building effective advocacy for hepatitis c l.
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State and Local Hepatitis Advisory Committees working with states, counties and cities... Hepatitis is underfunded even a small increase would help significantly ...

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Presentation Transcript
what is an advocate
What is an Advocate?

1: one that pleads the cause of another;

2: one that defends or maintains a cause or proposal

there is a strengthening advocacy community

National Viral Hepatitis Roundtable (NVHR)

  • National Hepatitis C Advocacy Council

Hepatitis C Advocates UNITED! (HCAU)

Hepatitis C Appropriations Partnership (HCAP)

National Task Force on Hepatitis B


State and Local Hepatitis Advisory Committees—working with states, counties and cities…community activism is critical

There IS a Strengthening Advocacy Community

political landscape policy challenges
Political Landscape & Policy Challenges
  • Health reform debate
  • Economy and Congressional priorities
  • Whole new team of health leaders
  • Hepatitis is underfunded—even a small increase would help significantly
  • Many other programs are seeking increased funding
  • Lack of chronic disease surveillance makes it difficult to demonstrate the burden of disease
  • All politics is local
few federal dollars available to support hepatitis prevention services
Few Federal Dollars Available to Support Hepatitis Prevention Services
  • 2% of the CDC’s National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases and Tuberculosis Prevention budget is allocated to hepatitis B and hepatitis C. The overall budget of the National Center for HIV/AIDS, Viral Hepatitis, Sexually Transmitted Diseases, and Tuberculosis Prevention (NCHHSTP), where it is housed. The other disease prevention programs are funded as follows: HIV/AIDS 69%, STD 15%, TB 14%.CDC, Division of HIV/AIDS Prevention
    • Health departments are able to use HIV prevention dollars, with the endorsement of their HIV CPG, to purchase hepatitis C testing services.
    • There is no dedicated funding stream for adult vaccine.
federal hepatitis care treatment programs
Federal Hepatitis Care & Treatment Programs
  • There is no dedicated funding stream for care for HCV or HBV mono-infected persons.
    • Community health centers and others need increased resources to help meet the needs of these complex patients.
    • Provider training is critically needed.
  • Persons co-infected with HIV and HBV/HCV are dependent on the already stretched Ryan White CARE Act system.
    • CARE Act grantees are struggling to provide comprehensive services to their HIV infected clients.
    • State ADAPs: 25 states provide HCV drugs on their formulary, 21 provide vaccine.
    • Greater emphasis in addressing co-infection with HBV and HCV with current funding.
federal hepatitis care treatment programs7
Federal Hepatitis Care & Treatment Programs
  • Veterans Health Administration
    • National model for providing care and treatment to veterans with viral hepatitis.
federal legislation
Federal Legislation

Viral Hepatitis and Liver Cancer Prevention and Control Act (HR 3974)*

  • Representatives Honda(D-CA), Dent (R-PA) & Towns (D-NY)
  • Legislation supports:
    • State and local HBV and HCV testing, counseling and referrals for medical management
    • HCV and HBV education to providers
    • HBV and HCV surveillance programs
    • HAV and HBV vaccine for all at-risk adults
    • Increased support for the Adult Viral Hepatitis Coordinators to integrate HBV and HCV services into existing public health programs

*The legislation has not been introduced in the Senate

state advocacy is so important
State Advocacy is So Important!
  • Lack of federal leadership and response
  • State efforts are vital
  • Ability to secure state funding may be more likely
  • Better access to policymakers
  • Capitalize on the lack of federal response
what makes an effective advocate
What Makes an Effective Advocate?
  • Collaboration
  • Education
  • Message development
  • Letter-writing / story-telling
  • Persistence
collaboration key considerations in planning
CollaborationKey Considerations in Planning
  • What programs are already occurring?
  • What seems to be the natural “next step”?
  • Hepatitis coordinator is a vital resource.
  • Who are your community allies?
  • Who are your legislative champions?
  • What is realistic to expect?
  • Organize! Mobilize! Realize!
education learn the facts

EducationLearn the Facts

With all that is happening in the world today, why should anyone care about hepatitis C?

Hepatitis C is the most common chronic blood-borne virus in America.

message development hcv advocacy messages
Message DevelopmentHCV Advocacy Messages
  • Hepatitis C is everyone’s disease.
  • No one is immune to hepatitis C.
message development hcv advocacy messages14
Message DevelopmentHCV Advocacy Messages

The hepatitis C crisis requires:

  • public awareness campaigns
  • education for patients and providers
  • prevention efforts
  • HCV disease control
message development hcv advocacy messages15

People with hepatitis C need and deserve:

Message DevelopmentHCV Advocacy Messages

coordinated national, state, and local counseling, testing, and treatment programs

consistent, sustained funding to control the hepatitis C epidemic and prevent further suffering

delivering your message
Delivering Your Message

Identify and stick to your islands!

delivering your message17
Delivering Your Message




delivering your message18
Delivering Your Message

For example: Increased testing capacity

  • 1 in 50 Americans have hepatitis C which is the most common chronic blood borne virus in the US however ~ 75% do not know it.
  • ¾ of America’s health departments do not have the capacity to test for hepatitis C
  • While everyone does not need interferon based treatment, everyone does need to know if they are infected to protect themselves and their loved ones.

We are here today to ask that money be appropriated to increase the HCV testing capacity within the public health infrastructure to help alleviate the burden of this disease on individuals and on society.

letter writing story telling
Letter-Writing / Story-Telling

Never underestimate the power of your story

top 10 advocacy activities
Top 10 Advocacy Activities
  • Be Informed! Communicate with Policymakers! Vote!
    • You’re the Experts! Share Your Expertise!
  • Hepatitis Policy Updates
    • Share with Partners
  • Coalitions – Local, State & National
    • Join and Share Your Perspective
  • Work with Other Advocates
    • Advocates, CBO’s and Health Departments
  • Join Local/State Hepatitis Task Forces
    • Encourage Advocacy/Policy Subcommittees
top 10 advocacy activities22
Top 10 Advocacy Activities
  • Seek Gubernatorial and Mayoral Proclamations
  • Utilize Awareness Days
    • Hepatitis, HIV, Immunization, Substance Use, etc.
  • Engage with the Media
    • Press Releases, Letters to the Editor, Features Articles, Editorial Review Boards
  • State of Hepatitis Forums

– Invite Policymakers - Highlight the Need

  • Hepatitis Advocacy/Lobby Day
    • Descend on the State Capitol
together we can make a difference
Together We Can Make a Difference

A small group of thoughtful people could change the world.

Indeed, it's the only thing that ever has.

~ Margaret Mead