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Alain Litwin, MD, MPHAlain Litwin, MD, MPHIrene Soloway, RPAIrene Soloway, RPA
Frank Medina, Peer Educator Frank Medina, Peer Educator
October 19, 2004October 19, 2004
HEPATITIS C VIRUS HEPATITIS C VIRUS EMPOWERMENT GROUPS IN EMPOWERMENT GROUPS IN
METHADONE MAINTENANCE TREATMENT PROGRAMSMETHADONE MAINTENANCE TREATMENT PROGRAMS:
SUPPORTSUPPORTEDUCATIONEDUCATIONADVOCACYADVOCACY
4 million people4 million people
in the United States are infectedin the United States are infected
with the hepatitis C viruswith the hepatitis C virus
(HCV)(HCV)
Sources of Infection for Sources of Infection for Persons with Hepatitis CPersons with Hepatitis C
Sexual 15%
Other* 5%
Unknown 10%
Injecting drug use 60%
Transfusion 10%(before screening)
*In a medical setting; healthcare work; perinatal
Source: Centers for Disease Control and Prevention
65%-84% of methadone- 65%-84% of methadone- maintained patients are infected maintained patients are infected
with HCVwith HCV
Future HCV Disease BurdenFuture HCV Disease Burdenin the United Statesin the United States
528%
279%
223%
68%
61%
0% 100% 200% 300% 400% 500% 600%
Estimated % increase by year 2008
Cirrhosis
HCC
Liver-related deaths
Decompensation
Need for liver transplantation
Predictions for 2010-2019Predictions 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 Integrating HCV care with MMT at AECOM/MontefioreAECOM/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 facilityScant medical infrastructure
Staff: Internist or FP, PAPart-time psychiatristCounselors, HIV Coordinators,nursing, SW
Services: Opioid agonist therapyComprehensive on-site 1º care
General, HIV, HCV, GynPsych evaluation and txSupport group Laboratory testing, EKGUrine toxicology testing
HospitalHepatologistInterventional radiologistPathologistEST, optho, etc.
Lab
Albert Einstein College of Medicine Albert Einstein College of Medicine Division of Substance Abuse Division of Substance Abuse 2003 Death Certificate Data2003 Death Certificate Data
(81 deaths)(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 Hepatitis C
StartStartSupport / Empowerment GroupsSupport / 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.”
EducationEducation
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.
SupportSupport
AdvocacyAdvocacy
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 meWhat the Support Group has meant to me
Empowerment, education, motivation. A voice within my own community
Evolution of aEvolution of a
Support GroupSupport Group
HUB 1 Hepatitis Meeting 1:
COMMON QUESTIONS ABOUT HEPATITISIrene 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
COMMON QUESTIONS ABOUT HEPATITIS (cont.)Irene Soloway Physician Assistant Hub 1
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
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
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
FIRST GROUPFIRST GROUP
Starting with Starting with the Clinical Relationshipthe Clinical Relationship
Inform patients who are concerned about their hepatitis status about the support group as soon as the first medical visit.
Identify Core LeadershipIdentify Core LeadershipEvery 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 / FoodLocation / Food
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
Create interesting flyers to promote meetings.
HUB TRIPLEX HEPATITIS C
SUPPORT GROUP MEETINGMONDAY JUNE 21
12 PM-1 PMHUB 1 BASEMENT
ALL ARE WELCOMETOPIC: METHADONE AND HEPATITIS: MYTHS
AND REALITIES:
HUB TRIPLEX HEPATITIS C MEETINGMONDAY APRIL 19 12 -2 PM
HUB 1 CONFERENCE ROOM
TOPIC: ALCOHOL AND THE LIVERFIGHT BACK AGAINST THE HCV EPIDEMIC
ALL ARE WELCOME
Galvanizing EventGalvanizing Event
IMPORTANT MEETING Monday May 20 at 11:30 !!!!
AMERICAN LIVER FOUNDATION WALKATHON 1) registration/sponsor $$$
2) telephone tree 3) the banner
4) the walk5) the movie6) the party
Group Identity FormedGroup Identity Formed
Del
Sur
del
Bro
nx
en movimiento
Albert Einstein
School of Medicine
Starting Hepatitis C Support Groups: Starting Hepatitis C Support Groups: Useful Organizing PrinciplesUseful 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: Starting Hepatitis C Support Groups: Useful Organizing PrinciplesUseful 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: Starting Hepatitis C Support Groups: Useful Organizing PrinciplesUseful 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 GroupSustaining a Support GroupSustaining a Support GroupSustaining 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 GRADUATION2:30 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 Peer Program (2/2004-10/2004)(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 Peer Educators Motivated to Care for ThemselvesCare 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 Peer Educators Motivated to Care for ThemselvesCare for Themselves
• Renewed focus on recovery
• Active users take steps towards abstinence and sustained recovery
• Renewed focus on relapse prevention
Peer Educators Motivate Peer Educators Motivate OthersOthers
• 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 Literaturehttp://www.ci.nyc.ny.us/html/doh/home.htmlNYC 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.htmlhttp://www.uchsc.edu/mpaetc/HIV_HCV%20pocket%20guide.pdf[Clinician’s Guide to HIV/HCV Co-infection and lots of other useful links]