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

Sunday, February 3, 2019

2019 February Hepatitis Newsletters: Finding Support

Valentine's Day is almost here, either you love it or hate, right? Me. Hate it. In any event, while you're waiting for either flowers, candy, diamonds or a sandwich, sit back and read this month's viral hepatitis newsletters, written by inspiring individuals that spread hope and love all year long.

Finding Support
Finding support online can be extremely useful when you're faced with decisions about HCV treatment or care. But remember folks, a support site, forum, or blog, should offer only personal experiences, and support, not medical advice. Understand any information you receive about HCV treatment, liver health or medications doesn't come from medical professionals and is not meant to replace your professional care. With that said, I highly suggest you check out the following support forums and my fav Facebook page.

Karen Hoyt's Facebook Page - Happy Valentine's Day!
Visiting Karen's Facebook page is like taking a class without leaving home. Karen covers it all, from tips on liver health, creating a well-balanced meal, to her own journey living with cirrhosis, liver cancer, and the emotional ups and downs of a lifesaving liver transplant. Visit her website and YouTube channel as well. Not done yet, if you haven't read her book, check it out, here.

Hep Forums 
Hep Forums  is a safe place to learn, share and exchange ideas. The forum provides moderated peer-support for people who have Hepatitis B, C or a co-infection. View all posts here, or start with this recent post: Started Epclusa today 2/1/2019.

Recommend Support Forums
Hep Forums
Hep C Warriors
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.
Stay Updated
Want to Stop Fatty Liver Disease? Cut Back on Sugary Drinks!
Undiagnosed Hepatitis Common Among People With Cancer
Start here...
The aim of is to develop a high-quality online resource to increase awareness of viral hepatitis, its treatment, and the needs of people living with viral hepatitis in Europe.
The Latest News & Research:
January Bulletin 
Lancet Commission recommends actions to support elimination of hepatitis C
HCV modelling study
HIV/HCV co-infection and end-stage liver disease
Survival after liver cancer diagnosis is shorter in people living with HIV
Conditional cash transfers to encourage hepatitis C diagnosis and treatment in people who inject drugs
Barriers to HCV treatment in people who inject drugs
TAF for hepatitis B
AbbVie legal challenge in UK tender exercise dismissed
Begin here...

HCV Advocate
The HCV Advocate newsletter is a valuable resource designed to provide the hepatitis C community with monthly updates on events, clinical research, and education.
What We Need to Eliminate HCV
I Heart Liver
Hepatitis Headlines

Stay Updated
What’s Up! News about the upcoming issue of our last HCV Advocate Newsletter this March, our patient HCV video and Packhealth – a patient resource.
Begin here.....

World Hepatitis Alliance
The World Hepatitis Alliance goal is to achieve a world free from viral hepatitis, World Hepatitis Alliance provides global leadership in awareness-raising, advocacy and in efforts to find the missing millions.
In The News

For Your Viewing Pleasure
Describe recent advances in HCV management
Review current barriers to HCV screening, testing, and linkage to care
Discuss effective approaches to overcoming barriers to HCV elimination
Click here to read our latest newsletter.

New York City Hepatitis 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.
Hep C Elimination in People Living with HIV
NYC Hep C Task Force Meeting. February 27 (9 AM -2 PM) @ 208 W 13th St. Support Hep C Elimination in PLWH!
All - Hep Free NYC Newsletters

Hepatitis NSW
Hepatitis NSW provides information, support, referral and advocacy for people affected by viral hepatitis in NSW. We also provide workforce development and education services both to prevent the transmission of viral hepatitis and to improve services for those affected by it.
Stay Current
News Updates

'What was your journey to becoming hep C free?'
Over 40,000 Queenslanders are living with hepatitis C. Find out what it's like for those who have lived with the virus and the journey to being cured.

Hepatitis Victoria
Hepatitis Victoria is the peak not-for-profit community organisation working across the state for people affected by or at risk of viral hepatitis.
View the Latest Newsletter, or relax and listen to a short podcasts interviewing health experts and practioners on topics related to viral hepatitis - have a listen!

