Transcript Hepatitis C - Dora Weiner Foundation

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 methadonemaintained patients are
infected with HCV
Future HCV Disease Burden
in the United States
Need for liver transplantation
Decompensation
61%
68%
223%
Liver-related deaths
279%
HCC
528%
Cirrhosis
0%
100%
200%
300%
400%
500%
Estimated % increase by year 2008
600%
Predictions for 20102019
•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
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
Albert Einstein College of Medicine
Division of Substance Abuse
2003 Death Certificate Data
(81 deaths)
• 25% (20 patients) died from HCV with endstage 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
Del Sur del Bronx
Group Identity Formed
en movimiento
Albert
Einstein
School of
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
–
–
–
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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!!!!!!
2:00 PM
2:30 PM
THURSDAY MARCH 11
PEER EDUCATION GRADUATION
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]