. An estimated 3.5
million to 5.3 million Americans, including more than 200,000 New Yorkers, are living with chronic
hepatitis C infection, and a shocking 75% of Americans and 50% of New Yorkers are unaware of their
status.i ii Even among people with diagnosed HCV infection, many lack consistent care or access to
treatment, a fact that drives increasing HCV-related mortality. Left untreated, chronic HCV infection can
lead to cirrhosis, liver cancer and the need for liver transplantation. Hepatitis C now kills more people in
the United States each year than AIDS,iii and both in NY and the rest of the country, HCV-related
mortality has risen steadily during the past decade.iv Hepatitis C is the leading cause of serious liver
disease in the United States (U.S.).

Even though NY faces concerning gaps in its HCV continuum of care that present ongoing barriers to
HCV prevention and treatment, the State has built a strong foundation for an HCV elimination plan. NYS
has many of the most skilled medical providers, prevention specialists, researchers, and public health
officials in the nation. The NYS Department of Health (DOH) Hepatitis C Care and Treatment Initiative
and the New York City (NYC) Department of Health and Mental Hygiene (DOHMH) Project Inspire have
started to build HCV clinical capacity and expand access to HCV treatment. NY’s more than twenty-year
history of support for syringe exchange and harm reduction services, and its role in originating and
expanding medication assisted treatment for opioid dependence, have informed HIV, hepatitis, and
substance use services worldwide. And NYS’s successful ongoing Medicaid Redesign provides further
support for a new effort to fill the gaps in the HCV care continuum.

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NYS’s trailblazing plan to end its HIV/AIDS epidemic by the end of the year 2020, and the
recommendations made by Governor Andrew Cuomo’s Ending the Epidemic (ETE) Task Force,
demonstrate how state, city, county and community experts can set and work toward joint disease
control goals and targets. ETE initiatives have already improved health outcomes across the HIV
continuum of care and NYS is on-track to achieve its ETE goals.

Every NY state and local government agency, industry leader and provider that serves people with HCV
has a role to play in this work to scale-up prevention, testing and linkage to care, treatment capacity,
and supportive services statewide to eliminate HCV. The Governor can lead by appointing an NYS
Hepatitis C Elimination Task Force that is charged with working with the NYS DOH to establish targets
and priority recommendations for HCV elimination. The State Legislature can actively participate
through a campaign to combat HCV stigma and through legislative and budget action. Failure to make
the necessary investments now to control and eventually eliminate HCV will lead to further transmission
of HCV, higher rates of liver cancer, transplantations, hospitalizations and mortality, and far higher long-
term financial costs. Now that HCV is a highly curable condition we can and must reverse these negative
trends; it is time for NYS to commit to HCV elimination.

HCV in NYS

Since 2001, more than 254,200 chronic HCV cases have been reported in NYS. In 2014, there were
16,169 chronic HCV cases and 127 acute cases reported. The statewide HCV case rate in 2014 was 83.4
per 100,000. The rate was higher in NYC (94.1 per 100,000) than outside of NYC (75.7 per 100,000). Yet
although NYC has historically been the epicenter of the State’s HCV epidemic, in 2014 more than half
(51.2%) of new chronic hepatitis C cases were diagnosed outside of NYC.v

Since 2004, in NYS there has been a shift in the age distribution of reported HCV cases from being
primarily among persons aged 40-60 years to being reported among a growing second cohort of persons
aged 20-40 years. This shift is especially striking outside of NYC. Recent increases of HCV are occurring
outside of NYC among young people who inject drugs, which parallels the growing epidemic of
prescription opioid abuse seen in suburban and rural areas. There has also been a shift in the
distribution of cases by sex. In 2004, females accounted for 31.9% of HCV cases reported outside of NYC.
This proportion increased to 38.2% in 2014. vi HCV is of special concern for women of childbearing age
because of the risk of perinatal transmission and the fact that HCV treatments are contraindicated for
pregnant women due to the medications’ teratogenic impact on the fetus.