The British Liver Trust 
The British Liver Trust is the leading UK liver disease charity for adults – we provide information and support; increase awareness of how liver disease can be prevented and promote early diagnosis; fund and champion research and campaign for better services.
Clare's Story
New publication: Thinking ahead - planning for your future...
Support Groups
Liver Disease Toolkit
Liver disease is one of the five most common causes of premature death in the UK and is the only major cause of death that has a year by year increasing incidence. However, more than 90% of liver disease is preventable. The three major causes of liver disease in adults are alcohol-related liver disease, obesity and metabolic syndrome leading to non-alcohol-related liver disease, and viral hepatitis.
View All Newsletters, here.

The Hepatitis C Trust 
The Hepatitis C Trust is run by patients with the goal of eliminating HCV in the United Kingdom. The Trust’s mission is to reverse the rapidly increasing death toll caused by hepatitis C in the UK until no-one dies from this preventable and treatable disease and, ultimately, it is all but eradicated in this country.
Stay Updated
Impact of hepatitis C on the liver
Hepatitis C primarily damages the liver. This can have a number of different effects.

National Viral Hepatitis Roundtable
The National Viral Hepatitis Roundtable (NVHR) is national coalition working together to eliminate hepatitis B and C in the United States.
Strategies to Eliminate HCV in Veterans
This webinar highlighted various programs to engage U.S. Veterans in hepatitis C testing and treatment services in the VA and community settings. See the slides and access the archived webinar
Click here for the slides. Click here for the recording. (Click the link, and then enter the requested information to view the webinar).
View all NVHR newsletters

HepC Challenge - Caring Ambassadors Program
The Caring Ambassadors Program uses a unique approach in our work to address the elimination of viral hepatitis and specifically hepatitis C.
Weekly Updates: Hepatitis C News
Topics include all stories related to hepatitis C as well as personal stories and events. To sign up to receive our weekly newsletter sent to your inbox, click here.

National Institutes of Health
A monthly newsletter from the National Institutes of Health, part of the U.S. Department of Health and Human Services.
February Newsletter
Understanding Emerging Diseases
Protect Yourself from Heart Attack and Stroke
Begin here..

In Case You Missed It
AASLD / EASL HCV Special Conference
February 1-2, 2019
Make sure to check out coverage from this months HCV Special Conference.

The Year Of The Liver
Dr. Joe Galati outlines his recommendations to keep your liver healthy. These tips include reducing alcohol, weight loss, avoid processed foods, regular exercise, getting more sleep, and several others

Recommended Blogs 
Karen Hoyt is devoted to offering support and accurate information to people coping with the effects of hepatitis C.

Lucinda K. Porter
Lucinda Porter is a nurse, speaker, advocate and patient devoted to increasing awareness about hepatitis C.

Hepatitis B Foundation
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide.

Hep is an award-winning print and online brand for people living with and affected by viral hepatitis.

Hepatitis NSW
Provides information, support, referral and advocacy for people affected by viral hepatitis in NSW. We also provide workforce development and education services both to prevent the transmission of viral hepatitis and to improve services for those affected by it.

Life Beyond Hepatitis C
Life Beyond Hep C is where faith, medical resources and patient support meet, helping Hep C patients and their families navigate through the entire journey of Hep C.

Canadian Liver Foundation
We strive to improve prevention and the quality of life of those living with liver disease by advocating for better screening, access to treatment, and patient care.

Hepatitis B Foundation
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide.
At we empower patients and caregivers to take control of Hepatitis C by providing a platform to learn, educate, and connect with peers and healthcare professionals.

HIV and ID Observations
An ongoing dialogue on HIV/AIDS, infectious diseases, all matters medical, and some not so medical.

ADRLF (Al D. Rodriguez Liver Foundation)
Al D. Rodriguez Liver Foundation is a non-profit organization that provides resources, education and information related to screening, the prevention of and treatment for the Hepatitis Virus and Liver Cancer.

We connect healthcare and community-based service providers with the latest science, and promote good practices for prevention and treatment programs. As Canada’s official knowledge broker for HIV and hepatitis C, you can count on us for up-to-date, accurate and unbiased information.

Kevin Pho is a practicing physician and most known for his blog KevinMD. Thousands of authors contribute to his blog: primary care doctors, surgeons, specialist physicians, nurses, medical students, policy experts. And of course, patients, who need the medical profession to hear their voices

AGA Blog
Gastroenterology and Clinical Gastroenterology and Hepatology, written by Dr. Kristine Novak.

