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					             HEPATITIS C VIRUS
         EMPOWERMENT GROUPS IN
METHADONE MAINTENANCE TREATMENT PROGRAMS:

           SUPPORT
          EDUCATION
          ADVOCACY



             Alain Litwin, MD, MPH
               Irene Soloway, RPA
           Frank Medina, Peer Educator

                October 19, 2004
         4 million people
in the United States are infected
    with the hepatitis C virus
              (HCV)
           Sources of Infection for
           Persons with Hepatitis C

      Injecting drug use 60%
                                         Sexual 15%


                                                     Transfusion 10%
                                                     (before screening)


                                               Other* 5%
                                 Unknown 10%

 *In a medical setting; healthcare work; perinatal
Source: Centers for Disease Control and Prevention
65%-84% of methadone-
maintained patients are
  infected with HCV
Future HCV Disease Burden
   in the United States


Need for liver transplantation    61%

            Decompensation         68%

         Liver-related deaths                   223%

                         HCC                       279%

                    Cirrhosis                                           528%
                             0%   100%   200%    300%    400%    500%    600%
                                   Estimated % increase by year 2008
   Predictions for 2010-
           2019

•193,000 HCV deaths
   –1.83 million years of life lost

•$11 billion in direct medical care costs

•$21.3 and $54 billion societal costs from
premature disability and mortality
    NIH Consensus Statement, 2002
•   Recent, albeit limited, experience has demonstrated the feasibility and effectiveness of treating
    chronic hepatitis C in people who use illicit injection drugs, known as injection drug users (IDUs).

•   Management of HCV-infected IDUs is enhanced by linking these patients to drug treatment
    programs.

•   Methadone treatment has been shown to reduce risky behaviors that can spread HCV infection,
    and it is not a contraindication to HCV treatment.

•   Efforts should be made to promote collaboration between experts in HCV and healthcare
    providers specializing in substance-abuse treatment.

•   HCV therapy has been successful even when the patients have not abstained from continued
    drug or alcohol use or are on daily methadone.

•   However, few data are available on HCV treatment in active IDUs who are not in drug treatment
    programs. Thus, it is recommended that treatment of active injection drug use be considered on a
    case-by-case basis, and that active injection drug use in and of itself not be used to exclude such
    patients from antiviral therapy.
Integrating HCV care with MMT
     at AECOM/Montefiore
• Network of community-sited MMT programs in the
  Bronx, NY

• Comprehensive on-site primary care

• 4300 patients
   – 59% Latino/a, 23% African-American, 18% Caucasian
   – Mean methadone dose: 90 mg
   – 65-75% (2800) HCV Antibody positive
   – 56% chronic HCV infection (detectable HCV-PCR)
             On-site HCV Treatment
           at AECOM/Montefiore MMTP

                    MMTP
                                                       Hospital
Site:     Article 28 facility                 Hepatologist
          Scant medical infrastructure        Interventional radiologist
Staff:    Internist or FP, PA                 Pathologist
          Part-time psychiatrist              EST, optho, etc.
          Counselors, HIV Coordinators,
          nursing, SW
Services: Opioid agonist therapy
          Comprehensive on-site 1º care
                     General, HIV, HCV, Gyn
          Psych evaluation and tx                   Lab
          Support group
          Laboratory testing, EKG
          Urine toxicology testing
 Albert Einstein College of Medicine
    Division of Substance Abuse
    2003 Death Certificate Data
                (81 deaths)


• 25% (20 patients) died from HCV with end-
  stage liver disease
• 21% (17 patients) died from unknown
  causes
• 6% (5 patients) died from HIV/AIDS
  related complications
         Hepatitis C

             Start
Support / Empowerment Groups
      South Bronx Support Group

“We represent a coalition of patients, providers,
family members and friends: all affected by the
hepatitis C epidemic in our South Bronx
Community.”

