1. VETERAN'S ISSUES:
Dr. Leonard Seeff is working on educational protocols for the VA right now. They also are working on a Support/Educational/Screening protocol. Due to downsizing of the VA, getting funding is a big issue at this point. People must write to Congress asking them to stop cutting funding for the VA. Letters need to go out asking the VA to rate HCV for disability purposes as well.
2. TREATMENTS & ALTERNATIVE TREATMENTS:
HFI is putting more pressure on the NIH to fund research in the Alternative fields. Because there is no money in this kind of research, it is difficult to get researchers to do it. Since it is not known what is in most herbs-they are not regulated by the FDA, it is dangerous to take them without consulting a Dr. or a herbalist, or a nutritionist. Other alt. Treatment options are Holistic measures, and accupuncture. None of these have been studied so its not known if they truly work or not. Send letters to congress asking for research funding for herbal treatments.
3. ROLES OF SUPPORT GROUP LEADERS:
Discuss ALL treatment sources. Be sure members are aware of all their options and understand all the aspects of their choices before they decide what to do. Offer credible information and don't allow ‘he said/she said' to occur. Contact HFI to get info to share with the group concerning treatments. Ask the reps from Schering, AMGEN, and Roche for info on their treatments. Avoid allowing discussions of ‘home remedies' and ‘pity parties'. HFI has information is several languages to provide to group members. Remind members that they have EVERY RIGHT to ask questions of their Dr's. Have them require the Dr to give them copies of any and all bloodwork results as well as any tests done. Demand to be sent to a specialist. CHALLENGE PHYSICIANS!
Involve members in fundraising activities. Be resourceful in finding money. Pass around a donation box, remind members it is costly to provide copies, refreshments, postage for mailings. HFI can help with accquiring a 501C3 (non profit status). AMGEN gives grants for them as well. Ask the Drug reps what they can do for your group. Do NOT allow the reps to railroad you into being exclusive to any particular one. Stay neutral where they are concerned.
Remember that all Drug companies and most Dr's have their own agenda. Remind members of this when you have speakers. Have them gather all the info before making any decisions.
Educate your group members-Motivate them to get all the correct information regarding their HCV. Remind them that Positive Thinking is important to good mental health while living with a chronic illness.
4. HOW TO RUN MEETINGS:
Organize an agenda for each meeting. Stick to it. Have speakers come in for the first 45 minutes with questions at the end. If your meeting is 2 hours, have the second hour as Support Time. Break into groups of 15 or less to discuss what is going on with each member. Enlist members to help run the groups. Allow ideas to flow but do not allow them to drag on. Let each member get their turn to talk if they choose to. Ask your group what kind of meetings they want to have - what they expect from each meeting. Be sure the speaker or drug rep leaves the meeting before starting the support time. NEVER give out your member information to anyone - ie: drug reps, Dr's, any speakers you may have. Confidentiality is important and a leader's responsibility. If they wish to share their phone ## they can do it on their own. Educate members on the FUNCTIONS of the liver. Most people don't even know what it does much less what the Hep does to it.
5. LEADER "BURNOUT":
Ask for volunteers to help with planning meetings, calling members, bringing refreshments. Don't take on all the work yourself. Organize a telephone network among the members for people who have questions during the month. There is strength in numbers so ask for help!!
6. KEEPING MEMBERS INTERESTED:
Ask for ideas on speakers, involve the membership in the running of the meetings. Have speakers in who can give information on Insurance, SSDI, VA Disability and issues, SDI info, emotional issues.
7. RESEARCH & EDUCATION:
Write letters to Congress. Find out who the Legislative Aides for each Congressman in your state are. These are the people who write the legislation...the Congresspeople only pass the laws. If you meet the legislative aids, get 2 of their business cards. Keep one and send one to the HFI. They will mail them info and newsletters. Your group can also send the Congressman in your area info on HCV and your group as well.
8. EDUCATING DR's/HEALTH CARE PROFESSIONALS:
Send them patient information and medical information on how to treat a person with HCV. Order a copy of the CDC tape, which tells Dr's what to do if someone tests positive for HCV. Give them information about your group to give to their patients. Suggest a local Gastroenterologist come and do an inservice training for Family Care Physicians and their staff. Find out if your local Hospital has a Patient Advisory Council to assist in training Dr's. If there isn't one, find out if one can be started.
9. FUNDING YOUR GROUP - (SERVICES & NON-PROFIT):
Contact local drug reps and see what they will do to help your group. Ask the group for volunteers to help with telephoning members and raising money. Plan fund raisers to help finance your group. You can go to the ALF for backing, but they expect dues money from your group as well as a part of any money you raise in fundraisers. Contact other Group Leaders in your area and find out what they have done to get started. It is possible you can get your group in under another group's Non Profit Status. With Non Profit status you can get grant money from the drug companies for postage, educational materials, and supplies.
10. MEDIA AWARENESS:
Contact your local newspaper letting them know about your group. Offer to do an interview to inform the public about HCV and the facts. Be proactive and encourage your group members to be the same. Stop negative info by either writing to the editor, or news station/radio station, and give the proper information. Refer all negative or incorrect reports to the HFI for clarification.
11. MANAGING MISINFORMATION:
Form a ‘Kit' of information to pass out to Dr's, TV stations, Radio stations, and local newspapers. Provide correct and useful information as well as your group's name and meeting times. Offer to send them info and refer them to HFI for the correct info.
12. FOCUS ON MENTAL/EMOTIONAL ISSUES:
Have inspirational speakers and hospic speakers come in and talk to the group. Share ideas on how to cope with having a chronic illness and dealing with it. Develop a telephone network among the members for support during the month. Plan a Social evening and meet for dinner somewhere. Set up holiday parties that are for the soul purpose of relaxation and enjoyment.
13. FINDING NEUTRAL MEETING SITES:
Many people do not feel comfortable going to a church or hospital for meetings. Try the public library or contact local businesses and banks. Many offer free space in meeting rooms in their buildings. Local Community Centers usually charge for the space so you may wind up in a hospital anyway. Talk to the local Gastroenterologists and ask them if they can suggest someplace, in their building perhaps, to hold your meetings. Remember, they love support groups and usually have no problem helping you as much as they can.
For more information on starting a Support Group, contact the Hepatitis Foundational International. Their toll free number is: 1-800-890-0707 or go to their Website at: Hepatitis Foundation International
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