The goal of our publications is to bring people around the world the most current health information that is authoritative, trustworthy, and accessible, drawing on the expertise of the 10,000+ faculty physicians at Harvard Medical School.

Providing physicians with virtual access to specialists can be lifesaving to liver disease patients.

The BMC series publishes 65 subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine.

Just Because Its Valentines Day

In closing may sure you check out a collection of noteworthy hepatitis C news articles in the latest issue of the Weekly Bull, published by the Canadian non-profit organization HepCBC.

Thank for stopping by!

Tuesday, October 31, 2017

Living With HCV Or Chronic Liver Disease? Updated Videos From Advocate Karen Hoyt

Sometimes it's nice to have a place to call your own, a place that feels very much like home. Karen Hoyt has created such a place some six years ago, a safe haven with a candid look at liver disease from a patients prospective, called: I Help C.

Karen shares her own journey living with cirrhosis and liver cancer, to the emotional ups and downs of her lifesaving liver transplant. If you haven't found Karen yet, she is a master at providing patient-friendly diet and lifestyle tips for liver disease patients, filling a much needed void for people living with the hepatitis C virus (HCV) and fatty liver disease.

While we have effective drugs to cure HCV, in little as twelve to eight weeks, across all six HCV genotypes, including treatment options for people with severe liver damage, such as compensated cirrhosis, not everyone - was or is - diagnosed with HCV before serious liver damage occurs. According to a study published in Clinical Infectious Diseases and presented at CROI 2015, a substantial number of baby boomers are living with advanced liver disease. In data collected between 2010-2013, researchers reported in 2013, close to half of people born during 1945-1965 had severe fibrosis or cirrhosis. In addition, in a prospective study presented at this months Liver Meeting, close to half of people with hepatitis C, who achieved SVR (cure), were found to have fatty liver disease. The article was recently published over at Medscape.

Karen's Been Busy 
A series of  new videos is now available on Karen's YouTube channel. You'll find each video informative; from haircare tips to serious topics such as ascites, hepatic encephalopathy and other liver-related complications. Not that haircare isn't a serious topic, nuff said!

To help guide you through a well-balanced diet, which is essential to help fight or curtail liver damage, Karen published: The Liver Loving Diet. The book is a labor of love, a huge undertaking for someone dealing with Hepatic Encephalopathy (HE), a serious disorder that can happen without warning if you have advanced liver disease, causing confusion, brain fatigue (brain fog) and problems with hand movements, making concentration and typing difficult. Get to know Karen better by reading an excerpt from her book: Emergency Room Diagnosis with Liver Cirrhosis.

In this uncertain world, there are few people who help others without expecting something in return. In her own modest way, with an open heart, Karen is determined to improve the lives of people struggling with liver disease, an act of kindness that does not go unnoticed.

Wednesday, October 25, 2017

HCV Support Online - Watch Stories Shared By People Affected By HCV

Video Vignettes: Through Their Own Lens: Hepatitis C Virus Liver Disease
October 24, 2017
Roughly 3 to 4 million people in the US are infected with hepatitis C virus (HCV). And 75% of them are Baby Boomers. Thirty-five to 40% of liver transplants in the US are the result of HCV cirrhosis. 

We continue our Video Vignettes series by introducing you to a member of the American Liver Foundation Support Community on Inspire who is living with a liver transplant caused by HCV. If you or a loved one has liver disease, go to and join the American Liver Foundation Support Community on Inspire.

Support Online
American Liver Foundation Support Community on Inspire.
Liver disease support group and discussion community.

View All: Video Vignettes in this series

Additional Online Support - Message Boards
Hep Forums
Hep C Warriors
Hep C Discussion Forum
Hepatitis Central
Transplant Friends

Friday, October 6, 2017

TGIF - HCV Headlines & Newsletters - Reuters Updated Article On The Cochrane Review of HCV Direct-acting Antivirals

HCV Headlines, Blog and Newsletter Updates 
Welcome to Friday! Check out today's news, along with recent journal and blog updates. Plus this months great index of October newsletters.

