Showing posts with label support. Show all posts
Showing posts with label support. Show all posts

Monday, January 5, 2015

Patient Advocate Foundation Offers New CareLine for Hepatitis C Patients

Patient Advocate Foundation Offers New CareLine for Hepatitis C Patients 

 PAF aims to expand care for Hepatitis C patients by offering a new toll-free CareLine providing personalized case management support.

HAMPTON, Va., Jan. 5, 2015 (GLOBE NEWSWIRE) -- Patient Advocate Foundation (PAF) – a national, non-profit organization providing professional case management services to patients facing healthcare access issues, is pleased to announce the launch of a new Hepatitis C CareLine, providing individualized, sustained assistance to patients diagnosed with Hepatitis C. The CareLine will provide help to patients across the country to resolve healthcare access and insurance issues, at no charge to the patient.

This new program joins Patient Advocate Foundation's existing suite of CareLine programs, furthering PAF's commitment to helping patients with chronic, debilitating or life-threatening illness navigate the healthcare industry. In 2013, Hepatitis diagnoses ranked in PAF's top ten list of diseases reported by patients seeking help through the case management team. Through the Hepatitis C CareLine, dedicated case managers will serve as a direct resource for Hepatitis C patients assisting them with benefit coordination, educational and financial resources, help accessing the latest available treatment, navigation through the appeals and reimbursement processes, as well as other patient services. This new program joins Patient Advocate Foundation's existing copayment support for Hepatitis B and Hepatitis C patients offered through its Co-Pay Relief program.

"Patient Advocate Foundation is committed to helping Hepatitis C patients maintain financial stability while consistently accessing needed treatments and prescribed medical care," says PAF CEO, Alan Balch, Ph.D. "By directly connecting Hepatitis C patients with the correct resources and negotiating on their behalf, we believe PAF can make a difference for patients in the Hepatitis C community."

Any patient or medical provider interested in learning more about Patient Advocate Foundation's Hepatitis C CareLine should call 800-532-5274 or visit hepatitisc.pafcareline.org/. The CareLine will offer live service to patients Monday through Thursday from 8:30 AM – 8:00 PM ET and Friday from 8:30 AM – 7:00 PM ET. Bi-lingual case managers are available to assist Spanish speaking callers.

For more information about Patient Advocate Foundation and their mission to improve healthcare access to all patients, please visit www.patientadvocate.org.

About Patient Advocate Foundation (PAF)
Patient Advocate Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability. PAF services are available to all patients, patient families, and medical professionals without charge. Patient Advocate Foundation serves patients from all 50 states, and has physical locations at many of the top patient referral states including Texas, Florida, California, and Virginia. Erin Singleton, 757-952-0561

See more 

Friday, October 3, 2014

Be Hip To Hep: Dispelling old myths and discovering the hopes for those with hepatitis C

Be Hip To Hep: Dispelling old myths and discovering the hopes for those with hepatitis C

Good morning folks, over at DentistryIQ an insightful article about living with hepatitis C now available for your reading pleasure.

Dr. Muñoz, professor of English at Cosumnes River College writes from a patients perspective about living with HCV.

The article offers information about; diagnosis, transmission/sexual transmission, risk factors, blood tests, stigma - "In addition to work difficulties, my personal life disintegrated. I felt a sense of shame as I listened to a friend unwittingly joke how Pamela Anderson was repulsive. Not because of her famously exaggerated cup size, but rather (and solely) because she had the misfortune of contracting HCV." as well as treatment, and advice for persons living with the virus.

Be hip to hep

Dispelling old myths and discovering the hopes for those with hepatitis C

BY HEIDI EMMERLING MUÑOZ, PhD

"You have hepatitis C."

Those words turned my life upside down. I tell this story not to elicit sympathy but to illustrate what it means to live with hepatitis C (HCV): the physical as well as the emotional. Only now, because I am out of clinical hygiene and because there is a cure in sight, do I feel safe in telling my story.

I also tell this story to urge screening and to give hope to anyone living with HCV.
Continue reading....

Tuesday, April 1, 2014

Karen Hoyt: Your Best Friends Guide To Hepatitis C


HCV Advocate Karen Hoyt

Meet the creator of; Your Best Friends Guide To Hepatitis C, Karen Hoyt, an inspirational woman, HCV advocate, and author who is living with hepatitis C and cirrhosis. Karen embraces life with an infectious spirit she generously shares online with you, her friends. With her blog Karen has created a safe haven for anyone living with this sometimes cruel and unpredictable illness. Exuding pure devotion Karen gently guides us through each HCV test, symptom, and every emotion this disease has to offer.

In addition to her blog, IhelpC.com, a series of four exceptional videos appropriately deemed "True Champions" featuring Karen were recently launched by HealthiNation. If you haven't seen them you're in for a treat. 

True Champions: Hepatitis C Videos

In each of these video segments Karen takes us on an incredible journey beginning with her own battle with HCV.  In the video "Advocates" Karen interviews author Lucinda Porter, another loved and respected HCV advocate who has educated our community for over a decade. 

Begin Here........... 

Stay connected with both Karen and Lucinda on Twitter

    Saturday, October 5, 2013

    Lucinda K. Porter, RN: Hepatitis C Treatment One Step at a Time

    Hepatitis C Treatment One Step at a Time

    From the mid-1990s Lucinda K. Porter, RN, has devoted consistent and generous time as a hepatitis C advocate, educator, and author. Ms. Porter has written for numerous publications including a monthly health column for HCV Advocate.

    The author's work has provided a global audience with facts, information, and skills needed to actively navigate conflicting and at times confusing research about the virus. This acquired knowledge has helped countless people eventually come to terms with their disease and explore all possible treatment options.

    Ms. Lucinda K. Porter the author of "Free from Hepatitis C" has graced the HCV community with a second book "Hepatitis C Treatment One Step at a Time".

    The timing of the book couldn't be more perfect. With screening strategies in place by the CDC and Task Force which recommend all people born from 1945 through 1965 get tested one time for hepatitis C, and new drugs moving through the final stages of FDA approval - the need for a guide during HCV therapy is paramount.

