Harlem Hepatitis C Task Force Meeting Highlights

Harlem Hepatitis C Task Force Meeting Highlights

Tuesday November 17th ~ 2:30 - 4:30 ~ NY Public Library Harlem Branch ~ 9 West 124th Street 10027



In attendance ~ see below



Revitalizing NYC’s Coordinated Hepatitis C Advocacy Efforts

Daniel Raymond, Policy Director, Harm Reduction Coalition ~ raymond@harmreduction.org

Michael Carden, SUNY Downstate, Center for the Study of Hepatitis C ~ National Hepatitis C Advocacy Council ~ mic2011@med.cornell.edu



Hepatitis C Advocacy Background

§ Developing a strong HCV Advocacy base has been challenging due to: Difficult political climate for disease-specific advocacy; Fragmented, invisible community (stigma around drugs & disease, large #s of undiagnosed/out of care, highly variable and uncertain prognoses); Imperfect treatment options and prevention interventions & An incomplete epidemiologic picture.

§ Funding Issues:

o Nationally: The CDC currently provides approximately 18 million dollars a year to address Viral Hepatitis nationally. SAMHSA, NIH, VA, RWCA provide additional funding.

o New York State: 1.1 million was allocated to Viral Hepatitis in 2008 for the first time ever due to the advocacy efforts of groups such as StatusCUnknown.

o New York City: New York City Council has provided funds through LOLA and the Injection Drug Users Health Alliance (IDUHA). Funds are currently limited. Ryan White Planning Council advocated for prioritizing HCV clinical issues in HIV service organizations.

* Service Related Issues:

o Prevention: increasing local/state syringe access through policy/legal change; prevention in jails and prisons

o Treatment: access to quality care; coverage & reimbursement; advocacy with pharmaceutical companies & FDA on drug development process – more inclusive clinical trials (HIV+, methadone)

o Research: CDC viral hepatitis strategic plan, NIDDK Liver Disease Action Plan, ACTG Hepatitis Committee

* Advocacy Organizations of Interest:

o Hepatitis C Appropriations Partnership ~ Contact Colin Schwartz: cschwartz@nastad.org

o Hepatitis C Advocates United ~ Contact Ryan Clary: rclary@projectinform.org

o National Viral Hepatitis Roundtable ~ Contact Martha Saly: mbsaly@nvhr.org

o National Hepatitis C Advocacy Council ~ The National Hepatitis C Advocacy Council is a national collective of hepatitis C advocacy organizations and direct service providers. Our mission is to capitalize on our collective strength to maximize efforts to develop comprehensive and cohesive strategies to advance policies and practices that most effectively address the prevention, care and treatment of hepatitis C. Membership is at the organizational level, and activities include monthly calls to update members on advocacy activities and strategize around advocacy opportunities. Typically organizations have one or two persons who represent them on the Council. Applications can be obtained by e-mailing Michael Carden: mic2011@med.cornell.edu



Become a Hepatitis C Advocate

* Hepatitis C Advocacy Task Force Subcommittee ~ The NYC HCV Task Force is in a position to form a broad based diverse HCV Advocacy group. First meeting will be January 27th 10 AM. Location TBD. To sign up contact: raymond@harmreduction.org
* Hepatitis C Advocacy 101 Group Webinar Meeting. Wednesday January 13th (2:30 - 4:30 PM) ~ includes discussion time. Location TBD. To join, contact Michael Carden: mic2011@med.cornell.edu



Take Action Now!