In The News
The Cochrane Review of HCV direct-acting antivirals is in the news again, yesterday an "updated article" from Reuters, noted the change in the authors conclusions, pointed out last month via Twitter by "Henry E. Chang."

An excerpt from the updated article; Do direct-acting antivirals curb the long-term effects of chronic HCV infection?
As reported in the Cochrane Database of Systematic Reviews, online September 18, the team stated they "could not reliably determine the effect of DAAs on the market or under development on (the) primary outcome of hepatitis C-related morbidity or all-cause mortality."
Full-text Cochrane Review with updated conclusions
Again thanks to Mr. Chang, "click here," to read the full-text Cochrane Review with updated conclusions. In addition, check out the backstory or follow the links to each rebuttal, written by HCV experts and devoted advocates.
Begin here...

Today's News
Is Birth Cohort Screening Effective for Identifying HCV Cases?
Yes; in three randomized trials, birth cohort screening was three to eight times more effective than risk-based screening...

California Works to Contain Deadly Hepatitis A Outbreaks - Medscape
"In our outbreak, 45% of the cases are illicit drug users, and nearly one in four had chronic hepatitis B or C yet had not been previously immunized," said Dr ...

Hundreds Hospitalized in San Diego as Hepatitis A Outbreak Spreads
Drug users, the homeless most affected; county has launched vaccination effort..

Denver VA nurse accused of swapping fentanyl syringes
DENVER – A former nurse at the Denver VA has been charged with stealing fentanyl. Investigators say it happened in 2016 and on several occasions Lisa Marie Jones allegedly removed fentanyl from a vial and replaced it with another substance.

How HCV Drug Makers Hit a Wall
There’s reason to believe the well for hepatitis C (HCV) treatments has dried up.

Liver Cancer Remains a Major Public Health Burden Globally
FRIDAY, Oct. 6, 2017 (HealthDay News) -- Causes of primary liver cancer differ widely among populations globally, but most cases can be prevented, according to a study published online Oct. 5 in JAMA Oncology.

Treating Hepatocellular Carcinoma: A Fight Against the Odds
Jasenka Piljac Žegarac, PhD
In an interview with Infectious Disease Advisor, Richard Burkhart, MD, assistant professor of surgery at Johns Hopkins Hospital, Baltimore, Maryland, and Amulya A. Nageswara Rao, associate professor of pediatrics and director of the Pediatric Brain Tumor Clinic at Mayo Clinic, Rochester, Minnesota, discussed the challenges associated with treating HCC.

Of Interest
October Audio and Teleconference Transcript: Obesity and Cancer

Seasonal Flu
Influenza Vaccine Good Match for Circulating Strains
Antigenic and genetic characterization of circulating influenza strains detected to date show few surprises, suggesting the 2017 to 2018 vaccine will offer good protection against this year's viruses.

Read all past and current Seasonal Flu Vaccine articles posted on this blog.

Journal Updates
Real-life results of sofosbuvir based therapy in chronic hepatitis C -naïve and -experienced patients in Egypt
In the real-life setting, Sofosbuvir based regimens for 24 weeks has established an efficacious and well tolerated treatment in naïve and experienced patients with chronic HCV genotype 4 infection; although shorter treatment durations may be possible. However, patient follow up should extent to at least 6 months post-treatment and verifying viral load on yearly basis is warranted to track any late relapse...

Incidence of DAA failure and the clinical impact of retreatment in real-life patients treated in the advanced stage of liver disease: Interim evaluations from the PITER network
Failure rate following the first DAA regimen in patients with advanced disease is similar to or lower than that reported in clinical trials, although the majority of patients were treated with suboptimal regimens. Interim findings showed that worsening of liver function after failure, in terms of Child Pugh class deterioration, was improved by successful retreatment in about one third of retreated patients within a short follow-up period; however, in some advanced liver disease patients, clinical outcomes (Child Pugh class, HCC development, liver failure and death) were independent of viral eradication...