“People in methadone maintenance must have
access to hepatitis C resources. We work to
ensure that current and former drug users have
access to treatment for both substance abuse
and hepatitis C.”
             Education

Support groups specifically allow patients to
 educate each other about HCV infection,
 the steps involved in pre-treatment
 evaluation of HCV, and the management
 of side effects during HCV treatment.
Support
Advocacy

  We the undersigned support the goals
  of the South Bronx Hepatitis C
  education, advocacy and support
  group in their advocacy for Medicaid
  reimbursement for hepatitis C PCR and
  genotype testing.



Name   Address      Phone     Contact
From Florida to New York City…
    Becoming a hepatitis c
    support group member
What the Support Group has meant to me




  Empowerment, education, motivation. A voice
         within my own community
Evolution of a
Support Group
                   HUB 1 Hepatitis Meeting 1:




             COMMON QUESTIONS ABOUT HEPATITIS
             Irene Soloway Physician Assistant Hub 1

                         What is hepatitis?

Hepatitis is an inflammatory condition of the liver.
It can be caused by bacterial or viral infection, fat buildup in the
liver, drugs, alcohol, toxins, and other causes. Most hepatitis is
caused by viruses that invade the liver cells. They take over the
liver cells and can cause damage that impairs liver function.
                   HUB 1 Hepatitis Meeting 1:


         COMMON QUESTIONS ABOUT HEPATITIS (cont.)
           Irene Soloway Physician Assistant Hub 1

Acute hepatitis: an infection that lasts less than 6 months and
that your body can get rid of

Chronic hepatitis: an infection that stays in your body and needs
medical treatment to eliminate it

Fibrosis: scarring that occurs as the liver attempts to repair itself

Cirrhosis: when all the scar tissue formed from the constant
repairing process is connected together, making the liver smaller
and harder. Blood is not able to freely flow through the liver, and
eventually the liver cannot function normally
                  HUB 1 Hepatitis Meeting 1:


         COMMON QUESTIONS ABOUT HEPATITIS (cont.)
           Irene Soloway Physician Assistant Hub 1

                   Which is the worst hepatitis?

There are 6 different hepatitis viruses: A, B, C, D, E and G.
Hepatitis A and B are most likely to cause symptoms, and chronic
hepatitis B and C are the most likely to cause long term health
problems. D, E, and G are quite rare

Hepatitis B is more common and contagious than HIV. It is spread
through contact with infected blood, and through sexual contact.
However, most people who get infected will fight off the infection.
There is a vaccine to protect your from getting hepatitis B if you
have not already been exposed.
                  HUB 1 Hepatitis Meeting 1:


        COMMON QUESTIONS ABOUT HEPATITIS (cont.)
          Irene Soloway Physician Assistant Hub 1

Hepatitis C is the most common. Almost 5 million Americans have
been exposed to hepatitis C. over 80% of people who have used IV
drugs have chronic hepatitis C. Hepatitis C is spread by blood to
blood contact, including blood transfusions before 1992, body
piercing, knife fights, tattooing, and IV drug use. Even sharing
straws while sniffing cocaine or heroin can be a risk factor. The
risk of getting hepatitis C from sex is very low, unless you have
multiple sexual partners and STDs. There is no vaccine at this
time to protect you from it.
                   HUB 1 Hepatitis Meeting 1:


         COMMON QUESTIONS ABOUT HEPATITIS (cont.)
           Irene Soloway Physician Assistant Hub 1

              If I have hepatitis C, am I going to die?

Hepatitis C is a slow acting virus, and it usually takes 20-30 years
to progress to cirrhosis and liver failure. Symptoms do not show
up for years. Many people who have hepatitis C will live out their
life spans without ever getting sick from it. However, at least 2 out
of 10 people will get cirrhosis and have greater risk of
complications or death. People who have a history of heavy
drinking or HIV usually have a faster disease progression.
FIRST GROUP
          Starting with
    the Clinical Relationship




Inform patients who are concerned about their hepatitis status about
         the support group as soon as the first medical visit.
   Identify Core Leadership
Every clinic has patients who have
 leadership ability.
Some are already recognized as leaders
 (e.g pac committee leaders).
Others will emerge in the course of
 meetings.
These leaders should be acknowledged
 for their work, thus motivating others to
 step forward in leadership roles. A culture
 of self help and education is developed.
Location / Food
 Create interesting flyers to promote meetings.



