Hepatitis C Support Group
Hepatitis C is a blood-borne viral disease which can cause liver inflammation, fibrosis, cirrhosis and liver cancer. The hepatitis C virus (HCV) is spread by blood-to-blood contact with an infected person's blood. Many people with HCV infection have no symptoms and are unaware of the need to seek treatment. Hepatitis C infects an estimated 150-200 million people worldwide.
It is coming on February 13th and 14th. A outreach for all HCV infected people. Please visit www.LargestAmericanOutbreak.com for further details. It has arrived. yesssss This info profided by heartaftergod. And I thank you very much. How many of us can get to it?
-
theatre and I are there already. I'm having a very berry tea with crackers, cheese and cherry tomatoes and she's having a joint with some beer and we're both on really comfy recliners on thick pile carpet. we need some help with the decor if anyone is around??
-
I'm trying to exercise daily. I was doing fairly well until I sprained my ankle 2 weeks ago but now I'm getting back on the horse. Today I walked over a mile with my arm weights that are about 22lbs total. I was out of shape and it was hard on my arms. I also did my 30 situps. I'm also going to drink a lot of water and try to eat healthy. I do tend to have a sweet tooth but I'm cutting...
From: hepcunited [mailto:HEPCUNITED@LISTSERV.CRITPATH.ORG]On Behalf Of
EVELYN V MCKNIGHT
Sent: Wednesday, December 05, 2007 12:11 PM
To: HEPCUNITED@LISTSERV.CRITPATH.ORG
Subject: [HEPCUNITED] tell us about yourself
My name is Evelyn McKnight. I was infected with Hep C through reuse of
needles during chemotherapy in 2000. After a state investigation in 2002,
it was found that 100 cancer patients of the Fremont, Nebraska oncologist
contracted HCV. All of the lawsuits have now settled and therefore our gag
order has been lifted and we can finally talk about what happened to us.
A local lawyer, my husband (a family physician) and I have formed a 501c4
foundation for patient advocacy called HONOR (Hepatitis Outbreaks: National
OUtreach and Reform). Our website is www.LargestAmericanOutbreak.com.
We are neophytes at this whole advocacy thing and are finding there is much
to learn! Our purpose is to learn the lessons inherent in healthcare
associated infections and to lobby for reform so this tragedy does not
happen again. Unfortunately, we recently learned that a healthcare related
outbreak of HCV did recently happen on Long Island and in Michigan. A
particular interest of ours is to work towards national oversight of private
physicians' offices.
HONOR is hosting an Advocacy Conference in Washington, Dc on Feb 13 & 14.
It will be an opportunity for HCV outbreak victims to travel to DC and tell
their story to congressmen and ask for their support in legislating for
patient safety. If any of you are interested in joining us, watch for
details through our website or contact me directly.
Personally, I completed 6 months of interferon/ribarivin therapy in 2004 but
it was unfortunatley unsuccessful. I am trying to understand how my body
and HCV can peacefully co-exist but most of the time HCV seems to have the
upper hand. I have joint/muscle pain and fatigue that limits my daily
activities.
It is inspiring to read all of your stories. I look forward to a long and
productive relationship.
Evelyn McKnight
From: hepcunited [mailto:HEPCUNITED@LISTSERV.CRITPATH.ORG]On Behalf Of Ryan Clary
Sent: Wednesday, December 05, 2007 4:43 PM
To: HEPCUNITED@LISTSERV.CRITPATH.ORG
Subject: [HEPCUNITED] Conference call notes, etc.
Dear Hepatitis C Advocates UNITED!
Below are notes from our November 28th conference call. Thank you to everyone who was able to participate. We had a great discussion with new ideas on moving forward with our advocacy efforts. If you have corrections/changes/additions to the notes, please post them to the group or send to me directly.
Our next call will be in early January. We will send another survey to poll for date/time for this call.
One of our next actions will be a state letter campaign. More information is included in the notes. We will start this project right after the New Year.
Thank you to everyone who has posted an introduction to the group. Im amazed by the stories and so glad to be part of this effort with you!
--Ryan
Ryan Clary
Associate Director, Health Care Advocacy
Project Inform
205 13th Street, #2001
San Francisco, CA 94103
415-558-8669 x224 ph
415-558-0684 fax
rclary@projectinform.org
Hepatitis C Advocates UNITED!
Conference Call Notes
November 28, 2007
Personal Narrative Project:
HCAU members are encouraged to write a short email to the listserv introducing themselves. This will allow us to get to know one another better in the group. To post to the listserv, write to hepcunited@listserv.critpath.org.
Action item: Ryan has already written to the listserv about this and many people have posted their stories.