    This comprehensive book provides tips for people starting hepatitis C treatment while slowly dissipating the fear of the unknown.

    Some commonly asked questions are addressed such as; Will I be able to work during treatment? What about the side effects? How will these drugs make me feel? When will I know treatment is working?

    Coping with the challenges of therapy may seem impossible at first, but getting to the finish line is made easier with each turn of the page. The author takes us on a physical and emotional journey of spiritual strength.

    Porter offers what our families or physicians can not, advice on treatment from a patients perspective. She has undergone therapy twice before, and is currently awaiting the outcome from a third attempt.

    The former Stanford nurse understands what is needed to succeed and thrive during the sometimes grueling days of treatment. The reader is gently cradled through therapy with daily advice, inspirational quotes, and encouragement. With each day of treatment a new bit of information awaits, starting with the first day which continues through 48 weeks.

    The HCV community is fortunate to have such a compassionate expert offering us a personal guide through treatment. Ms. Porter's calm voice can be felt strongly throughout the book, a presence that will surely be reassuring to the reader.

    Hepatitis C Treatment One Step at a Time is now available for your consideration, an excerpt is offered on the author's website.

    Tina Banwart
    HCV New Drugs

    Tuesday, September 10, 2013

    HealthKeep, an Anonymous Social Network




    Medgadget Exclusive
     
    HealthKeep, an Anonymous Social Network [Interview]

    by Shiv Gaglani on Sep 10, 2013 • 10:09 am
     
    Earlier this year a new patient-focused social network called HealthKeep went live. It’s not like most social networks though: users remain completely anonymous.  
    Essentially a patient’s Facebook, without the faces, or names for that matter. We had the opportunity to speak with HealthKeep’s co-founder, Soyoung Hwang, about the site, its origins, and its goals.  
    Shiv Gaglani, Medgadget: What is HealthKeep? 
    Soyoung Hwang: HealthKeep (HK) is an anonymous social network available via the web and mobile devices that (1) provides a safe platform for people to share health experiences, learn from others who can relate, and find a support community; and (2) represents a dataset that can offer value by promoting improvements in delivery of care and greater clinical research and understanding....
     
    Continue reading @ Medgadget
    HealthKeep website…
     
     

    Monday, July 1, 2013

    Hepatitis C News Team Launch New Online Hep C TV Channel

     (PRWEB) July 01, 2013

    The team behind HepatitisCNews.com, an online community for those living with hepatitis C, has launched Hep C TV, a weekly online news channel.

    Hep C TV from HepatitisCNews.com will feature news, views and updates on hep C from around the world. Also on offer is a regular Ask the Expert slot fronted by Dr Matthew Foxton, consultant hepatologist with London’s Chelsea & Westminster Hospital, as well as regular interviews with key figures from leading patient organisations and support groups, real-life stories from those living with hep C and updates on treatment advancements.

    Hepatitis C is a liver disease that affects around 150 million people worldwide. Often referred to as a silent disease, as in most cases it does not result in any symptoms, hepatitis C is most commonly transmitted through contact with an infected person’s blood. The hepatitis C virus can cause serious damage to the liver and, if left untreated, can result in scarring of the liver, liver disease or even death.

    Launched in December 2012, HepatitisCNews.com offers those living with hepatitis C the opportunity to share their real-life experiences and tips with each other.

    For further information, visit http://www.hepatitiscnews.com or http://www.youtube.com/hepatitiscnewsteam.

    Thursday, March 7, 2013

    Newly Diagnosed -Where do you begin to search for hepatitis C information on the Internet?

    When diagnosed with a serious disease such as hepatitis C, it's normal to feel completely out of  control. Life as you know it has changed.

    The initial diagnosis is nothing less then traumatic, what ensues is a unexpected life adjustment, but not before going through several challenging phases. The first phase for me was shock, then came the denial, fear, and eventually acceptance. Not until the latter was achieved was I able to begin my journey to wellness and regain back some control over my life.

    After testing positive for HCV most of us imagine the worst-case scenario, which is easily validated after spending a few hours online pouring over conflicting research. Although, some of the information provided to us is reliable and up to date; some is not. Today, I hope to point the newly diagnosed in the right direction by providing a few substantial links to relevant HCV information.

    Where do you begin to search for hepatitis C information on the Internet?
    Knowing the buzz words or the key words are essential for a successful search. Let us begin at the beginning - with the natural history of hepatitis C.

    *Reference applies to HCV-positive untreated population.  

    So What Will I Find Out About Hepatitis C?
    The Natural History Of Hepatitis C - Topics will include the following

    1- The acute phase of hepatitis C - Acute hepatitis C infection involves short-term illness that happens within the first six months after a person has been exposed to the HCV virus.

    2-What spontaneous viral clearance means- Approximately 25% of patients acutely infected with HCV will clear the virus spontaneously, and 70-85% of patients will develop chronic infection.

    3- All about chronic hepatitis C - A persistent hepatitis C infection with periodic evidence of HCV RNA in the blood for at least 6 months.

    4-  Symptoms

    5-Extrahepatic conditions - Conditions outside the liver associated with Hepatitis C infection. Several extrahepatic complications have been associated with HCV including hematologic and dermatologic diseases as well as autoimmune and kidney diseases.

    6- Finally, information on disease progression and how host factors influence the progression - The rate of disease progression in hepatitis C infection is influenced by both virus- and host  

    A Few Links To Get You Started
    Review
    2006 - The Natural History of Hepatitis C Virus (HCV) Infection

    Natural History Of Hepatitis C
    2013 - A collection of articles and research 

    What About Liver Health, Support and Treatment?
    Provided below are helpful links to additional information on HCV including: Testing, disease progression, liver health, diet, transmission, books, videos, treatment with current direct-acting antivirals and investigational antivirals, lastly support.