           HUB TRIPLEX
          Hepatitis Group
            MEETING
All Hub 1, Hub 2 and Hub 3 Clients Welco
        WHEN: February 3
             12 pm-2 pm
      WHERE: PIZZA RESTAURANT 448 E. 149TH
                        ST

        (WALK TOWARDS ST ANN’S, RESTAURANT IS BETWEEN BERGEN AND
          BROOK, ACROSS FROM PARKING LOT)



 TOPIC: HEPATITIS C TRANSMISSION
      A COMMUNITY DISCUSSION
          HUB TRIPLEX

    HEPATITIS C
SUPPORT GROUP MEETING
         MONDAY JUNE 21
           12 PM-1 PM
         HUB 1 BASEMENT
        ALL ARE WELCOME
TOPIC: METHADONE AND HEPATITIS:
      MYTHS AND REALITIES:
 HUB TRIPLEX HEPATITIS C MEETING
  MONDAY APRIL 19 12 -2 PM
          HUB 1 CONFERENCE ROOM
   TOPIC: ALCOHOL AND THE LIVER
FIGHT BACK AGAINST THE HCV EPIDEMIC
          ALL ARE WELCOME
Galvanizing Event
IMPORTANT MEETING
        Monday May 20 at 11:30 !!!!
 AMERICAN LIVER FOUNDATION WALKATHON
         1) registration/sponsor $$$
               2) telephone tree
                 3) the banner
                  4) the walk
                  5) the movie
                  6) the party
Group Identity Formed




                        Del Sur del Bronx
                                             Albert
                                            Einstein
                                            School of
        en movimiento                       Medicine
  Starting Hepatitis C Support Groups:
      Useful Organizing Principles

• Become an expert on hepatitis C at your
  clinic (even if you aren’t one)
• Raise awareness of hepatitis C issues
  clinic wide
    - annuals/clinic visits/treatment plans
    - pamphlets (literature rack)
    - staff meetings
    - articles
    - grand rounds
    Starting Hepatitis C Support Groups:
        Useful Organizing Principles



•   Share responsibility with core leaders
•   Link individual success to group goals
•   Link group goals to administrative goals
•   Consider all administrative issues
  Starting Hepatitis C Support Groups:
      Useful Organizing Principles

• Create a galvanizing event
• Make sure every meeting is an event
• Invite special guests
  –   Medical students / residents
  –   Medical experts
  –   Harm reduction workers
  –   Local health department

• Document everything
Sustaining a Support Group




  Newsletters and the media can be important
  PEER EDUCATION: A
NATURAL OUTGROWTH OF
    SUPPORT GROUP
   FORMAL TRAINING OF
     PEER EDUCATORS
• HCV Empowerment Groups are the
  foundation of formal peer education
  program
• 3 classroom sessions (2 hours each)
     -1st 2 sessions included informal written
       pre and post-test (P/PEGS)
     -final session included role playing with
      feedback, and a written final exam
                    Role Playing
•   2 Peer Educator students facilitate a 10-minute group
    session in front of peers and staff
      -Practice Introductions
      -Deliver basic HCV knowledge
      -Practice responding to difficult questions

•   Formal Feedback
      -Peers identify own strengths/weaknesses
      -Staff/peers identify strengths/weaknesses

•   Practice ongoing facilitation and knowledge skills in
    our own monthly HCV Empowerment Group
MEET HEPATITIS C PEER EDUCATORS FROM THE HUB’S
“BRONX LIVERATORS” HEP C GROUP
KNOWLEDGE IS POWER:
FIGHT BACK AGAINST THE HCV EPIDEMIC
WHERE: CD SOUTH CONFERENCE ROOM

