Hepatitis Support Groups By Location
Last Updated on June 4, 2020 by Shuvani Sanyal, MD
- Although most support groups focus on hepatitis C, the state-wide ALF chapters may be able to make referrals to groups that welcome hepatitis B patients as well.
Updates Not Found Elsewhere
- Howard University Viral Hepatitis Center/Support Group 2041 Georgia Avenue, Room 5J-15 Washington DC 20059 865-Hep1 www.hepatitis.howard.edu a traditional support group that meets every 4th Friday of each month from 10:00 am 11:30 am.
What We Need From Providers
Action! This is a huge opportunity to rid our state of the most common blood borne disease in the United States and now it is possible.
Effective immediately, we would like all providers licensed to treat HCV to screen and treat the target population. In order to support our provider community in this monumental effort, Apple Health has made important policy changes:
- The antiviral Mavyret no longer requires prior authorization . Other direct-acting antivirals will require review and will be approved only when Mavyret is not clinically appropriate.
- Anyone licensed to prescribe direct acting antiviral medications is allowed to screen and treat Apple Health members to support this effort.
National Patient Advisory Committee
Through the generous support of Gilead Sciences, ALF has launched its first National Patient Advisory Committee, comprised of 30 members who are living with or were cured of hepatitis C. These individuals will help guide ALFs communications activities around hepatitis C. On November 20 22, 2014, ALF brought together half of the group who participated in media training exercises and heard presentations about hepatitis C communications messaging and ALF public education activities. A meeting of the second half of the group was held in San Francisco in late January.
To be a hepatitis C patient advocate is to offer your time and energy to generate greater awareness about a disease that affects some four million Americans and try to effect policy changes in Washington for more research funding and services to support patients and families.
Thirty such individuals people living with or cured of hepatitis C were quick to volunteer, helping to launch the American Liver Foundations first National Patient Advisory Committee .
NPAC members are already putting what they learned into practice. Several have participated in a hepatitis C health education video series produced by WebMD and Everyday Health . This spring, some will travel to Washington, DC for a series of ALF advocacy activities and others have already participated in advocacy activities on the local level.
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Treatment For Hepatitis C
Treatments for hepatitis C have improved a lot in recent years and can result in you permanently clearing the virus. These newer medicines usually have very few side effects.
Once you are diagnosed with hepatitis C it is important to get a prompt referral to a specialist who can offer treatment . They can assess the type of virus , and your current liver health. This information will help them establish if you should start treatment and, if so, the best treatment course for you.
Clearing the hepatis C infection does not mean you are immune this means you should take precautions to minimise the risk of becoming re-infected.
Reliable Information And Helplines
Learning more about hep C may help you understand and manage it better. But be sure to stick with reliable sources.
Websites. âWe tell people that generally, websites that end in â.gov,â â.org,â or â.eduâ are best,â Hall says. Try the CDC and National Institutes of Health .
âOne very dependable source with lots of great information online, plus a toll-free number, is the American Liver Foundation, or the ALF ,â Palmer adds.
Hep C organizations. Many hep C organizations have a variety of support resources available online and over the phone.
- ALF Help Center . The ALF can answer your questions about your diagnosis, talk about your concerns, and help you find information, resources, and support through their support community.
- Help4Hep . You can find information and support for hep C at this nonprofit, toll-free helpline with peer-to-peer counselors. They can help you find doctors, low-cost clinics, support groups, financial help, and other resources.
- Hepatitis C Mentor & Support Group . âThe HCMSG was founded specifically to address the lack of awareness and support of people living with chronic hepatitis C,â says Michelle Barnett, a physician assistant at Associates in Gastroenterology in Colorado Springs, CO. âThey provide resources and services including one-on-one mentoring to patients with hepatitis C.â
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Conduct A Needs Assessment
A formal or informal needs assessment is essential to help with decisions you will have to make about group focus, format, meeting time, location, and group size. This needs assessment may range from a written survey of your patients to simply engaging several individuals in a discussion about what they would find helpful. As a start, you might use a variation of the support group feedback form contained in Appendix E to find out about patients’ interests.
Asking patients what they need is important do not assume that you already know what they want. Collect information about both the content of the group meetings and logistics . Veterans will have differing opinions as well, so you will have to go with what appears to meet the greatest need for the greatest number of patients. You can also talk with Hepatology providers about their impressions of their patients’ presenting concerns and how a group could help them.
NOTE: It is important to give yourself enough time to set up your new group. Try to allow for a 3-month lead time. It takes time to contact patients, and you will want to allow an adequate time frame to get the word out and attend to the details of establishing a new group.
Your Doctor And Other Professionals
Your medical team is part of your support system. Your primary care doctor, specialists, nurses, pharmacist, and other health care providers can address your questions and concerns and help you make decisions about your treatment.