    What  to do with a positive hep C test 
     Lynn Rapsilber, MSN, ANP-BC, APRN
    September 13, 2012
    HCV antibody testing is sensitive and inexpensive. Anti-HCV screening assays include the enzyme immunoassay (EIA) or the enhanced chemiluminescence immunoassay (CIA). Positive results are reportable and should be confirmed with a repeat test. The recombinant immnunoblot assay (RIBA), a more specific serologic anti-HCV assay, is no longer used. Once the antibody test is positive, HCV-polymerase chain reaction (PCR) RNA test measures how much HCV is in the bloodstream. 

    Continue reading........ 

    May 20, 2012
    Hepatitis C Testing- the Fine Print
    A positive Hep C Antibody test (the screening test) cannot tell you how long you have been infected. More testing is now required. The next step will be to have a different blood test that measures "viral load"- actually looking for the amount of Hep C virus present in your system. Other blood tests will measure your liver "function" to see if it looks inflamed. Your doctor may also test to determine the subtype of Hep C in order to better advise you regarding the potential response to therapy. By the way, All positive tests for Hep C will be reported to the health department. This should not to make you paranoid, as your insurance company will obviously know as well, but simply something to note.
    Continue reading.. 

    The Disease 
    Liver disease in people with hepatitis C affects everyone differently, while it may progress slowly in most people, it can also progress quickly in others. A few host factors including duration of infection, co-infection with HBV or HIV, age, race, gender, genotype, alcohol use, smoking, other underlying disease (diabetes), all have an impact on liver disease progression.

    Beyond the Basic: Understanding Hepatitis C

    Clinical Features of Hepatitis C Virus Carriers With Persistently Normal Alanine Aminotransferase Levels

    Conditions outside the liver associated with Hepatitis C infection

    The High Comorbidity Burden of the Hepatitis C Virus Infected Population in the United States
    Chronic hepatitis C (HCV) disease can be complicated with comorbid conditions that may impact treatment eligibility and outcomes.  The aim of the study was to systematically review comorbidities and symptoms in an HCV infected population, specifically assessing  comorbidities associated with HCV anti-viral treatment and disease, as well as comparing comorbidities between an HCV infected  and uninfected control  population

    Liver Health - 2013

    Meal consumption confounds liver stiffness measurements in patients with chronic HCV

    Hepatitis C-Moderate, excessive or heavy alcohol consumption:each is significantly associated with increased mortality

    Coffee and Liver Disease

    Consumption of coffee associated with reduced risk of liver cancer: a meta-analysis

    Some Omega-3 Oils Better Than Others for Protection Against Liver Disease

    Binge drinking can dramatically amplify damage to the liver

    Ways You Can Take Care of Your Liver

    Managing Your Medications

    Natural Approaches to Hepatitis C and Liver Health

    Diet
    Dr. Galati- Watch: Is there a Special Diet for Hepatitis C?

    HCV Education - CME activities
    HCV-Education
    Includes CME activities in various media formats covering the following topics: treatment regimens, resistance, current direct-acting antivirals, investigational antivirals, interferon alfa-free regimens, effects of HCV on the liver, diet,drug-drug interactions, and managing side-effects

    Transmission
    Sexual transmission of HCV among monogamous heterosexual couples: The HCV partners study

    Need Some Answers?
    Updated 2012
    Best List Of HCV FAQs
    Informational site providing resources, education, and support for the hepatitis C community.
    168 Pages Of Hepatitis C FAQs

    Treatment
    A ‘Killer’ of a Reason to Treat Hepatitis C
    Dr. David Johnson stresses the importance of treating patients with hepatitis C and advanced hepatic fibrosis, given that those with sustained treatment response have a lower all-cause mortality rate.

    Update on the Management and Treatment of Hepatitis C Virus Infection
    Recommendations from the Hepatitis C Resource Center and the National Hepatitis C Program Office, May 2012

    Guidance for Hepatitis C Treatment Monitoring
    Monitoring Patients on Pegylated Interferon + Ribavirin ± Protease Inhibitor (Boceprevir or Telaprevir), March 2012

    An Update on Treatment of Genotype 1 Chronic Hepatitis C Virus Infection: 2011 Practice Guideline by the American Association for the Study of Liver Diseases
    Ghany MC, Nelson, DR, Strader, DB, et al. Hepatology, Vol. 54, No. 4, 2011, 1433-1444.

    Potential IFN-Free Regimens For HCV
    Enthusiasm is growing for the various interferon (IFN)-free therapies on the horizon for patients with hepatitis C virus (HCV) infection. At the recent annual meeting of the American Association for the Study of Liver Diseases (AASLD), The Liver Meeting 2012, four of the six late-breaking abstracts and a slew of other studies discussed new oral regimens that can be used to achieve high rates of sustained virologic response (SVR) in a variety of HCV patient cohorts, including null responders.

    Current Prospects for Interferon-free Treatment of Hepatitis C in 2012
    Numerous other DAAs are in clinical development, and phases 2 and 3 trials are evaluating interferon-free combination DAA therapy. Interferon-free sustained virologic responses have now been achieved with combinations of asunaprevir and daclatasvir; sofosbuvir and ribavirin; sofosbuvir and daclatasvir; faldaprevir and BI207127; ABT-450, ritonovir and ABT-333; ABT-450, ritonovir and ABT-072; miracitabine, danoprevir and ritonavir; and alisporivir and ribavirin. Some drugs are genotype-specific in their activity, whereas others are pan-genotypic, and differential responses for the genotype 1 subtypes 1a and 1b have emerged with many DAA combinations. Viral breakthrough and resistance are important considerations for future trial design. The prospect of interferon-free combination DAA therapy for hepatitis C virus is now finally becoming a reality.

    Treatment Action Group publishes Guide to  Clinical Trials for  People With Hepatitis C
    There are many new hepatitis C drugs being  studied in clinical trials. People with hepatitis C have many options to choose  from. Whether you have hepatitis C or another medical condition, deciding to  participate in a clinical trial can be complicated. Having more information can  help you decide whether or not to participate in a clinical trial, and which  trial, or trials, may be right for you....

    Do I Need To Treat? Should I Wait? Or Treat Now?
    Treat Now or Wait?
    The debate rather to treat HCV now or wait is ongoing, in the journal "Liver International" factors which affect the decision to treat now or delay therapy are discussed.  