WHEN:   TODAY!!!!!!            THURSDAY MARCH 11
2:00 PM     PEER EDUCATION GRADUATION
2:30 PM     HEP C QUESTIONS AND ANSWERS

REFRESHMENTS WILL BE SERVED
PEER EDUCATION: Group
Members Come to Believe in
    their Expertise
     IMPLEMENTATION OF
       PEER EDUCATION

• Stipends for educators
    -$20 per peer + transportation

• Documentation: attendance records

• Feedback from peer educators and host



•
    IMPLEMENTATION OF
      PEER EDUCATION

• Peers go out in pairs

• Props (plastic liver) and literature

• Peers educate both staff and patients
            Peer Program
          (2/2004-10/2004)
• 35 sessions usually led by 2 peer educators
  -22 at 8 DoSA sites
  -11 at SEP outreach site
  -2 at outside sites
• Approximately 250 patients and 30 staff
  members reached
• 14 peer educators graduated (10 have
  led sessions to this date)
“The peer educators are outspoken, knowledgeable and
   motivated to provide information to their peers. They
   motivated the group with self-disclosures, encouraged
   follow-up with primary care provider and offered support.
   The group had many questions about transmission,
   symptoms, treatment process and effects of
   medications. The peer educators are very well informed
   and are able to relate their message clearly and simply
   to patients and staff. Personally, I am amazed by their
   presentations and I believe that this is extremely
   important to the community”

Substance Abuse Counselor / Relapse Prevention Group Facilitator
Peer Educators Motivated to
   Care for Themselves
14 Peer Educators
• 13 HCV Ab+ (all HCV PCR+)
• 9 underwent liver biopsy
   (1 not treated due to mild liver disease; 7 treated due
   moderate/advanced liver disease; 1 NASH)
• 5 with cirrhosis (including 2 decompensated)
• 10 initiated HCV antiviral treatment
• Overall, good responses to treatment
   –   5 sustained viral responses (SVR) including 2 HIV/HCV
   –   2 end of treatment responses (ETR): awaiting SVR
   –   1 6-month EVR
   –   1 recently initiated treatment
   –   Only 1 did not tolerate antiviral treatment (HIV/HCV)
Peer Educators Motivated to
   Care for Themselves

• Renewed focus on recovery

• Active users take steps towards
  abstinence and sustained recovery

• Renewed focus on relapse prevention
   Peer Educators Motivate
           Others
• Patients learn about basic HCV knowledge and
  evaluation process

• Patients motivated to focus on addiction
  treatment and recovery

• Patients motivated to undergo various steps of
  HCV evaluation and treatment process
  – Establish diagnosis
  – Liver Biopsy
  – Initiate HCV Treatment
  Where do we go from here?
• Formally study outcomes of HCV
  empowerment groups and peer education
  programs
• Expand HCV support / empowerment
  groups and peer education programs
• Continue to build bridges to hepatitis C
  treatment through advocacy
• Continue to educate providers to break
  down barriers
                   Patient Literature
http://www.ci.nyc.ny.us/html/doh/home.html
NYC DOH (brochures on website)

www.cdc.gov (also www.cdc.gov/idu)

www.natap.org

www.harmreduction.org
(Harm Reduction Coalition)

http://www.lola-national.org
(Latino Organization for Liver Awareness)

www.hcvadvocate.org

http://www.liverfoundation.org/order_form.pdf
(American Liver Foundation charges 0.75 for single copies and $20 for 100 copies)
            Provider Information
www.natap.org by Jules Levin
(Get on email list for updates on HCV and HIV)

www.projectsinknowledge.com
(Care and Counsel Handbook and other HCV CME)

IN-Viro advancing the study of liver disease 1-800-227-7448

http://www.uchsc.edu/mpaetc/home.html
http://www.uchsc.edu/mpaetc/HIV_HCV%20pocket%20guide.pdf
[Clinician’s Guide to HIV/HCV Co-infection and lots of other useful links]

				
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