Restrictions for reimbursement of interferon-free direct-acting antiviral drugs for HCV infection in Europe
All-oral direct-acting antiviral drugs (DAAs) for hepatitis C virus, which have response rates of 95% or more, represent a major clinical advance. However, the high list price of DAAs has led many governments to restrict their reimbursement. We reviewed the availability of, and national criteria for, interferon-free DAA reimbursement among countries in the European Union and European Economic Area, and Switzerland. Reimbursement documentation was reviewed between Nov 18, 2016, and Aug 1, 2017. Primary outcomes were fibrosis stage, drug or alcohol use, prescriber type, and HIV co-infection restrictions. Among the 35 European countries and jurisdictions included, the most commonly reimbursed DAA was ombitasvir, paritaprevir, and ritonavir, with dasabuvir, and with or without ribavirin (33 [94%] countries and jurisdictions). 16 (46%) countries and jurisdictions required patients to have fibrosis at stage F2 or higher, 29 (83%) had no listed restrictions based on drug or alcohol use, 33 (94%) required a specialist prescriber, and 34 (97%) had no additional restrictions for people co-infected with HIV and hepatitis C virus. These findings have implications for meeting WHO targets, with evidence of some countries not following the 2016 hepatitis C virus treatment guidelines by the European Association for the Study of Liver.

On Twitter
The following articles were shared on Twitter, by @HenryEChang

High sustained virological response rates using imported generic direct acting antiviral treatment for hepatitis C
This analysis assessed the efficacy of generic imported DAAs.

Treatment of HCV with 8 weeks of LDV/SOF: Highly effective in a predominately black male patient population
Reducing the duration of hepatitis C therapy may cut costs and improve adherence, but recent studies suggest that black men have lower cure rates than other patients when treatment durations are shortened. Here, we report high efficacy in a real world cohort of predominantly black male patients with hepatitis C.

Curing HCV infection: Best practices from the U.S. Department of Veterans Affairs
The widespread availability of curative oral DAA medications has made HCV epidemiologic control seem achievable. The VA is steadily approaching this goal and remains committed to diagnosing and treating all veterans with HCV infection who are willing and able to be treated.

Role of Age and Race in the Risk of HepatocellularCarcinoma in Veterans With HepatitisB Virus Infection
We conducted a retrospective cohort study using the national Veterans Administration data to identify patients with chronic HBV infection from 2001 through 2013. We examined the effect of race and age on HCC risk while adjusting for baseline clinical characteristics.

The cost of successful antiviral therapy in hepatitis C patients: a comparison of iFn-free versus iFn-based regimens at an individual patient level in Australia
We performed a retrospective chart review of 30 HCV-infected patients successfully treated with IFN-based therapy between 2013 and 2015. We also generated a model for a virtual group of 100 genotype 1 (GT1) and 100 genotype 3 (GT3) patients treated with IFN-free therapy derived from national guidelines and clinical trial data.

Blog Updates
By Rick Nash - October 5, 2017
When starting treatment, it’s an important question, how much can I work while on treatment? Of the six different treatments I’ve been on, I’ve worked part-time, full-time, some of the time, and...

The Dark Side of Stigma with Hepatitis C (Part 2) 
By Karen Hoyt - October 4, 2017
Click here to read Part 1 of The Dark Side of Stigma with Hepatitis C. Most of us have experienced stigma from having hep C. It’s easy to recognize the judgment that...

Staying Connected 
By Daryl Luster - October 3, 2017
Back in the day, when people were said to have connections it had nothing to do with the internet or the modern world of connectivity, where we are almost all involved in...

In Case You Missed It
The Physical and Emotional Toll of Hep C: Results from the Hepatitis C In America Survey

Hepatitis B Foundation
Who is Ted Slavin?
“Who is Ted Slavin? Why haven’t I heard about him before?” crept into my mind as I was reading The Immortal Life of Henrietta Lacks. Rebecca Skloot wrote a short snippet about Ted Slavin, detailing the story of a hemophiliac who sold his antibodies and aided Dr. Baruch Blumberg in the discovery of the link between the hepatitis B virus and liver cancer, which eventually led to the first hepatitis B vaccine..

Save The Date - October 12, 2017
On Thursday, Oct. 12, representatives from Hepatitis B Foundation, CDC’s Division of Viral Hepatitis, and NASTAD (the National Alliance of State and Territorial Aids Directors) will co-host a twitter chat at 2 p.m. EST using the hashtag #liverchat.

Creating a World Free of Hepatitis C
Improving Your Memory
October 5, 2017
Lucinda Porter

HEP - Blog Updates
Hepatitis C Treatment: Taking Care Physically
By Connie M. Welch        
Tips for how to take care of your health when living with hepatitis C..