    Excerpt From The Article-
    When deciding whether to treat a patient with HCV now, or to defer treatment, most clinicians would decide to treat patients with bridging fibrosis and cirrhosis (Metavir stages 3 and 4) now because they have an increased risk of hepatic decompensation and hepatocellular carcinoma. There is a feeling by many that patients with less severe fibrosis can wait for better or less toxic therapies. The irony of this approach is that HCV treatment is more successful in patients with mild than advanced fibrosis. This is true whatever the baseline factors including genotype, race and IL28B status and whether patients are being treated with PEG-IFN/RBV dual therapy or triple therapy with a protease inhibitor [2-5]. Future HCV treatments will probably also be less effective in patients with advanced fibrosis and cirrhosis. Excluding patients with mild fibrosis from treatment now will only reduce the overall SVR rate in the treated population, increase the overall cost per SVR, and most importantly increase the risk that a patient who could be ‘cured’ of HCV now fails to achieve SVR in the future.

    View the article here: Patients with HCV and F1 and F2 fibrosis: treat now or wait?

    Updated March 2013
    A collection of articles available @ Hepatitis C New Drug Research and Liver Health:
    Chronic hepatitis C: Treat or wait?

    Where Can You Find An Easy To Understand Website With Accurate Information ?
    HCV Advocate is the go to site for all your questions, filled with information, news, HeathWise articles, fact sheets, new drugs currently in the pipeline, clinical trials, and a monthly newsletter.

    The Links
    HeathWise articles can be found in the HCV Advocate Newsletter, Fact Sheets , HCV Drug Pipeline , News Updates , Clinical Trials, and Hepatitis C -Everything You Need to Know

    Personal Experience
    Lucinda K. Porter, RN
    Starting 12 weeks of sofosbuvir, GS-5885, and ribavirin

    Defeating Hep C
    Contracted HCV genotype 1a via blood transfusion during chemotherapy treatment for leukemia at age 12 (acute myelocytic leukemia). 

    Books
    Lucinda K. Porter, RN:
    FREE FROM HEPATITIS C

    Coming in September 2013
    A second book authored by Lucinda K. Porter, RN:
    Hepatitis C Treatment One Step at a Time: Inspirational Readings and Practical Tips for Successful Hepatitis C Treatment

    Curing Hepatitis C - View Chapter 6
    Curing Hepatitis C, View Chapter 6: The Future of HCV Treatment-Beyond Triple Therapy
    Chapter six of the new book "Curing Hepatitis C" written by Gregory T. Everson, M.D. is available for downloading.
    To order the book click here. 

    Multimedia
    For the hands on reader check out the Multimedia section of the web site. This page contains udpated HCV educational podcasts, and videos.

    Hepatitis C – What Are Your Treatment Choices: New Webinar
    If you have hepatitis C and need more information on your treatment choices, there is a new tool available on the American Liver Foundation Hepatitis C website. Watch as Dr. Joseph K. Lim, Associate Professor of Medicine and Director of the Yale Viral Hepatitis Program at the Yale University School of Medicine shares with you treatment options for viral Hepatitis C.

    Need To Talk To Someone ?
    Help is available, recently "Project Inform" announced the launch of a new national helpline, 877-HELP-4-HEP (877-435-7443), run by and for people affected by hepatitis C. The helpline operates Monday through Friday 9am to 7pm EST. To learn more, visit www.help4hep.org or email info@help4hep.org.

    Online Support - Message Boards
    HCV Support
    "HCV Support gives me the strength, knowledge and support that I need to fight this disease. The members genuinely care about one another and they completely understand how you feel."
     
    Thanks to all the members who are an integral part of the community, MedHelp has become a destination for people looking for answers to their medical questions. As the community has grown, so has the number of questions on the site. While the top community members devote time each day to helping others get answers or support in their time of need, there seem to always be more questions than answers.
     
    Hepatitis Central
    Hepatitis-Central is providing this board only as a forum for discussions on hepatitis, treatments, etc.
    This message board will allow you to keep in touch with other patients, or caregivers, exchange ideas, as well as give and receive support.
     
    Discuss Hepatitis C with others who understand what you're going through
     
    Help, Support and Information For Those Affected By Hepatitis C
    Have Questions About Hepatitis?
     
    Articles, general discussions relating to Hep C and treatment
     
    Yahoo HepCWarriors
    This group is for ALL PEOPLE AFFECTED BY HEPATITIS C (HCV), who spend time researching the web for info on Hep C. We are "Web Warriors". We fight the "dragon" with a vengeance. Knowledge is vital to surviving or defeating Hepatitis C. HepCWebWarriors is is a valuable resource for the latest HCV news, published papers, treatment and new drug trials.

    Hep Mag
    Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

    May you find a way to manage the uncertainty and new changes this disease can bring. Wishing you a successful and safe journey.


    Thursday, February 14, 2013

    In The Spotlight - The Hepatitis Foundation of New Zealand

    In The Spotlight

    The Hepatitis Foundation of NZ
     
     
    In New Zealand, an estimated 50,000 people are currently infected with chronic hepatitis C. However, less than 25 per cent of those infected have been diagnosed.
     
    With timely diagnosis and appropriate course of treatment, in many cases, hepatitis C can be successfully treated and cured.
     
    Support is available in a range of modes and formats; this website provides access to many of these.
     
    Hep Central offers a portal to information and support for people living with hepatitis C, people who may be at risk, and professionals working in the field of hepatitis C.
     
    Podcast
    Episode 15 of the Podcast Series Available
    The latest episode in our podcast series (Episode 15: Foundation Update) is now available. Join the Foundation's Education Officer - Matt Walker - as he hosts this series on hepatitis C, the Foundation, and the Hepatitis C Pilot.
    Click here to begin....

    Hep C Chat Forum
    Here, you can chat online to others about hepatitis C, ask questions, or share advice and information
     
    Welcome to our Q and A section
     
    Here, you can submit questions about hepatitis C anonymously. Once submitted, your question will be directed to a hepatitis nurse who will attempt to answer the question and post the answer on this page as soon as possible.
     
