Thursday, April 9, 2015

Hepatitis Newsletters: Preparing For Hepatitis C Treatment

Hepatitis Newsletters: Preparing  For Hepatitis C Treatment

Hello everyone, welcome to this month's collection of Newsletters and today's news.  

Patients First - Preparing For Hepatitis C Treatment

In this months issue of HCV Advocates Newsletter, Alan Franciscus has written a two part article loaded with information about preparing for treatment. Part one will include helpful information about prescription coverage, out-of-pocket expenses, finding support and so much more.

Coming Soon
Make sure you don't miss part 2 of the article focusing on medical tests, medications and managing side effects.

Scroll down to "Overview — Preparing for Treatment: Part 1" for more information. 

In addition, a few days ago RCGPHCV Action, together with The Hepatitis C Trust, released an amazing four section video about HCV. Although the video is aimed at medical professionals in the UK, patients will benefit greatly by watching the video as well. Grab a snack, kick back and listen to an array of physicians discuss treatment options in this patient friendly video.

Posted  below under "HCV Action - Film puts Hep C in the spotlight." is a full description of all four sections.

April Updates 
The European Association for the Study of the Liver (EASL) annual meeting will be held in Vienna, Austria, from April 22-26.

The ILC 2015 abstracts have been published, click here to view the oral abstracts and here for poster abstracts. 

New To Hepatitis C? 

Need Help Finding Those Abstracts?
Viewing Poster Abstracts
Navigating tips for first time users

Need Help Understanding an Abstract?
Reading – and understanding – an abstract can be very challenging because there are so many pieces of information to put together, like in a puzzle. This fact sheet focuses on tips for reading and understanding an abstract.

EASL - Stay Connected on Facebook and Twitter.


Today's News and Research

April 10, 2015
Why you should care about hep C
Hep C often leads to cirrhosis and liver cancer: the risk of cirrhosis is 41% at 30 years, and the lifetime risk is 50% to 60% higher, explained Feld. But the big challenge with liver disease is, it has no symptoms in its early stages. “People don’t really have a sense that they have a problem.” 
Current guidelines suggest monitoring for those in the early stages of the disease and only moving to treatment in the later stages, which might mean lower costs for private payers. But “being told you’re not sick enough for therapy is hard for patients to accept,” said Feld.

The World Health Organization recently announced that it was seeking input on the three global health sector strategies — HIV and AIDS, viral hepatitis and sexually transmitted infection — it was drafting until April 30. The strategies, which will cover 2016-2021, will be finalized at the 69th World Health Assembly in 2016.

Among the three health issues, viral hepatitis has arguably received the least attention. According to Jennifer Johnston, executive director of the Coalition to Eradicate Viral Hepatitis in Asia Pacific, viral hepatitis is the eighth highest cause of mortality around the world, causing around 1.4 million deaths from acute infection and hepatitis-related liver cancer and cirrhosis every year. It is a toll comparable to that of HIV and tuberculosis, and yet funding to combat viral hepatitis has significantly paled.

Full Text Article:
Increased eligibility for treatment of chronic hepatitis C infection with shortened duration of therapy: Implications for access to care and elimination strategies in Canada.
All oral, highly effective direct-acting antiviral combinations, such as sofosbuvir-ledipasvir, have recently been licensed in Canada but cost as much as $67,000 for a 12-week course of therapy, representing a major economic barrier to predominately single-payer health care systems such as that found in Ontario. In hepatitis C virus (HCV) genotype 1 noncirrhotic patients with a baseline viral load of <6×106 IU⁄mL, treatment with sofosbuvir-ledipasvir can be shortened to eight weeks without compromising ≥95% efficacy. The number of HCV-infected patients in Ontario eligible for shortened therapy, and the associated cost savings, are unknown. The authors propose that treating every patient with shortened therapy, regardless of baseline viral load, would lead to significant public cost savings and collateral efficiencies, enabling increased HCV treatment capacity and cure.
Source - Abstract Summary, View Full Text Article.

April 11
AP Top Health News At 3:05 p.m. EDT 
Large food recalls have forced consumers to throw away hummus and ice cream that may be contaminated with the same potentially deadly bacteria - listeria....