Before each visit, write down a list of questions to ask your doctor. Between visits, reach out with any questions or concerns you may have.
To get the most support from your health care team, be open and honest. âNothing is gained by holding back information from your doctor,â Hall says. Tests and exams only tell part of the story. âPhysicians rely heavily on their patientsâ openness about their health,â he says.
If you donât feel comfortable talking openly with your doctor, it may be time to find a new one.
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Qualifying For Hepatitis C Support
So to qualify for accessing Hepatitis C treatment through the World Hepatitis C Support Project you simply have to state that you are in a low-income situation by telling us your monthly income and a little bit about your situation. Then we will supply the Hep C medication to you. For more information
When To See A Therapist
If you feel anxiety, depression, or loss of interest in things that used to give you pleasure, it may be a good idea to get professional help. Try talking to a professional counselor or therapist. Seeking professional help isnât a sign of weakness, Hall says. Itâs a sign of strength.
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Why Support Is Important With Hep C
With hep C, you may wonder what happens next. You may worry about how it will affect your health. You may feel isolated and unsure who you can talk to.
âEmotional support is hugely necessary,â says Dan Palmer, a 59-year-old singer/songwriter and video producer in Carson City, NV, who was diagnosed with hep C in his late 30s. After developing liver disease from hep C, Palmer had a liver transplant. In 2016, he was told he was cured.
âThereâs still a lot of stigma about hep C. People may believe youâre a drug user and that drug use is the source of your infection. That makes it hard to talk about,â Palmer says.
Finding the right support can help you find answers to your questions, feel less alone, and take better care of your health.
You can build a support network with your friends and family, your doctors and medical team, and the hepatitis C community.
What If I Need Financial Assistance To Pay For Treatment
If you need help to pay for your prescription medications, you may be eligible for patient assistance programs. The following organizations provide programs that directly reduce the cost of prescription drugs or can assist you in finding programs for which you are eligible.
AMERICAN LIVER FOUNDATION
The American Liver Foundations Financial Assistance Resource Support Guide is available for more information:
The American Liver Foundations Free Drug Discount Card can be used for prescription medications, over-the-counter medications and medical supplies. The card is available with no charge. For more information.
PHARMACEUTICAL PATIENT ASSISTANCE PROGRAMS
There are pharmaceutical company sponsored prescription assistance programs for specific drugs used to treat Hepatitis C. The drugs are listed below by their brand name:
To apply for drug assistance programs, you will likely be asked for the following information, so its helpful to have it handy before contacting these organizations:
- State of residence and zip code
- Estimated gross annual household income
- Number of people living in the household
- Brand name of the prescription medicines you have been prescribed
- Type of health insurance and/or prescription coverage, if any
- Name and contact information of your doctor who prescribed the medication
- All information discussed with people staffing patient assistance help lines is strictly confidential.
Patient Access Network Foundation
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Characteristics Of The Participants
A total of 290 patients were recruited by mail to meet the goal of 200 telephone interviews . The refusal rate was just 15.5 % most non-participation was due to unsuccessful follow-up contact. Due to differences in follow-up intensity required to accrue the target size per racial/ethnic group, the response rates differed: Asians 68.3 %, Blacks 81.3 %, Hispanics 66.7 %, and non-Hispanic Whites 60.9 %. Patient characteristics such as gender, age, provider type, time since treatment, or treatment response did not vary between participants and non-participants. Similar numbers of non-Hispanic White, Black, Asian, and Hispanic patients participated, as did five who identified themselves as Native American.
Table 1 details the demographic and selected clinical characteristics of the study population overall and among the four targeted racial/ethnic groups. More than half of patients were working full-time at the start of treatment. Of those, 41.5 % were doing manual or physical labor. A small portion of patients reported taking a leave of absence or modifying their work hours prior to treatment initiation. Educational level varied by race/ethnicity notably, almost 60 % of Hispanic patients reported educational levels of high school or less. Annual household income did not vary significantly between groups.
Medstar Georgetown Transplant Institute Liver Transplant Support Group
Please note that all meetings will be held virtually via Zoom until further notice.
Audience: Liver patients can share their transplant experiences and ask questions. All adult patients, families, and caregivers are welcome to join.
Why: The transplant process is both mentally and physically draining. Meeting others who are in a similar situation can be helpful and motivating.
When: Usually the third week, alternating between Mondays and Thursdays, 5:30 6:30 p.m.
Contact: Monica Hanza, MSW, LGSWPhone: 202-444-0439
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Treatment Of Chronic Hepatitis C Infection
For clinicians treating chronic hepatitis C infection. Material covered includes recommendations for treatment-naïve and treatment-experienced persons with chronic HCV infection genotypes 1-6, based on the Association for the Study of Liver Diseases and Infectious Diseases Society of America HCV Guidance.