    Please note: if we cannot understand the nature or direction of the question we may be unable to answer it. If you do not see an answer to your question posted here within 48 hours, we may not have been able to answer your question.
     
    If we cannot answer your question, you can contact the Hepatitis Helpline for information and advice.
     
    For further information and/or support contact us, or, let us know what you think - we welcome feedback from all visitors.

    Check Out Hep Central here.......

    Wednesday, February 6, 2013

    New Patient Focused Website - Liver Cancer Connect

    Launch of New Patient-Focused Website at LiverCancerConnect.org.

    To provide accurate, easy-to-understand information to people diagnosed with liver cancer, the Hepatitis B Foundation has created the first patient-focused website, www.LiverCancerConnect.org.

    The website aims to help people better understand how liver cancer is diagnosed and how it can be treated or prevented.  In addition, wwwLiverCancerConnect.org includes a Drug Watch of potential new liver cancer therapies, an expanding directory of liver cancer specialists, and a clinical trials listing.

    Read More @ Hepatitis B Foundation

    The Foundation invites you to use www.LiverCancerConnect.org to learn about liver cancer and its treatment options, and to locate liver cancer specialists and clinical trials. We welcome your feedback and suggestions at connect@livercancerconnect.org so that we may continue to build on this valuable resource for the global liver cancer community.

    Liver Cancer Connect is available on Facebook and Twitter. Join LCC on Facebook at http://www.facebook.com/LiverCancerConnect and follow LCC on twitter with the handle @LiverCancerConn.

    Tuesday, January 29, 2013

    Hepatitis Connect Presents An Interview With Alan Franciscus

    Hepatitis C Connect
     
    As once a patient myself, I understand the importance of finding the right HCV website that offers accurate information and support.
     
    Once this is accomplished, its easier to overcome the anxiety, fear, and medical obstacles faced after being diagnosed with this life-altering disease. 
     
    Hepatitis Connect is that site, a fresh resource for hepatitis C news, original articles and current information.  By joining Hepatitis Connect readers can connect with others and discuss  therapy, clinical trials or simply find support.  
     
    Recently offered at Hepatitis Connect is an interview by patient advocate John Lavitt with the remarkable Alan Franciscus, Editor-in-Chief at HCV Advocate. You won't want to miss this three part series.
     
    An Interview with Alan Franciscus of the Hepatitis C Support Project
     
    There is a very good argument to be made that Alan Franciscus is the most significant trailblazer in his work for the hepatitis C awareness and advocacy movement in the United States. In 1997, Alan founded the Hepatitis C Support Project (HCSP) to help support and advocate for people affected by hepatitis C, hepatitis B, and HIV and hepatitis coinfections. HCSP has generated several essential support services and informational resources that have become an invaluable part of the current HCV landscape in America.
     

    Thursday, January 10, 2013

    Hepatitis C Toll Free Helplines and Online Support


    HELP-4-HEP
    A new national toll-free helpline has been launched for people affected by hepatitis C:
    877-HELP-4-HEP (877-435-7443).

    This new consumer-run helpline is staffed by specially trained peer counselors Monday through Friday, 9am to 7pm EST to provide emotional support, health information, and referrals.

    HELP-4-HEP is a partnership among several well-known and nationally recognized nonprofits with a combined 90+ years’ experience in hepatitis C education, support and patient advocacy.
    Your call is completely confidential.

    American Liver Foundation
    Hepatitis C Helpline 800-465-4837 (800-GO-LIVER)
    M-F 9am-7pm EST
    In addition, questions sent on e-mail to info@liverfoundation.org will be promptly answered.
     
    Hep C Connection
    Offers a helpline to answer your questions regarding hepatitis C: 1-800-522-4372.
    HIV/AIDS/Hepatitis C Nightline: Hotline providing support for people with HIV or hepatitis C and their caregivers during the evening and nightime hours. Call 800-273-AIDS or 415-434-AIDS, 5 pm - 5 am Pacific time. Also offers Spanish-language hotline at: 800-303-SIDA or 415-989-5212.

    *Hep C Connection is a proud partner of The Support Partnership.
    877-HELP-4-HEP (877-435-7443).


    Massachusetts Department of Public Health
    Hepatitis C Hotline - 1-888-443-HepC (4372)

    Hepatitis NSW - Australian state of New South Wales
    To speak to a Hepatitis Helpline worker, please phone:
    9332 1599 (Sydney)
    1800 803 990 (regional NSW)
    The Hepatitis Helpline is open Monday to Friday, 9am to 5pm. Outside these hours, we have a recorded information service and people are able to leave a message requesting Helpline staff call back. We also answer questions via email, just CLICK HERE >>

    Online Support - Message Boards

    HCV Support
    "HCV Support gives me the strength, knowledge and support that I need to fight this disease. The members genuinely care about one another and they completely understand how you feel."
     
    Thanks to all the members who are an integral part of the community, MedHelp has become a destination for people looking for answers to their medical questions. As the community has grown, so has the number of questions on the site. While the top community members devote time each day to helping others get answers or support in their time of need, there seem to always be more questions than answers.
     
    Hepatitis Central
    Hepatitis-Central is providing this board only as a forum for discussions on hepatitis, treatments, etc.
    This message board will allow you to keep in touch with other patients, or caregivers, exchange ideas, as well as give and receive support.
     
    Discuss Hepatitis C with others who understand what you're going through
     
    Help, Support and Information For Those Affected By Hepatitis C
    Have Questions About Hepatitis?
     
    Articles, general discussions relating to Hep C and treatment
     
    Yahoo HepCWarriors
    This group is for ALL PEOPLE AFFECTED BY HEPATITIS C (HCV), who spend time researching the web for info on Hep C. We are "Web Warriors". We fight the "dragon" with a vengeance. Knowledge is vital to surviving or defeating Hepatitis C. HepCWebWarriors is is a valuable resource for the latest HCV news, published papers, treatment and new drug trials.