April 9, 2015
Public Release: 9-Apr-2015
Brown University
Study tallies huge cost of hepatitis C drugs for RI prisons
PROVIDENCE, R.I. [Brown University] -- A new study finds that effective new hepatitis C drugs are so expensive the state of Rhode Island would have to spend almost twice its entire prison health budget to treat all its chronically infected inmates. Even providing the medicine only to the very sickest inmates who will remain in custody for at least another year would exceed the state prison system's pharmacy budget more than five times over.

Born between 1945 and 1965? Ever been tested for Hepatitis C?
Were you born between 1945 and 1965? Have you ever been tested for Hepatitis C? If you answered “yes” to the first question and “no” to the second…
…there’s no better time than now to get tested for Hepatitis C.

Multiple variables, including IL28B genotype with viral load, HCV-genotype, Forns’ Index and HIV coinfection were used to construct a model that accurately predicted virological response at 4 weeks in patients with hepatitis C virus infection treated with pegylated interferon alfa-2a and ribavirin, according to study data.

Risk Factors in HIV-Infected MSM, With or Without HCV
Sexually Transmitted Infections, April 9, 2015

April 8, 2015
Genetic Variants Influence Susceptibility to HCV
BMC Infectious Diseases, April 8, 2015

After rescinding breakthrough designation earlier this year, the FDA re-established two new designations for an oral combination tablet of grazoprevir/elbasvir for the…

House Republicans are promoting a broad new bill supported by drugmakers and medical-device manufacturers that they say would make promising medications and devices available to the public faster and significantly reduce the costs associated with product development.

Gilead’s $1,000 Pill Is Hard for States to Swallow
Hepatitis C drug Sovaldi strains programs for the poor; Texas didn’t pay for it last year
The data show patient access to Sovaldi varied widely state by state, reflecting different coverage of the drug and also long-standing disparities in how states deliver health benefits to the poor. Many states limited Sovaldi’s availability to the very sickest patients, primarily those with severe liver scarring.

April 7
HCV Treatment in Liver Transplantation Recipients: My Take on the Latest HCV Guidance
Nezam H. Afdhal MD, FRCPI - 4/7/2015
In starting HCV treatment after liver transplant, how soon is soon enough?

Pricing of Drugs and Formulary Placement: Making Sense of Hepatitis C Treatment
The webinar took place on Tuesday, March 31, 2015.
View the complete program, here.

HCV Advocate
Overview — Preparing for Treatment: Part 1

The HCV Advocate newsletter is a valuable resource designed to provide the hepatitis C community with monthly updates on events, clinical research, and education. 

HCV Advocate Newsletter

Overview — Preparing for Treatment: Part 1
Alan Franciscus, Editor-in-Chief
While cure rates are much higher and side effects are much lower many people are finding that getting approved for treatment is much harder. This month’s "Patient’s First" is Part 1 of practical information about preparing for treatment. 

Hepatitis on the Hill
Lucinda K. Porter, RN
Lucinda and approximately 75 hepatitis advocates met in Washington, DC, for Hepatitis on the Hill. The event focused on increasing the federal response to the viral hepatitis epidemic in the United States. 

HealthWise: Hepatitis C: Giving a Liver, Getting a Liver
Lucinda K. Porter, RN
Years of living with chronic hepatitis C virus infection (HCV) destroyed my friend Rick’s liver. Last year, a liver transplant saved his life. A motor vehicle accident killed a 19-year-old man, and now Rick is healthy. 

Alan Franciscus, Editor-in-Chief
This month, read about BMS's NDA for Daclatasvir + Sofosbuvir to treat genotype 3, reports from CROI on the effectiveness of DAA's on HIV/HCV coinfected persons, and the benefits of early treatment and why we shouldn’t wait to treat. 

Lucinda K. Porter, RN
Read about the utility of viral load monitoring during DAA treatment, treating HCV in children, the cost effectiveness of Harvoni, and predictors of mental and physical health among people with chronic HCV. 

Alan Franciscus, Editor-in-Chief
We have updated and expanded our HCSP Fact Series on “HCV Disease Progression” and combined the fact sheets in a new and more easily accessible fact sheet calledOverview of HCV and Disease Progression. 

