June 30, 2010 OR within 3 years of first learning of Hepatitis C infection

They can contact the Hepatitis C Claims Centre at:

1.866.640.9994 or www.hepc8690.ca

(Also eligible to contact this centre are family members of HCV infected persons who are deceased).  Anyone who has never been tested for Hepatitis C and had a transfusion, received or took blood between these dates should consider a blood test ASAP.”

Radio Segment: Voices of People Living with Hepatitis C – Mon., May 10, 1:25 PM Eastern

Tune in on Monday, May 10 at 1:25 PM Eastern time to WBAI/Pacifica Radio (for those in the NY/NJ/CT area, at 99.5 FM; also streaming live worldwide at www.wbai.org), for a half-hour segment on current issues with hepatitis C. Bob Lederer, the co-host of “Health Action,” interviews hep C advocates Jules Levin, Executive Director of National AIDS Treatment Advocacy Project, www.natap.org, and David Crouch, hepatitis C advocate, Florence, CO, website manager of Janis and Friends, www.janis7hepc.com. The discussion includes current information regarding hepatitis C and treatment options, as well as the personal journeys of Jules and David as they have struggled with the disease.

For those unable to listen live, the audio of the program will be available on demand after the program at www.healthaction.info.

If you have any comments, you can email bob@healthaction.info.

Program notes:

May is National Hepatitis Awareness Month, and as we do each year here on Health Action, we’re going to focus today on hepatitis C, a growing problem that remains little known to the broad public. Hepatitis C is a liver disease caused by the hepatitis C virus (HCV). Hepatitis C is currently the leading cause of chronic liver disease in the U.S. and the most common indication for adult liver transplantation. HCV is known cause of liver cancer, the incidence of which has more than doubled in the last two decades and is expected to double again by 2020. Chronic hepatitis C is associated with increased risk for other medical conditions outside the liver including diabetes, kidney disease, lymphoma, and neuropsychological maladies.

The infection is spread by blood-to-blood contact with an infected person. HCV can be spread through contaminated needles, unsterilized tattoo or body piercing equipment, and shared toothbrushes, razors, nail clippers or other hygiene items that have HCV-infected blood on them. There is no vaccine against HCV.

The federal Centers for Disease Control and Prevention estimates that 5 million people in this country are infected with the hepatitis C virus, and that at least 20,000 new infections occur annually. The CDC also estimates that 50% to 75% of those infected are unaware that they’ve been infected.

We are now joined by two guests. First, in the studio with us is Jules Levin. Jules is a person living with both HIV infection and hepatitis C infection. He is the founder in 1995 and Executive Director of the New York-based National AIDS Treatment Advocacy Project or NATAP, established to educate people with HIV on making treatment decisions and to advocate for that community — in 2000 NATAP’s mission was broadened to include people with hepatitis C virus or HCV.  Jules contributes to most of the published materials that the organization produces and is the author of NATAP’s HCV and HCV/HIV Co-Infection Handbook. Several years ago he hosted and produced “Living Well with HIV and Hepatitis,” a weekly radio show on another New York station.  Thanks for being with us today, Jules.

We’re also joined on the phone from Denver, Colorado by David Crouch. Since being diagnosed with hepatitis C in 2003, he has become a patient advocate and helps manage a support forum for newly diagnosed individuals and people going through treatment worldwide. The forum, “Janis and Friends”  www.janis7hepc.com, offers information, emotional support and help in explaining lab and biopsy results in lay language.

Let me start with you, Jules Levin. You were diagnosed with HIV in 1995 and with HCV in 2000. Tell us about your journey and briefly what led you to found National AIDS Treatment Advocacy Project, which you later expanded to cover HCV.

Now turning to David Crouch, the hepatitis C advocate in Denver, you were diagnosed with hepatitis C with advanced cirrhosis in 2003. Tell us about your journey with hepatitis C.

[...]
I want to thank my engineer John Riley and also Betty Vega for production assistance.

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For more information, you can contact:

National AIDS Treatment Advocacy Project or NATAP, (212) 219-0106 and www.natap.org.

“Janis and Friends”  www.janis7hepc.com

Hepatitis C Support Project, http://www.hcvadvocate.org/hepatitis/factsheets.asp

Blog: The Many Faces of Hepatitis C, bettyhepatitisc.blogspot.com/

his blog is run by Betty Vega, a person living with HCV and a community advocate. Betty is looking for personal stories from New Yorkers about hepatitis C.  These will be added to her blog and used for outreach to legislators and media during this Hepatitis C Awareness Month. You can email your story to BettyV444@aol.com.