    Hep Mag
    Welcome to the Hep Forums, a round-the-clock discussion area for people who have Hepatitis B, C or a co-infection, their friends and family and others with questions about hepatitis and liver health. Check in frequently to read what others have to say, post your comments, and hopefully learn more about how you can reach your own health goals.

    Links To HCV Support On Facebook and Twitter
    Social Media 
     
    Website
     
    Helping healthcare providers (HCPs) and advocates improve the lives of people with Hep C through education, information, and understanding.

    Links on the website include:
     

    *Sponsored by Boehringer Ingelheim
     

    Friday, November 9, 2012

    Boehringer Ingelheim Launches Hepatitis C Website


    Boehringer Ingelheim Launches Hepatitis C Online Resource

    HepCRedefined.com aims to help HCPs and advocates improve lives of people living with hepatitis C through education, information and understanding

    Ridgefield, CT, November 9, 2012 – Boehringer Ingelheim Pharmaceuticals, Inc. today announced the launch of HepCRedefined.com, an online portal to help improve the lives of those living with the hepatitis C virus (HCV) through education, information and understanding. HepCRedefined.com aims to redefine the HCV journey by providing downloadable and shareable resources to healthcare providers, advocates, caregivers and patients.

    In order to bring together information that is most relevant to those impacted by HCV, the portal was developed in close collaboration with HCV community advocates as well as healthcare practitioners who are currently treating HCV patients. Resources available on the portal can be shared via social media channels, embedded on other web sources and viewed on various smart devices.

    HCV is an infectious disease of the liver and is a leading cause of chronic liver disease, transplant and failure that affects as many as 150 million people globally. Since 1999 there has been a significant increase in deaths due to chronic HCV, accounting for 15,000 deaths in the United Sates in 2007.

    “The entire HCV community is in need of simple tools and resources to talk about the disease in an informed, supportive way. There is information about HCV across the web, but HepCRedefined.com is designed to aggregate straightforward and accurate information in a single virtual destination,” said Michael Ninburg, Executive Director, Hepatitis Education Project. “I’m proud to have contributed to the development of HepCRedefined.com and look forward to working with other advocates to reach communities nationwide.”

    HepCRedefined.com offers tips and tools to facilitate discussion about HCV, including:
    A video series for healthcare providers offering tips on support sources, clinic program highlights and patient diaries
    A comprehensive and interactive checklist tool to help patients manage considerations of being in care and getting ready for treatment
    A frequently asked questions section about the spread of HCV
    A key facts page about HCV mortality
    A page featuring multiple at-a-glance information cards covering topics about patients and the disease itself designed to help debunk myths surrounding HCV
    A community “C Pledge” where healthcare providers, patients and caregivers can take an oath to redefine the patient journey and the way HCV is perceived

    “Boehringer Ingelheim understands that the HCV journey can be a difficult process for patients, caregivers, healthcare providers and advocates alike,” said Steve Smith, Vice President Established Brands, Boehringer Ingelheim Pharmaceuticals, Inc. “Through our work with the HCV community to develop HepCRedefined.com, we hope to offer support to the many individuals impacted by HCV with useful information and interactive resources that are easy to find. The more we empower ourselves to learn about the challenges associated with HCV, the better we will be able to provide patient management and come closer to a cure for this disease.”

    To learn more about HCV and support resources, please visit www.HepCRedefined.com.

    About Boehringer Ingelheim Pharmaceuticals, Inc.
    Boehringer Ingelheim Pharmaceuticals, Inc., based in Ridgefield, CT, is the largest U.S. subsidiary of Boehringer Ingelheim Corporation (Ridgefield, CT) and a member of the Boehringer Ingelheim group of companies.

    The Boehringer Ingelheim group is one of the world’s 20 leading pharmaceutical companies. Headquartered in Ingelheim, Germany, it operates globally with 145 affiliates and more than 42,000 employees. Since it was founded in 1885, the family-owned company has been committed to researching, developing, manufacturing and marketing novel products of high therapeutic value for human and veterinary medicine.

    As a central element of its culture, Boehringer Ingelheim pledges to act socially responsible. Involvement in social projects, caring for employees and their families, and providing equal opportunities for all employees form the foundation of the global operations. Mutual cooperation and respect as well as environmental protection and sustainability are intrinsic factors in all of Boehringer Ingelheim’s endeavors.

    For more information, please visit http://us.boehringer-ingelheim.com and follow us on Twitter at http://twitter.com/boehringerus.

    Wednesday, October 31, 2012

    Two Hep C Questions: What will happen to me? Should I go on treatment?: new booklet

    imageTwo Hep C Questions: What will happen to me? Should I go on treatment?: new booklet

    Wednesday, 31 October 2012 13:41

    This new booklet from Hepatitis NSW, ‘Two Hep C Questions: What will happen to me? Should I go on treatment?’ ("2Qs") aims to help people make good decisions about their health. It provides a guide to long term hep C health outcome and is intended for use by people affected by hep C and their GP, liver specialist or treatment CNC (Clinical Nurse Consultant).

    People with hepatitis C mightn't feel ill and may not think the booklet relates to them but liver disease can occur, though, without major symptoms of illness. Hepatitis NSW recommends people to use this booklet, working with their healthcare providers in order to assess what condition their liver is in.
    The booklet has been designed to appeal to all key priority populations and the wider general community. It is about a person's hep C journey: their illness outcome and treatment, and how to best care for their liver.

    Click here to download booklet.
    Click here to download order form for bulk copies.

    To order single copies, contact the NSW Hepatitis Helpline, ph 1800 803 990.

    Source

    Wednesday, October 24, 2012

    Hepatitis C–What Are Your Treatment Choices: New Webinar

    Hepatitis C – What Are Your Treatment Choices: New Webinar
     
    If you have hepatitis C and need more information on your treatment choices, there is a new tool available on the American Liver Foundation Hepatitis C website. Watch as Dr. Joseph K. Lim, Associate Professor of Medicine and Director of the Yale Viral Hepatitis Program at the Yale University School of Medicine shares with you treatment options for viral Hepatitis C.
    /
    o





    http://hepc.liverfoundation.org/taking-action/what-are-my-options-for-treatment

    Sunday, October 21, 2012

    Hepatitis C-What if I need Financial Assistance to Pay for Treatment?