We Can Eliminate HCV in NYS

In the spring of 2016, VOCAL-NY and other community organizations active in the HCV response
partnered with the NYS DOH and NYC DOHMH to consider and build consensus on the opportunity for
statewide HCV elimination. This effort was informed by the achievements of the statewide ending the
HIV/AIDS epidemic initiative, a National Academies of Medicine report on eliminating hepatitis B and C
in the U.S., and HCV elimination targets set by the World Health Organization (WHO). A broad

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committee of 94 stakeholders—state and local government representatives; epidemiologists;
physicians; harm reduction and social service providers; and community advocates—came together to
develop recommendations to inform a statewide plan to eliminate HCV infection. Between September
and mid-December, work groups met to draft and prioritize recommendations in five areas of focus:
prevention; testing and linkage; care and treatment access; data, surveillance and metrics; and social
determinants of health. These work group recommendations, which should be considered and advanced
during a more formal Task Force process, support the following five pillars for a statewide HCV
elimination plan:

1. Enhance HCV prevention, testing and linkage to care services for people who inject drugs,
people who are incarcerated, men who have sex with men, and other populations
disproportionately impacted by HCV infection.

2. Expand HCV screening and testing to identify people living with HCV who are unaware of their
status and link them to care.

3. Provide access to clinically appropriate medical care and affordable HCV treatment without
restrictions, and ensure the availability of necessary supportive services for all New Yorkers
living with HCV infection.

4. Enhance NYS HCV surveillance, set and track HCV elimination targets and make this
information available to the public.

5. Commit NYS government and elected officials, public health professionals, HCV experts, and
industry partners to leadership and ownership of the NYS Plan to Eliminate HCV alongside
community members living with and affected by HCV.

Community led activism and service provision have defined NYS’s HCV, HIV and opioid epidemic
responses, but these efforts have been most successful when done in collaboration with state and local
government, public health professionals, service providers, researchers, and the private and nonprofit
sectors. People living with, cured of, and affected by HCV must have meaningful involvement in decision
making at all stages of the planning and implementation process.

The five community pillars along with priority work group recommendations will be publicly presented
at the NYS Hepatitis C Elimination Summit on February 7, 2017. State and local officials, elected
representatives, HCV primary care and social service providers, and community stakeholders will have
the opportunity to respond to and endorse this community consensus statement.

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Organizations That Endorse This Consensus Statement