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Useful background articles:

from NATAP.org:

Aging of Hepatitis C Virus (HCV)-Infected Persons in the United States: A Multiple Cohort Model of HCV Prevalence and Disease Progression - (03/11/10)

Low SVR Rates for Hispanics & African-Americans in Inner City Clinic in the Bronx NY – pdf attached - (03/31/10) African-Americans & Latinos in the USA are NOT responsive to current therapies & very often do not receive current therapy

EASL: From Ash To Cure – EASL April 14-18 2010
new HCV therapies in development can cure almost evrryone in the USA including African-Americans & Latinos

FDA HCV Hearing on Early Access to New Drugs: report from Jules Levin - (05/04/10)

Hepatocellular Carcinoma — United States, 2001–2006 Weekly - (05/07/10)

EASL 45th Annual Meeting
(European Association for the Study of the Liver)
April 14-18, 2010
Vienna, Austria

Current state of hepatitis C treatment
From National Institute of Diabetes and Digestive and Kidney Diseases

http://digestive.niddk.nih.gov/ddiseases/pubs/chronichepc/

From American Liver Foundation

http://www.liverfoundation.org/education/info/hepatitisc/

Side effects of treatment
From American Liver Foundation website:

http://www.liverfoundation.org/education/info/hepatitisc/

HCV Therapy Fails in Many Urban Patients

From MedPage Today – March 29, 2010 http://www.medpagetoday.com/Gastroenterology/Hepatitis/19278

Minorities and Real World Treatment Results
From HCV Advocate Newsletter – May 2010

http://www.hcvadvocate.org/news/newsLetter/2010/advocate0510.html#1

FDA Considers Expanded Use of HCV Drugs
From MedPage Today – April 30, 2010

http://www.medpagetoday.com/InfectiousDisease/Hepatitis/19858

Nice to see Board members registered here as website users. Hopefully the Board will make optimum  use of this site and raise the Council’s profile in the public eye at the same time. I am looking forward to reading more newsletters to see what you are up to.

Take care,

Wendy

World Hepatitis Day is May 19th and the national World Hepatitis Day planning group is sponsoring a Canada-wide poster contest!  The deadline for submission is Tuesday April 13.  See the attached poster for all details – and happy creating!

Stay tuned for further announcements about World Hepatitis Day; these will posted on our website (bchepcouncil.ca) and we will send an email to each of you as well.  In the meantime, put your heads together in your community to plan an event or activities to mark World Hepatitis Day and focus attention on viral hepatitis.  These could include:

• Mall displays with information and prizes
• A press release with general information about hepatitis B and C and what it means in your community
• Workshops for youth, service providers or general public
• A proclamation from your village, town or city council proclaiming World Hepatitis Day in your community
• And other actions or events that you come up with!

We look forward to working with you to make this World Hepatitis Day a great success in your community and in British Columbia.

Warm regards,

Deb

People are replying to this article.

click here to read the blogs:

http://www.cbc.ca/canada/british-columbia/story/2010/03/02/bc-hepcbinging.html

I haven’t read through them all but do hope the Council will respond.

Also it would be helpful if you all kept the topic going here on this website. The more people see and read of this the sooner the government will be embartassed -well we can hope anyway.

Wendy

http://www.legacy.com/CAN/Obituaries.aspPage=LifeStory&PersonID=139315974

 Using footage of people recalling their personal experiences of one of the two diseases, the documentary will chart the positive stories of hope, achievement and success in the face of adversity, but also the impact the viruses can have on daily life for people living with hepatitis B and C.

To bring the one hour documentary successfully to life the WHA is seeking your support in identifying and filming patients for the documentary.  We are looking for compelling real life stories of individuals affected by hepatitis B and C.  The personal stories that we receive from you will be reviewed and a shortlist of patients will be invited to participate in the documentary. 

For further information please see the attached submission form, which should be completed and returned to contact@worldhepatitisalliance.org no later than Tuesday 26th January, 2010.

Please note: All of the information you submit will be treated as strictly confidential and the WHA will not share any of the details with any third parties.  If the person is chosen to be included in the documentary the WHA will ask the individual to sign a consent form, which will provide further details about their involvement in the campaign.

Kind regards,

Lorna Croft on behalf of the World Hepatitis Alliance

What limited community-based services there are for people living with HCV and coinfection are largely provided by ASOs, so cuts to them mean further limitations – or the disappearance of – those limited services.  Follow the link, sign the campaign, send a letter to show support of this important movement to Cancel the Cuts to community-based health service organizations, like ASOs, that provide important services to people living with or at-risk for HIV, AIDS and hepatitis C.