    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 Foundation’s Financial Assistance Resource Support Guide is available for more information: Download

    Needy Meds

    Needy Meds is a nonprofit organization whose mission is to help people who cannot afford medicine or health care costs.

    Program

    Needy Meds has a patient assistance program database for patients to search for medications they are taking or need: http://www.needymeds.org/program_list.taf. The Needy Meds Drug Discount Card provides savings on prescription medicines and over-the-counter medications. For more information…

    Eligibility

    For the Needy Meds Drug Discount Card, there are no income, insurance or residency requirements, and no fees or registration process to use the card. Eligibility varies by program.
    Contact Information

    Needy Meds
    P.O. Box 219
    Gloucester, MA 01931
    Website

    Partnership for Prescription Assistance

    The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage to access the medicines they need.

    Program

    The Partnership for Prescription Assistance has an online prescription assistance program finder

    Eligibility

    Eligibility depends on the patient assistance program. Application
    Contact Information

    Partnership for Prescription Assistance
    Phone: 1-888-477-2669
    Website

    State Pharmaceutical Assistance Programs

    Many states offer subsidies to provide pharmaceutical coverage or a discount program for prescriptions to eligible individuals.
    Program

    For information on what programs are provided in each state…

    Eligibility

    Eligibility requirements vary from state to state. For more details…
    Contact Information

    Contact information varies by state. For more details…

    Together Rx Access

    Together Rx Access assists eligible patients with obtaining discounted prescriptions.
    Program

    The Together Rx Access Card provides savings on prescriptions to eligible patients in the US and Puerto Rico. For a list of medications covered…

    Eligibility

    Eligibility requirements can be found here. Application
    Contact Information

    Together Rx Access
    PO Box 9426 Wilmington, DE 19809-9944
    Phone: 1-800-444-4106
    Website

    Additional organizations include:

    RxAssist offers a comprehensive database of patient assistance programs, as well as news and practical tools. Visit them on the Web. [link to: http://rxassist.org]

    RxOutreach is a mail order pharmacy for people with little to no health insurance coverage. Visit them on the Web. [link to: http://www.rxoutreach.org]

    Patient Access Network is a non-profit organization that provides assistance to under-insured people for their out-of-pocket expenses for life-saving medications. Visit them on the Web. [link to: www.panfoundation.org]

    Chronic Disease Fund is a non-profit charitable organization that helps people with chronic disease, cancer and other life-altering conditions obtain the life-savings medications they need. Visit them on the Web. [link to: http://www.cdfund.org]

    There are also pharmaceutical company sponsored prescription assistance programs for specific drugs used to treat Hepatitis C. The drugs are listed below by their brand name:

    Victrelis and PegIntron
    Merck ACT Program – Reimbursement Services and Patient Assistance Programs
    866-363-6379
    www.merckhelps.com

    Incivek
    Vertex Patient Assistance
    855-846-2484
    www.incivek.com

    Pegasys and Copegus
    Genentech Assistance
    888-941-3331
    www.genentechaccesssolutions.com

    To apply for drug assistance programs you will likely be asked for the following information, so it’s 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.

    http://hepc.liverfoundation.org/support/what-if-i-need-financial-assistance-to-pay-for-treatment

    Also See - Patient Assistance Programs

    Tuesday, October 2, 2012

    Webcast - HCV triple therapy adherence and important healthy choices

    A Teaching Visit Focused on Making Healthful Diet and Wellness Choices  
     
    Each month this blog will point readers to new education-related information on hepatitis C. Today over at "Projects In Knowledge" readers will find a webcast led by Tiffany A. Taskaya, PA-C, CCRC., discussing adherence and important healthy choices while undergoing hepatitis C triple therapy with boceprevir or telaprevir. Although, like any site offering continuing medical education (CME), it requires a free quick registration.
     
    Tips on navigating the website

    1-Click on the link below, or go directing to the website. This link will take readers to the first page of the CME index, participants will be prompted to log on or register after clicking on the "Next Button"
     
    
    
    2-Once you log on a pretest is made available, participant's have the option to skip the pretest and go directly to the CME by clicking - "No thanks, Proceed to the activity" - located at the bottom of the page - or use the navigation buttons and click on "Activity" to launch the webcast.
     

     
    Publish Date: Sep 29, 2012
     
    Hepatitis C — A Teaching Visit Focused on Making Healthful Diet and Wellness Choices – Webcast
    ,Log in to this webcast and witness a teaching visit led by Tiffany A. Taskaya, PA-C, CCRC. As she presents to and talks with a patient, Ms. Taskaya will model for you how to teach your HCV-infected patients about adherence and making healthy choices while on boceprevir or telaprevir triple therapy. Learn what ... .....
    Log in to this webcast and witness a teaching visit led by Tiffany A. Taskaya, PA-C, CCRC. As she presents to and talks with a patient, Ms. Taskaya will model for you how to teach your HCV-infected patients about adherence and making healthy choices while on boceprevir or telaprevir triple therapy. Learn what you need to teach your patients about taking their medicine, diet, alcohol, exercise, and work issues. “An HCV Teaching Visit Focused on Adherence and Healthful Wellness Choices” is one course in the HCV Care & Guidance: Practical Education and Resources program.
     
    Topics covered in the CME




     

    Sunday, September 9, 2012

    Hepatitis C Newsletters and Blogs

    HCV Newsletters

    HepCBC has been busy redesigning their awesome website, please take the time to check out their progress.

    Today HepCBC published the July/August and September 2012 issues of the hepc.bull Newsletter.

    HepCBC’s MONTHLY NEWSLETTER, the hepc.bull, has been “Canada’s hepatitis C journal” since the late 1990′s and has been published nonstop since 2001.

    It contains the latest research results, government policy changes, activities and campaigns you can get involved in, articles by patients and caregivers, and a list of support groups plus other useful links.
    SIGN UP for free EMAIL hepc.bull and occasional email notices from HepCBC. Confidential.