* Lift the federal syringe exchange funding ban
* Viral Hepatitis and Liver Cancer Control and Prevention Act of 2009 bill introduced in the US House of Representatives! Would increase federal spending to prevent and treat hepatitis B and C. This bill affects people at risk for and chronically infected with hepatitis B and C by expanding education for patients and health care providers, increasing access to hepatitis testing and liver cancer screening, improving the capacity of health departments to detect outbreaks, and supporting viral hepatitis prevention and education programs across the U.S.. See call to action and call script on the website of the National Viral Hepatitis Round Table. To find out who your elected officials are, see the following website:

· www.congress.org ~ provides Federal & State elected officials through one zip code search



Hands on HCV Advocacy practice session: Daniel Raymond modeled calling his congress person and requesting support for the “Viral Hepatitis & Liver Cancer Control & Prevention Act of 2009” in front of the group. Task Force participant looked up their congress person online at computers available at the meeting and made calls at the end of the meeting. A call script was provided.



Task Force Project Updates

* “Assessing & Ensuring Psychosocial Readiness for HCV Treatment” Tool ~ in development
o Seeking reviewers for this project. To join contact: Jeffrey.Weiss@mountsinai.org
o Newly Discovered Resource: The Structured Interview for the Treatment of the Hepatitis C Virus (SIT-HCV). Amy K. Silberbogen, DeAnna L. Mori, and Stephanie Sogg. Journal of Clinical Psychology in Medical Settings, Vol. 12, No. 1, March 2005.
o Subcommittee will create a user friendly standard psychosocial HCV Treatment readiness tool, such as a card or booklet, which can be used by counselors and health care providers to help patients prepare for and engage in successful HCV Treatment.



* Medicaid – Medicare Training: HCV & HBV Special Issues ~ Frank Winter, Centers for Medicare & Medicaid Services (CMS)
o To register in advance for this training or learn more contact: frank.winter@cms.hhs.gov
o Will be a 2 day training in February & March



* Peer Delivered Syringe Exchange Citywide Conference ~ in planning stages
o To join this conference or learn more contact ellendon@harmreduction.org
o Conference will provide opportunity for workers involved in Peer Delivered Syringe Exchange throughout the city to meet each other, network, share best practices, review policies and guidelines, share concerns to improve working conditions, and be recognized for the critical work they do to reach the people at highest risk for Hepatitis C and other infectious diseases.
o Planning to hold 1st Annual PDSE Conference in late January 2010



* HCV Referral Pathway Map ~ Update & Meeting after Task Force
o To join this subcommittee or learn more contact: Natalie.Kil@mountsinai.org
o The purpose of this project is to identify HCV Service organizations in Harlem and throughout NYC and ensure that the community is aware of the organization, services provided and is able to engage in services as needed. Thi is accomplished through: In person meetings, the development of an HCV Services Google Map, Service Flow Diagram



* Public Biohazard Disposal Kiosk Expansion Project
o To join this subcommittee or learn more contact: Wesley Badillo, web03@health.state.ny.us
o Progress: Contact with a Community Board District Manager. Suggested framing biohazard disposal kiosk initiative as a way to support wellness & neighborhood beautification that may encourage tourism and generates revenue for the community. Suggested that local artist could "design" them, and they could be part of community tours. Questions raised:

1. What is the benefit of these kiosks to the community?

2. Why would people use them after hours? Can't they just hold on them overnight?

3. Who uses them? Are they all drug addicts?

4. How do you secure them from vandalism? and protect children?

5. What is the pick up and disposal procedure?

6. How long do they stay there?

7. How much do they cost and where does the money come from?

8. Will this project be evaluated and how will the findings be shared with the community?

9. Will there be a media or education campaign informing the community about the use and functions of the kiosks?

10. What is the relationship with local law enforcement?



* HCV Anti-Stigma Skit ~ in development
o To join this group contact: njohnso2@health.nyc.gov
o Group developed plot about a grandmother who applies for life insurance, but is denied due to her HCV status. She speculates about her risk factors.
o We are seeking people to help write the dialog and act in the skit!



* HCV & Nutrition Awareness Initiative
o There will be a presentation at the next HCV Task Force Meeting on the effect of nutrition, diet, exercise, weight and fatty liver on the hepatitis C disease process.