1. AAHIVM Hepatitis Institute 37. Center for Health, Identity, Behavior &
2. ACRIA Prevention Studies (CHIBPS), New York
3. ACT UP New York University
4. Actevis Consulting Group 38. Central New York HIV Care Network
5. Adolescent AIDS Program, Children’s 39. CHOW Project
Hospital at Montefiore Medical Center 40. Coalition for Homeless Youth
6. African Services Committee 41. Coalition for Positive Health
7. After Hours Project Empowerment, COPE
8. AIDS Center of Queens County 42. Community Health Action of Staten
9. AIDS Community Resources, Inc. (ACR Island
Health) 43. Correctional Association of New York
10. AIDS Healthcare Foundation (AHF) 44. Cortland County
11. Albany County 45. CUNY Institute for Implementation
12. Albany Damien Center Science in Population Health (ISPH)
13. Ali Forney Center 46. CUNY School of Public Health and
14. Alliance for Positive Change Health Policy
15. Alliance for Positive Health 47. Department of Health and Mental
16. Alliance of Families for Justice Hygiene
17. American Academy of HIV Medicine, 48. Destination Tomorrow
New York Chapter 49. Diaspora Community Health Center
18. American Academy of Pediatrics, New 50. Doctors for America- NY
York 1 Chapter 51. Elmcor (Queens)
19. American Academy of Pediatrics, New 52. End AIDS Now
York 3 Chapter 53. Erie County
20. Amida Care 54. Evergreen Health Services
21. Apicha Community Health Center 55. Exponents
22. AREA 56. Family Planning Services of OCHD
23. Argus Community, Inc. 57. Federation of Protestant Welfare
24. Bailey House Agencies (FPWA)
25. Bedford Stuyvesant Family Health 58. GMHC
Center 59. God's Love We Deliver
26. BOOM! Pharmacy 60. Grand Street Settlement/ Project SOL
27. BOOM!Health 61. Harlem Health Promotion
28. Bridging Access to Care 62. Harlem United
29. Brightpoint Health 63. Harm Reduction Coalition
30. BRONX Lebanon Department of Family 64. Health People
Medicine 65. Hep Free Hawaii
31. Bronx Parent Housing Network, Inc. 66. Hepatitis Foundation International
32. Bronx Works 67. Hetrick-Martin Institute
33. Brooklyn Community Pride Center 68. Hispanic Federation
34. Callen-Lorde Community Health Center 69. Hispanic Health Network
35. CARES, Inc. 70. Hofstra University, Public Health
36. Catholic Charities Care Coordination Programs
Services 71. Housing Works
72. Hudson River HealthCare, Inc.
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73. Hudson Valley Community Services 108. Queerocracy
74. In Our Own Voices, Inc. 109. Rochester Regional Health Unity
75. Iris House Infectious Disease
76. Jefferson County Public Health Service 110. Ryan/Chelsea-Clinton Community
77. John Jay Department of Law, Police Health Center
Science & Criminal Justice 111. Sandra Atlas Base Center for Liver
Administration Disease at Northwell Health
78. Latino Commission on AIDS 112. SBH Health System Bronx
79. Legal Action Center 113. Schoharie County
80. Legal Aid Society 114. Sheltering Arms
81. Living Positive Inc. 115. Shubert Botein Policy Associates
82. Love Heals (SBPA)
83. Make the Road NY 116. Southern Tier AIDS Program
84. Manhattan Legal Services 117. St. Ann's Corner of Harm Reduction
85. Mental Health Association in 118. STAR Program, SUNY Downstate
Chautauqua County Medical Center
86. Morris Heights Health Center 119. Stony Brook University Hospital
87. Mount Sinai Institute for Advanced 120. Streetwork Project
Medicine 121. Suffolk County
88. National Action Network NYC 122. Sullivan County
89. National Black Leadership Commission 123. Swan Project
On AIDS, Inc. 124. The Center for HIV Law and Policy
90. National Viral Hepatitis Roundtable 125. The Fellowship of Affirming Ministries
91. National Working Positive Coalition (TFAM)
92. New Alternatives for LGBT Homeless 126. The Hepatitis C Mentor and Support
Youth Group, Inc. (HCMSG)
93. New York City AIDS Housing Advocacy 127. The Icahn School of Medicine at
Network Mount Sinai Division of General Internal
94. New York Harm Reduction Educators Medicine HCV Clinical & Research
(NYHRE) Program
95. New York State Association of County 128. The Lesbian, Gay, Bisexual, and
Health Officials (NYSACHO) Transgender Community Center (The
96. New York Transgender Advocacy Group Center)
(NYTAG) 129. The Sharing Community
97. NYC Hepatitis B Coalition 130. Together Our Unity Can Heal, Inc.
98. NYC Hepatitis C Task Force (TOUCH)
99. Onondaga Council on Alcoholism & 131. Tompkins County
Addictions, Inc. d.b.a. Prevention 132. Translatina Network
Network 133. Treatment Action Group, TAG
100. Orasure 134. Trillium Health, Bath
101. Otsego County 135. Trillium Health, Geneva
102. Planned Parenthood of New York City 136. Trillium Health, Rochester
103. Positive Health Project 137. Truth Pharm
104. Praxis Housing Initiatives, Inc. 138. Ulster County
105. Pride Center of Western New York 139. Union Community Health Center,
106. Pride For Youth, Long Island Crisis Bronx
Center 140. United Health Services, Binghamton
107. Quality Specialty Pharmacy 141. VillageCare
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142. Visual AIDS 145. Washington Heights Corner Project
143. VOCAL-NY 146. Women & Justice Project
144. Voces Latinas 147. Wyckoff Heights Medical CTR-PHM

i
Hart-Malloy, R, Carrascal, A, DiRienzo, AG, Flanigan, C, et al. (August 2013). Estimating HCV Prevalence at the State Level: A Call
to Increase and Strengthen Current Surveillance Systems. American Journal of Public Health, Vol. 103, No. 8.
ii
https://www.nastad.org/domestic/viral-hepatitis
iii
Ly, KN, Jian, X, Klevens, RM, Jiles, RB, et al. (2012). The Increasing Burden of Mortality From Viral Hepatitis in the United States
Between 1999 and 2007. Annals of Internal Medicine, Vol. 156, No. 4.
iv
NYC Department of Health & Mental Hygiene. (2013). Hepatitis C in New York City: State of the Epidemic and Action Plan.
v
NYS Department of Health. NYS Epidemiological Profile, 2014. (September 2016)
vi
NYS Department of Health. NYS Epidemiological Profile, 2014. (September 2016)

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