HEPATITIS C VIRUS EMPOWERMENT GROUPS IN METHADONE MAINTENANCE TREATMENT PROGRAMS: SUPPORT EDUCATION

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HEPATITIS C VIRUS EMPOWERMENT GROUPS IN
METHADONE MAINTENANCE TREATMENT PROGRAMS
SUPPORTEDUCATIONADVOCACY 
Alain Litwin, MD, MPH Irene Soloway, RPA Frank
Medina, Peer Educator October 19, 2004
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• 4 million people
• in the United States are infected
• with the hepatitis C virus
• (HCV)

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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
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• 65-84 of methadone- maintained patients are
  infected with HCV

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Future HCV Disease Burdenin the United States
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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

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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.

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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)

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On-site HCV Treatment at AECOM/Montefiore MMTP

MMTP Site Article 28 facility Scant medical
infrastructure Staff Internist or FP,
PA Part-time psychiatrist Counselors, HIV
Coordinators, nursing, SW Services Opioid
agonist therapy Comprehensive on-site 1º
care General, HIV, HCV, Gyn Psych evaluation
and tx Support group Laboratory testing,
EKG Urine toxicology testing
Hospital Hepatologist Interventional
radiologist Pathologist EST, optho, etc.
Lab
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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

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Hepatitis C StartSupport / Empowerment Groups
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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.

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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.

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Support
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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
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From Florida to New York CityBecoming a
hepatitis c support group member
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What the Support Group has meant to me
Empowerment, education, motivation. A voice
within my own community
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• Evolution of a
• Support Group

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

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Location / Food
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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 ANNS, RESTAURANT IS BETWEEN
BERGEN AND BROOK, ACROSS FROM PARKING LOT)
TOPIC HEPATITIS C TRANSMISSION A COMMUNITY
DISCUSSION
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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
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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
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Galvanizing Event

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IMPORTANT MEETING Monday May 20 at
1130 !!!! AMERICAN LIVER FOUNDATION WALKATHON
1) registration/sponsor 2) telephone tree
3) the banner 4) the walk5) the movie6) the
party
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Group Identity Formed

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Starting Hepatitis C Support Groups Useful
Organizing Principles

• Become an expert on hepatitis C at your clinic
  (even if you arent one)
• Raise awareness of hepatitis C issues clinic wide
• - annuals/clinic visits/treatment plans
• - pamphlets (literature rack)
• - staff meetings
• - articles
• - grand rounds

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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

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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

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Sustaining a Support Group
Newsletters and the media can be important
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PEER EDUCATION A NATURAL OUTGROWTH OF SUPPORT
GROUP
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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

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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

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MEET HEPATITIS C PEER EDUCATORS FROM THE HUBS
BRONX LIVERATORS HEP C GROUP KNOWLEDGE IS
POWER FIGHT BACK AGAINST THE HCV EPIDEMIC
WHERE CD SOUTH CONFERENCE ROOM WHEN
TODAY!!!!!! THURSDAY MARCH 11 200 PM
PEER EDUCATION GRADUATION 230 PM HEP C
QUESTIONS AND ANSWERS





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

• Stipends for educators
• -20 per peer transportation
• Documentation attendance records
• Feedback from peer educators and host

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IMPLEMENTATION OF PEER EDUCATION

• Peers go out in pairs
• Props (plastic liver) and literature
• Peers educate both staff and patients

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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)

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• 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

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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)

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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

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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

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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

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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)

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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_HCV20pocket20gui
  de.pdf
• Clinicians Guide to HIV/HCV Co-infection and
  lots of other useful links