HIV and ID Observations
With Several Wrong Predictions Behind Me, Here’s One I Got Right
Oct 1, 2017
Paul E. Sax, MD
However, when I wrote this summer that we might be at the end of HCV drug development, it turned out to be pretty spot-on. Since then, two companies have ended their HCV drug development programs, one in early September, then another last week. You can read more about the business reasons here, but the simple medical reason is that it would be an enormous challenge to improve on what we have now — which is good news for our patients, provided remaining access issues can be resolved...

MD Whistleblower
Does Secretary Tom Price Deserve Forgiveness?
Oct 1, 2017
Michael Kirsch, M.D.
What is the explanation for Tom Price, a physician and current Secretary of Health and Human Services, taking private charter flights costing taxpayers hundreds of thousands of dollars?

Weekly Bull
Read The Latest Issue: Weekly Bull

Hepatitis B & C Public Policy Association
October 2017 – Newsletter

HCV Advocate
October Newsletter

National Viral Hepatitis Roundtable
September/October 2017 NVHR Newsletter

The New York City Hepatitis C Task Force
Hep Free NYC Newsletters

GI & Hepatology
October Newsletter

Support Forums

Our goal is to be friendly, supportive, and most of all, informative about all aspects of transplantation. If we don't have an immediate answer to a question, we will search the Internet for information for you.

Hep Forum

Hep C Discussion Forum
Global Hepatitis C Support and Information

This message board will allow you to keep in touch with other patients, or caregivers, exchange ideas, as well as give and receive support. 

Helpful Links

Video Updates - Medscape
The Power to Protect: Vaccination Guidelines for Adults With Chronic Diseases
October 2017
CDC reviews the latest vaccine recommendations for adults, including patients with chronic medical conditions.

2017-2018 Influenza Vaccination Recommendations        
October 2017
The latest CDC influenza vaccination recommendations outline which vaccine products should--and which should not--be used to protect against flu this season.

Should You Recommend Coffee Drinking to Your Patients?
October 2017                         
(Video) Recent studies suggest that coffee drinking may be good for you, but more data replicating these studies are needed. Should you recommend coffee consumption to patients?
Free registration may be required to view videos

Happy Friday!

Tuesday, September 26, 2017

Health News & Clickbait Headlines

Health News & Clickbait Headlines
News articles about health is a hot topic for media outlets, its profitable, its a great marketing tool, and its full of clickbait headlines. The possibilities are endless, we all remember this recent headline; "Hepatitis ‘wonder drug’ may be clinically ineffective, say experts," one that may have influenced patients from seeking HCV testing or treatment, a concern shared by advocates, clinicians, scientists and health organizations alike. 

Recently, HealthNewsReview, a site dedicated to the quality of online health information, published an article written by Alan Cassels about why we find these clickable headlines so tempting, with a look at related health news clickbait trends.

Yes, a listicle: 10 times we couldn’t resist writing about health news clickbait
As a self-avowed beer snob, I would be the kind of audience that would surely be lured by the health clickbait proclaiming “Beer hops may protect against liver disease.
After all, when you find something that reinforces your questionable habits, how can you not click on it? That is the essence of clickbait–to write a headline that’s irresistible, with the goal of driving up page views and advertising money.
Read the article, here....

Recommended Links
The mission of is to improve the public dialogue about health care by helping consumers critically analyze claims about health care interventions and by promoting the principles of shared decision-making reinforced by accurate, balanced and complete information about the tradeoffs involved in health care decisions. evaluates health care journalism, advertising, marketing, public relations and other messages that may influence consumers and provides criteria that consumers can use to evaluate these messages themselves. Improving the quality and flow of health care news and information to consumers can be a significant step towards meaningful health care reform.

Behind the Headlines
Each day NHS Choices team selects health stories that are making headlines. These, along with the scientific articles behind the stories, are sent to Bazian, a leading provider of evidence-based healthcare information. Bazian's clinicians and scientists analyse the research and produce impartial evidence-based assessments, which are edited and published by NHS Choices.