Hepatitis C Epidemic Control and Prevention Act Cosponsor Project:
Lorren provided some background on the development of this legislation. She stressed that it was born in the community and written by hepatitis C advocates. Roche has provided assistance with lobbying and the development of the legislation. However, it is a community bill and grassroots advocacy is needed for it to become law.
The process for making this bill law:
Currently, the House version of the bill is pending in the House Energy and Commerce Committees Subcommittee on Health. It will need to be passed by this subcommittee, then the full committee, then the full House of Representatives.
The Senate version of the bill is pending in the Senate Committee on Health, Labor, Education, and Pensions. It will need to be passed by this committee, then the full Senate.
If there are differences between the two versions, a conference committee made up of Senate and House members will meet and negotiate a final bill. If that is passed by the full House and Senate, it will go to the President for his signature or veto.
Right now, we need many more House and Senate cosponsors of the bill. The more cosponsors, the more likely the bill will be voted on in committee (or attached to another piece of legislation).
Everyone is encouraged to respond to the Alerts posted to the listserv and ask your two U.S. Senators and House Representative to cosponsor this bill. If you need any help with this action, please contact Ryan, rclary@projectinform.org, Gary, garyrrose@verizon.net, or Lorren, lorren@hepcchallenge.org. We know many of you are new to this type of advocacy and we are available to help however we can.
Suggestions offered by call participants:
You dont need to know all the details of the bill or stats about hepatitis C in order to ask their reps to cosponsor the bill.
The most important thing is to let them know you are a constituent and why the bill is important to you.
Personal stories are a very effective way of influencing our elected officials.
Practice delivering your story so that it is brief, personal, and states clearly what you want them to do.
You dont have to be too personal with your message. A simple statement like I have hepatitis C and I would like you to cosponsor this bill and take leadership in the fight against this disease is a powerful message.
Congress has done very little about hepatitis. There is a sense of urgency and they must hear from everyone.
Ask when you can expect an answer and make sure to follow up if you dont hear back from them.
Remember that these are citizen legislators. They are no different from any of us. They were elected to represent us and they need to hear what we want from them.
Many representatives will hold community meetings or open houses when they are on holiday break. Try calling their district office and asking about any upcoming meetings. This is a great opportunity to meet them and ask for their leadership.
After you call the D.C. office and talk to the healthcare staffperson about the bill, follow up with a call to the district office. It is often easier to develop a relationship with staff in the district office.
You can track the progress of this bill by going to www.thomas.gov or http://www.govtrack.us/. Enter the bill number (HR 2552 is the House version and S 1445 is the Senate version) and you can find a summary of the bill, the list of cosponsors, and latest actions.
We will also post to the entire listserv when there is a new cosponsor or if the bill is scheduled for any votes.
Other actions:
We agreed that we would develop a state letter campaign. HCAU members will volunteer to get signatures from individuals and organizations in their state to a letter asking Senators and Representatives from that state to cosponsor the bill. After getting signatures, the volunteers will send the letter to Ryan and he will make sure it is faxed to all the members of Congress from that state. This is a great organizing tool and way to educate others in your state about this issue.
Action item: Ryan will post to the listserv in early January and ask for volunteers for this project.
We will encourage pharmaceutical/diagnostic companies to have their reps bring Alerts about the bill when they visit medical providers. This will help get calls from doctors and other medical professionals to Congress.
Action item: Gary will check with Roche, Beverly will check with Schering Plough, Sharon will check with LabCorp. Orasure was represented on the call and is already working with Congress on the bill.
State reports:
Texas: Had a model state bill, now there is no funding. Got a harm reduction bill passed and a pilot program is starting. People should start talking to staff of state legislators. Many of them have a connection to hepatitis C. You can be effective by going to state capitol and introducing yourself. You also need to watch where money is going.
Georgia: Has completed a viral hepatitis strategic plan with the following components: education, primary/secondary prevention, clinical management, and surveillance/research. Each issue had a separate work group. As a result, got funding for hepatitis C testing, vaccinating inmates against hepatitis B, and working to get state funding for A and B testing, This session, advocates are having a lunch and learn with key committees and a statewide Hepatitis Awareness Day.
It was noted that 28 states have a strategic plan, but few have the funding to implement it. Georgia was congratulated for it success with the plan.
Partnering with Adult Viral Hepatitis Prevention Coordinators:
HCAU members are encouraged to contact their state Adult Viral Hepatitis Prevention Coordinator. These are state employees who oversee hepatitis programs. While they have restrictions on their own advocacy, they can help bring state advocates together and provide information for your efforts. Communication between advocates and coordinators is vital they will want to know what you are working on. You can find out who your coordinator is by going to http://www.hepcchallenge.org/map/usa_county/index.php and clicking your state. Or you can post to the listserv and someone will help you.
Next call:
To be scheduled in early January