HCV Advocate Mid-Month Newsletter 
March 15, 2015

In This Issue:
HCV in Japan
Alan Franciscus, Editor-in-Chief
Of all the industrialized countries of the world, Japan has the highest rate of hepatitis C (HCV). It also has one of the oldest and most varied histories of hepatitis C in the world among the industrialized modern nations. 
Alan Franciscus, Editor-in-Chief
Read about fast rate of fibrosis progression after seroconversion, compassionate use of sofosbuvir for post-transplant, and transplant delisting after being cured of HCV. 
The Five: Diabetes
Alan Franciscus, Editor-in-Chief
This month’s Five is about diabetes and how it relates to people with hepatitis C and why it is important to be tested for it, how to treat it and how it may improve the chances of being approved for HCV treatment. 
COBRA Continuation Coverage and Obamacare
Jacques Chambers, CLU
COBRA Continuation Coverage has been a very helpful federal law allowing persons covered under group health to continue coverage after regular eligibility is lost. Now, the Affordable Care Act provides alternatives to COBRA coverage continuation. 

Home of the
HBV Journal Review

April 2015 Issue
Now Online!

HCV Advocate News & Pipeline Blog
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HCV Action Film puts Hep C in the spotlight


HCV Action
Welcome to the new HCV Action website, the home of the UK’s hepatitis C professional community. Browse our tailored resource libraries, view our case study map or find out more information, here.

Film: Detecting & managing hepatitis C in primary care
Published Apr 2015 by Royal College of General Practitioners & HCV Action

View - Video
This educational resource was developed in a partnership between the RCGP, HCV Action and The Hepatitis C Trust, and is primarily aimed at GPs and other primary care staff. It aims to support the viewer by increasing their knowledge about the virus, and by building confidence in diagnosing people and supporting them through treatment.

The film is structured to enable reflective learning and to support GPs in applying learning to practice and comprises of four short sections each of which is also available as a stand-alone resource.

Section 1: The impact & consequences of HCV:
Covers the prevalence of undiagnosed hepatitis C, the growing public health burden of infection and the natural history and consequences of hepatitis C infection.

Section 2: Identifying those at risk:
Looks at identifying those at risk, through assessment & screening; testing and diagnosis, supported with practice examples.

Section 3: Current & future treatments:
Reviews current standards of care, treatment options and pathways into secondary care and the key components of effective management of people with hepatitis C. It also reviews emerging treatments and explores how patients can make informed treatment choices in an evolving treatment landscape.

Section 4: Supporting people through treatment:
Examines the support needs of people living with, and being treated for hepatitis C infection, the management of side effects, the promotion of harm reduction and positive lifestyle advice and the significance of integrated care and support for patients and carers.

Begin, here...

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April Index Of Hepatitis Newsletters 



On Targets and Timelines
With growing recognition that science and discovery have forged the tools necessary to effectively diagnose, treat, and, indeed, eliminate three of the world’s most lethal infectious diseases—HIV/AIDS, tuberculosis, and hepatitis C—there is a need for greater mobilization and strengthened accountability among all stakeholders.

The first global targets for eliminating hepatitis C virus (HCV) will be set by the World Health Organization later this year. It’s about time: although HCV is preventable and curable, it kills 700,000 people annually and continues to spread among millions more. At least 185 million people worldwide have been infected with HCV, although data on the epidemic’s scope and spread are sketchy. This inadequate surveillance has made it easy to ignore hepatitis C, and difficult to secure and allocate sufficient resources to save lives.

Begin, here

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Hep is an award-winning print and online brand for people living with and affected by viral hepatitis. Offering unparalleled editorial excellence since 2010, Hep and are the go-to source for educational and social support for people living with hepatitis.

Hep C Blogs

Karen Hoyt
Hepatitis C Advocate
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Last Entry: Ethanol Alcohol Ablation for HCC (2015-04-08 06:46:19)
Then I went in for my 3 months screening and sure enough, the tumor was back. It's the same one that I had the Transcatheter Arterial Chemoembolization (TACE) for...

Kim Bossley
Hepatitis C Advocate and Co-Founder, The Bonnie Morgan Foundation
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Last Entry: Our Expectations of a Doctor (2015-04-06 19:58:01)
Is is really possible to expect a doctor to be knowledgeable about every disease, every aliment?

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Willpower, resistance, persistence and pain meds...

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I wish hepatitis C patients and their physicians could talk more openly with each other. Here are two fantasy conversations I would have, one from the patient's perspective; the other from the physician's...

Grace Campbell
A pseudonym for a person living with hepatitis C on Viekira Pak + Ribavirin
In which I start Week 2 and it becomes apparent I am no expert..

Hep Forums
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. 
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The primary goal of the Caring Ambassadors Program is to help individuals with challenging health conditions to become ambassadors for their own health. We are here to help you—that is now and always will be our singular focus.