Community Announcements

* It's Time: Integrate Viral Hepatitis into Your Work. November 23 – 24. NYS DOH. NDRI, Manhattan .
* Viral Hepatitis: Who Should Get Tested? What does it Mean? Lecture by Maya Gambarin-Gelwan , MD . December 2nd (6:15 – 7:15 PM) Q&A following the seminar. Weill Greenberg Center , 1305 York Avenue , 2nd Floor. RSVP: Womenshealth@med.cornell.edu or 212-821-0971.
* Syringe Exchange & Law Enforcement Training. December 3rd Full day. Free! Harm Reduction Coalition, NY.
* NYC Adult Immunization Coalition Quarterly Meeting. December 10th (10 - 12PM) 26 Federal Plaza, Room 38-110A, New York . Contact: tbaker2@health.nyc.gov
* Regional Medicare Workshop. December 4th (8:45 - 5). CMS Regional Office, 26 Federal Plaza, New York , New York , Room 38-110A. To register contact: Raquel Lugo (212) 616-2339 or raquel.lugo@cms.hhs.gov.
* HEP DART 2009: Frontiers in Drug Development for Viral Hepatitis. December 6-10. Hawaii .


In attendance

1. Andrew Handel, Data Analyst William F. Ryan Community Health Center
2. Christina Persaud, Recruitment Specialist ~ The Center for the Study of Hepatitis C ~ Weill Cornell Medical Center
3. Daniel Raymond, Policy Director, Harm Reduction Coalition ~ raymond@harmreduction.org
4. Donald Davis, Hep C Program Manager ~ New York Harm Reduction Educators (NYHRE)
5. Elizabeth Cintron, Outreach Coordinator ~ North General Hospital
6. Frank Winter, Partnership Manager Centers for Medicare & Medicaid Services (CMS)
7. Gizelle Gopez, Gizelle V. Gopez, Master of Public Health Candidate, 2010 ~ Columbia University , Mailman School of Public Health
8. Gloria Harrison, Health Educator ~ FROST'D
9. Gloria Searson ~ North General Hospital
10. Hans Desnoyers, COO ~ Baily House – East Harlem
11. Ilana Chilton, RA ~ Mount Sinai Division of Internal Medicine
12. Isadore Kayembe, Early Treatment Specialist ~ FACES NY (formerly Minority Task Force on AIDS)
13. Joan Edwards, Program Liason ~ Women in Need
14. Lisa Anderson ~ Vertex
15. Lurie Jackson, HCV Testing ~ Harlem United
16. Michael Carden, SUNY Downstate, Center for the Study of Hepatitis C ~ National Hepatitis C Advocacy Council ~ mic2011@med.cornell.edu
17. Narelle Ellendon, RN, Syringe Access Expansion Coordinator, ~ Harm Reduction Coalition ~ ellendon@harmreduction.org
18. Natalie Kil, MPH ~ Mount Sinai Division of Internal Medicine
19. Nirah Johnson, LMSW ~ Office of Viral Hepatitis Coordination (OVHC) NYC DOHMH
20. Roland Walters, Trainer ~AIDS Service Center of New York
21. Scott Piazza, Peer Delivered Syringe Exchange Community Health Educator ~Washington Heights CORNER Project
22. Scott Weinstein ~ Patient Advocate and HCV Blog
23. Steve Linick ~ Echo Pharmacy
24. Susan Gambler, Deputy Program Director, Harlem District Public Health Office
25. Tino Fuentes ~ Washington Heights CORNER Project



Contact

Nirah Johnson, LMSW ~ Community Projects Specialist

Office o Viral Hepatitis Coordination ~ NYC Department of Health & Mental Hygiene

125 Worth Street, Room 326. New York, NY 10013

(212) 341-0432 ~ njohnso2@health.nyc.gov

Office of Viral Hepatitis Coordination Website ~ NYC Hepatitis C Task Force Resources & Services Map



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