    Hepatitis C Newsletter @ hepc.bull


    Newsletters

    Transmission News
    Allan Shoebridge / To the Editor
    A Friend with Hep C / Hep C in the News
    HepCBC AGM & Marathon
    Hep C on the Internet
    PegCARE/PegAssist/Neupogen/
    Coming Up

    Hep C in the News
    WHD 2012 Events in BC
    HEP C 101 for Baby Boomers
    HepCBC AGM & Marathon
    Hep C on the Internet
    PegCARE/PegAssist/Neupogen/
    Coming Up

    September Issue

    In This Issue:

    Alan Franciscus, Editor-in-Chief

    Lucinda K. Porter, RN



    Alan Franciscus, Editor-in-Chief

    Beginning with our first issue in December of 1994, HEP has published its newsletter, HEPNews. Leslie Franz has been our newsletter editor for most of that time, and continues today to do an outstanding job keeping up with the latest in hepatitis information and making sure that our members see it as well.

    GI & Hepatology News is the official newspaper of the AGA Institute and provides the gastroenterologist with timely and relevant news and commentary about clinical developments and about the impact of health-care policy.

    Signup for Hep's email newsletter and keep with the
    latest info to help keep your liver healthy.

    Monthly Pubmed Review of the most relevant research on HCV
    2012 June Pubmed Literature Review

    Our newsletter is sent out for free electronically on the 1st of every month.

    Hepatitis C Blogs

    My Journey on Triple Therapy for Hepatitis C
    Latest Blog Entry: Sept 14

    Life Beyond Hepatitis C 
    Latest Blog Entry: Sept 7
    This is Week 21 Video Update for Hepatitis C Treatment using the protease inhibitor, Incivek (telaprivir), Peg Interferon and Ribavirin. Also using Procrit injections once a week. New blood work results shows great news and side effect treatment information. Treatment completion date coming soon.

    Oh My Aches And Pains
    Latest Blog Entry: Sept 6

    Defeating Hep C
    Latest Blog Entry: August 30

    Living With HCV 
    Latest Blog Entry: June 28

    Hepatitis Foundation 
    Latest Blog Entry: August 12

    Social Networking


    Hepatitis C Information

    Friday, August 17, 2012

    Recording Hepatitis C: Listen To A Patient's Treatment Journal


    Recording Hepatitis C: A Patient's Treatment Journal



    The Centers for Disease Control and Prevention now recommends all baby boomers get tested for Hepatitis C. The infection, which one in 30 boomers is expected to have, causes serious liver disease
    including cancer

     

    Tuesday, August 14, 2012

    Curing Hepatitis C, View Chapter 6: The Future of HCV Treatment-Beyond Triple Therapy


    Curing Hepatitis C

    Chapter six of the new book "Curing Hepatitis C" written by Gregory T. Everson, M.D. is available for downloading.

    *Curing Hepatitis C will go on sale August 21, for more information or to pre-order the book  click here.



    Curing Hepatitis C, Chapter 6: Current and Future Options for Treatment
    The Future of HCV Treatment - Beyond Triple Therapy

    Topics discussed in chapter six

    • Status of Clinical Investigation into Future HCV Therapies
    • Next Generation Triple Therapy
    • Lambda interferon
    • Inhibitors of NS3/4A protease
    • Inhibitors of NS5B polymerase
    • Inhibitors of NS5A protein
    • Interferon-Free Regimens
    • Mericitabine plus danoprevir
    • Daclatasvir plus BMS-650032
    • BI-201335 plus BI-207127 ± ribavirin
    • GS-7977 plus ribavirin
    • Genotype 1b versus 1a
    • QUAD Therapy
    • Daclatasvir plus BMS-650032 plus peginterferon/ribavirin
    • Telaprevir plus VX-222 plus peginterferon/ribavirin
    • Host-Acting Antivirals
    • Cyclophyllin inhibitors
    • Entry blockers
    • Micro-RNA inhibitors
    • Viral Resistance
    • Concluding Remarks
    .
    Download PDF

    Provided by ALF

    Available wherever books are sold. In stores 8/21/2012

    Author: Gregory T. Everson, M.D., F.A.C.P.
    Originally published in Hatherleigh Press. Distributed through Random House.

    In a breakthrough publication, leading hepatologist and hepatitis C expert Gregory Everson, M.D. provides state-of-the-science information to guide patients through the diagnosis and treatment of hepatitis C. Until recently, hepatitis C was considered incurable. "Curing Hepatitis C" outlines the new treatment protocols that offer the outcome of complete cure from this disease.

    "Curing Hepatitis C" provides an indispensable and comprehensive overview for the nearly 160 million people worldwide and 4 million Americans diagnosed with hepatitis C. Perhaps most importantly, "Curing Hepatitis C" provides hope.

    Author's Statement
    “Hedy Weinberg and I wrote five editions of 'Living with Hepatitis C: A Survivor’s Guide' for the purpose of providing patients and caregivers a resource that could serve as an authoritative readily-available resource. I provided the medical information and Hedy provided the patient perspective by interviewing many patients with HCV to provide a personal connection for the reader. In this new book, I have focused on issues and questions related to the current new standard of treatment, Triple Therapy, and the exciting emerging therapies. As treatment continues to improve, eradication of HCV infection will become increasingly common – the new paradigm will be living without, not with, hepatitis C. Perhaps I am overly optimistic, but I believe that it is entirely possible that the emerging treatments will be so potent and effective that nearly every patient with chronic hepatitis C may be cured by future antiviral therapies!”
    Gregory T. Everson, M.D.

    Curing Hepatitis C: Current and Future Options for Treatment
    Written by Gregory T. Everson, Foreword by Gene Schiff
    Published by Hatherleigh Press
    ISBN: 978-1-57826-425-4
    Distributed through Random House.
    Available wherever books are sold. In stores 8/21/2012.

    http://www.liverfoundation.org/chapters/pacificnw/doctorsnotes/curinghepatitsc/