PDF Download: March 2015 Literature Review
Monthly Pubmed Review of the most relevant research on HCV


Weekly News
Weekly news updates are currently posted on the Internet site and sent out via e-blast to provide up-to-date information on what has been covered in the news regarding hepatitis C in the previous week. Topics include all stories related to hepatitis C as well as personal stories and events.

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Welcome to the April 2015 edition of the Liver Lowdown. Click on the links below and check out our featured stories for the month!

Thousands of people are on the waiting list to receive a new liver. Many die waiting. You have the opportunity to impact a life in the most meaningful of ways. Learn about how to become an organ donor and give the ultimate gift of life.

Liver disease doesn’t just affect the person who is living with it but also the people who love them, the doctors who treat them and the researchers who are working tirelessly for cures. There are many faces of liver disease. Meet one of them, New York Times best-selling author Gretchen Rubin.

Research is integral to the work of the American Liver Foundation and is essential to finding new ways to prevent, treat and cure liver disease. Supporting early-career scientists is critical to this effort. In 2014, the American Liver Foundation provided funding to 11 early-career scientists from some of the nation’s leading academic institutions who are making the study of liver disease their life’s work. Read about grantee Dr. Davide Povero.

There is always a lot happening at the American Liver Foundation and in the world of liver disease. Find out what we've been up to!

The American Liver Foundation is making news on topics including liver wellness, disease prevention, testing and treatment.

Looking for a delicious recipe to try tonight? We have one for you! Have a recipe to share? We would love to hear from you.

ALF hosts a number of events throughout the year to support liver disease awareness. Check our events calendar and find one to participate in.

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Cured of Hep C - But still living with it

HepCBC Hepatitis C Education and Prevention Society

The hepc.bull, has been “Canada’s hepatitis C journal” since the late 1990′s and has been published nonstop since 2001. The monthly newsletter 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.

April, 2015 hepc.bull HERE.

And...Hot off the Press! Peppermint Patti's FAQs, Version 10.1!!
Download (150 page PDF) for free HERE.


· BC Pharmacare now covers - HARVONI™ & SOVALDI™ - page 1 (other provinces, bottom of page 5)

· Cured of Hep C - But still living with it - page 1

· WARNING! - Don't combine Harvoni™ (or Sovaldi™) with Heart Drug AMIODARONE - page 1

· New Hepatitis C Statistics (for the World, Canada, and B.C.) Provide us with Better Targets for Testing and Campaigns - page 4

· Prayers Answered, Petitions Signed In Manitoba! - page 3

· $500 towards your World Hepatitis Day Event- page 5

· Revolade™ for LOW PLATELETS can make Treatment Possible for GT 2,3 - page 5 |

· HepCBC Liver Warriors Team: Join us in our 5th Year Walk or Run at Victoria Marathon, Half Marathon, 5K - page 5

· Urgent Request for YOUR INPUT into our Patient Group Submission! BC Pharmacare now Considering Coverage for HOLKIRA PAK™- page 5

· Research Results for Hard-to-Treat Patients: Simeprevir+Sofosbuvir and Harvoni™+GS-9451 Presented at CROI - page 6

· Honour Roll of people cured of hepatitis C - hope your name is on it soon! - page 5

· Medication Assistance, Compensation - page 7

· Support Groups: in Canada WHERE & WHEN - page 8


View All Newsletters, Here

Stay Connected


NYC Hep C Task Force
The New York City Hepatitis C Task Force is a city-wide network of service providers and advocates concerned with hepatitis C and related issues. The groups come together to learn, share information and resources, network, and identify hepatitis C related needs in the community. Committees form to work on projects in order to meet needs identified by the community.

NYC Viral Hepatitis Monthly E-Newsletter

Hep Free NYC - April 2015 Hep Free NYC Newsletter

In the News
Cost of Hep C Treatment
Viekira Pak now preferred under NYS Medicaid Fee For Service (FFS).

Federal spending on Hepatitis C drugs soared in 2014. Capital New York. Last year, Medicare spent $286 million on 10,000 New York patients who took Sovaldi, another $76 million on Harvoni, and $74 million for Olysio.

Increasing Access to Treatment for HIV and Hepatitis via Patient Assistance Programs and Cost-Sharing Assistance Programs. NASTAD Blog.