Expert opinions for challenging and controversial cases
Implement A Feedback Function
Debriefing Between Facilitators
Facilitators should meet immediately after the group, even if only for 10 minutes, to discuss what happened and develop plans for followup. Here are some topics you may want to cover during your debriefing:
- Clinical issues requiring followup
- Process issues in the group
- Case formulations and intervention plans: developing therapeutic plans for individual participants and the group as a whole
- Follow up list of unanswered participant questions or requests for more information
- Process issues between facilitators: mutual feedback, examining countertransference , reaching agreements on practices, handling particular situations, responding to particular requests
Evaluating the Session
Using a standardized feedback form at the close of every group offers continuous feedback from participants to shape the group to their needs. Ideally, feedback should address four key aspects:
- Structure — length, meeting times, formats
- Process — facilitation style, issues between participants
- Content — topics for guest speakers or focused discussions
- Expected outcomes — how will group participants use the information
Once you solicit a group’s feedback, it is extremely important to use that information. Let the group know at the outset that their feedback shapes the group, and then show them their feedback matters by altering the group accordingly.
Flexibility and Creativity
Reminder Calls and Letters
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Recruitment And Interview Process
Based on race/ethnicity from administrative and clinical records, health plan members treated for hepatitis C in the years 20082010 were 62 % White non-Hispanic, 9 % Black, 12 % Asian, 14 % Hispanic, and 3 % Native American. Our goal was to recruit 200 patients with approximately equal representation of the four largest racial/ethnic groups. We recruited by mail all eligible Asians and Blacks because of the limited number of potential participants and we contacted a random sample of eligible non-Hispanic Whites and Hispanics. To reach the target, we contacted 63 Asians, 64 Blacks, 84 Hispanics, and 69 non-Hispanic Whites. If no response was received within 2 weeks, telephone contact was attempted up to three times. Patients were offered a US$20 gift card for participation.
Because participants resided within in a large geographic range, telephone survey methods were used. Interviews were conducted by a single investigator from April 2010 to May 2011. Informed consent was obtained verbally prior to each interview. Ms. Murphy is an experienced hepatitis researcher, having conducted almost 500 telephone and direct interviews with viral hepatitis patients for previous studies.
Support Groups And Online Communities
Many people with hep C find emotional support through online communities and support groups.
âInteracting with other people with hepatitis C can make you feel less alone,â says Barnett, who has worked with people with hep C for 20 years.
Palmer says attending in-person support groups has been very helpful throughout his journey. Talking to other group members has given him a variety of insights that he wouldnât have without the group.
To find a support group or community, reach out to the ALF or HCMSG. âThe ALF maintains an online support forum and has links to in-person support groups in most states,â Barnett says. âThe HCMSG provides resources and services like one-on-one mentoring for patients with hepatitis C.â
You can also find support groups on social media. âIâm a member of several closed groups on Facebook,â Palmer says. Since questions, answers, and discussions are only seen by group members, people tend to share freely, he says. The groups have been a steady source of insight, encouragement, and inspiration.
To get the most out of an online community or support group, itâs best to share as openly as you can. If you feel embarrassed or worried, remember that the people in your support community arenât there to judge you. Theyâre there to share experiences and advice to help you live better.
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Hep C Support November 2020
I found your email, your blogs and your Facebook Hep C Support group very reassuring during my recent three months treatment with Zepatier on the UKs NHS. I havent been a poster on your Facebook groups pages but have been an avid reader and admire the work and dedication that you put into the support you give people like me.
I think that the best thing you did for me was give me hope at a time when all I knew was despair, so, by way of thanks, I have donated to your fund and would be happy to explore other ways to support your work further. I also wanted to share my remarkable progress, which I am very happy for you to share anonymously on any of your forums if you think it would help anyone.
So thank you, Greg. You have been an immensely important part of my recovery so far. If you need any help here in the UK, let me know.
Hepatitis B Online Support Groups
For immediate assistance with general mental health or a crisis, in the U.S. you can call 988, and globally you can find resources here.
There are several good Internet Support Group Listservs dedicated to hepatitis B. These Lists provide emotional support and practical help for those living with hepatitis B. There are also organizations that can refer individuals to traditional in-person support groups.
Internet Support Groups
HepBCommunity.org is a global peer-led, volunteer-driven forum to support those living with and affected by hep B supported by the Hepatitis B Foundation and Westmead Hospital Foundation . We are dedicated to connecting people affected by hep B with each other and with verified experts in the field who provide trustworthy and accurate advice.
HBV Adoption Support List
Adoptive or biological parents of children living with hepatitis B are invited to participate. This is a restricted list to protect the privacy of parents and children, and requires pre-approval by the list owners to join. Update: This group has moved to Facebook and is currently set to private. Please email email@example.com for more information.
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