In the golden age of the Hep C cure, discount deals tie doctors' hands. The Body Pro. Who has the power to prescribe medications?

Pricey New Hep C Drugs Still Cheaper Per Cure Than Oldest Ones. Hep Mag. CROI Abstract: Real-World Pharmaceutical Costs in the Simeprevir/Sofosbuvir Era: $164,485 per SVR4.

Addiction Prevention
Report: Better outcomes for opioid addiction lie in greater access to medication. Addiction Professional. March 4, 2015. The Legal Action Center has released a strongly worded report advocating wider use of medication-assisted treatment to combat opioid addiction.

Young People Need Honest Education about Sex and Drugs. Drug Policy Alliance. Not all teens will abstain from drug use and they need to be provided honest drug education that will keep them safe. Safety First: A Reality-Based Approach to Teens and Drugs provides parents with the tools needed to evaluate and discuss strategies for protecting their teenagers from drug abuse.

Why Heroin Overdoses Are Rising and How We Can Prevent Them. The Blog. In 2013, an average of 20 Americans died of heroin overdose every day. The death toll has been rising 40% per year since 2011. Hep C infection follows heroin epidemics.

Health Care Access
Economic Study of NY Universal Healthcare Act Released. News from Assembly Health Committee Chair Richard N. Gottfried. New York would net savings of $45 billion a year by creating a universal health plan, even after counting increased spending to cover the uninsured and eliminate co-payments, deductibles and out-of-network charges, according to an economic analysis.

Hepatitis B
Global hepatitis B epidemic treatable at cost of just $36 per patient per year. AIDSMap. Analysis of minimum target prices for production of entecavir to treat hepatitis B in high- and low-income countries. Journal of Virus Eradication, 2015.

African Immigrants At Increased Risk for Hepatitis B. Blog by Coalition against Hepatitis in People of African Origin (CHIPO).

World Health Organization | Guidelines for the Prevention, Care and Treatment of Persons with Chronic Hepatitis B Infection

and more........

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GI & Hepatology News
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. The newspaper is led by an internationally renowned board of editors.

Read breaking news stories now: visit the GI & Hepatology News website.

April Issue
April 2015 Interactive Version

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Healthy You - In The News

Three in Texas infected with Listeria from tainted ice cream: CDC
SAN ANTONIO - Three cases of Listeria linked to tainted Blue Bell ice cream have been found in Texas, U.S. health authorities said on Thursday, with the recently discovered infections related to a strain thought to be a factor in three deaths in Kansas.

ACP Internist provides news and information for internists about the practice of medicine and reports on the policies, products and activities of ACP

Current Issue - April Issue

Seeking clarity for opioid prescribing
By Charlotte Huff
Doctors continue to be frustrated by their patients' chronic pain problems, due to a lack of evidence on opioids' long-term effectiveness and strong evidence of potential harms.

Bloggers Corner - April 2015

A New Fifty-Year-Old Hepatitis C Drug
Posted by Derek
Here's something that might be alarming for the companies that have been piling into the hepatitis C space (Gilead, BMS, Merck and more). But if you're a hepatitis C patient, or the insurance company of one, it might be welcome. A new report suggests that an existing antihistamine, chlorcyclizine (CCZ), could be an effective therapy. Check out that structure - that's a first-generation antihistamine if you ever saw one (the old fuzzy-headed allergy season effect). It's been over-the-counter for dog's years; in the US it mostly seems to be sold as part of the usual combinations for allergy et al...

Lucinda K. Porter, RN
Researchers at Massachusetts General Hospital developed a technique that may grow replacement livers someday. This technique uses liver cells from rats and more or less reseeds the “sick” liver.

Posted by Nancy Burke, R.D., Danielle Karsies, M.S., R.D., and Melissa Shannon-Hagen, R.D., CSO, U-M Comprehensive Cancer Center Symptom Management and Supportive Care Program on April 8, 2015
It’s mid-day and you are trying to figure out what to have for dinner. You decide on meatloaf, but the ground sirloin is in the freezer. Since you have a few hours, you set it on the counter to thaw and proceed to the next thing on your to do list. Despite what your parents may think or what you have done for years, this is not the safest way to thaw meat...

Of Interest - Patient Activism in Scotland

The Hepatitis C Trust 
Petra Wright our Scottish officer talks about how to get your voice heard in Scotland.
Watch Video

Stay informed, until next time.

Always Tina 

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