MD Whistleblower
MD Whistleblower presents vignettes and commentaries on the medical profession. We peek 'behind the medical curtain' and deliver candor and controversy in every post. draws on more than 1,600 government and non-profit organizations to point you to current information. The site — a product of the Office of Disease Prevention and Health Promotion in the Department of Health and Human Services (HHS) — also offers consumer health guides, recent health news by topic, and a directory of health-related organizations.

Viral Hepatitis
Premier Hepatitis C Websites, Blogs and Support Forums

Stay aware, stay healthy.

Sunday, March 19, 2017

Sunday Update - From Your Favorite HCV Bloggers

Sunday Update - From Your Favorite HCV Bloggers

I just love spending Sunday reading all the new hepatitis C articles written by the best of the best bloggers across the web. You too?

Lets get started with Rick Nash, a young, handsome and talented writer, the blog is: C Anything But Average.

In a recent entry, Rick shared some awe-inspiring news, and valuable information, but you'll need to read it for yourself. He also needs your help, what can you do? Find out here.

Next up, "Scary Hair with Hepatitis C," Karen Hoyt the author of "The Liver Loving Diet," offers some valuable solutions for hair problems, read it over at For more words of wisdom take a look-see at Karen's blog, "Your Best Friends Guide To Hepatitis C." Karen writes from a patients' perspective about living with and treating hepatitis C, cirrhosis, liver cancer and liver failure. For the record, Karen does not have scary hair, she is perfect in every way.

Read other recent headlines, here.

What's new over at Lovely Lucinda's, statistics and sharks! Lucinda Porter points out that: "Medical error is the third leading cause of death in the U.S." Followed up with "This is scarier to me than jumping into a shark tank." Here is the article, The Real Health Risks That Threaten Us.

I simply love and admire Lucinda, she is an angel of knowledge, with a wicked sense of humor.

Over at HEP Blogs, Carleen McGuffey writes about One Time Use Syringes: "Every month we hear about a situation in a hospital, nursing home or clinic where the Hepatitis-C virus has potentially infected several people, the culprit is almost always dirty syringes."  Read the article here.

This next blog entry is a must-read, in a two part article, Connie M. Welch interviews a HCV patient about her experience with Viekira: Connie: "Is there any advice you can offer other Hep C patients or their families about treatment?" Denise: "Take it one day at a time. If you feel tired, rest as much as you can. Watch what you eat. Get ready for battle, and do your reading about Hepatitis C."
Begin here.

Finally, the staff at HEP put together "5 Fun Ways To Learn More About Hepatitis C."

If you have the time, make sure to check out the " 2017 Hepatitis C Treatment Pipeline," written by Benjamin Ryan.

To read additional blog entries at HEP, click here.

Elsewhere On The Web

End Hep C SF
Mission Statement: To support all San Franciscans living with and at risk for hepatitis C to maximize their health and wellness. We achieve this through prevention, education, testing, treatment, and linkage to reduce morbidity and mortality related to hepatitis C.

Blog: Voices
See below for voices of our End Hep C SF members reflecting on how the work they do connects to the larger vision of HCV elimination.

The Pharmacist’s Role in Hepatitis C Elimination
Written by Priyanka Patneedi on Mar 17, 2017
Hepatitis C is a chronic condition for which a cure exists, but at a cost that is so high it often creates barriers to treatment. Even with the introduction of newer and more effective medications, cost-sharing mechanisms such as plan premiums, deductibles, co-payments, and coinsurance created barriers to treatment. This has produced a large pool of patients infected with HCV who are willing but unable to access a cure.1 Removing the barrier of costs associated with Hepatitis C medications while supporting optimal treatment provision is one of the many important roles of a pharmacist.

Curing Hep C Without Walls
Written by Jessica Naugle on Mar 17, 2017
The Street Medicine component of the San Francisco Department of Public Health is a small team of providers and nurses who provide healthcare for people without homes who have trouble integrating into traditional healthcare settings. We provide drop-in clinic hours in an accommodating setting, and also provide healthcare on the streets, in parks, in SRO hotels, and in shelters. We work closely with several programs, including the Homeless Outreach Team, who work to connect the most at risk and chronically homeless to housing and other services. Our goal is to stabilize patients and transition them to traditional primary care. However, this can be a long process, so we take on most primary care goals with our patients.

Read all articles @ Blog: Voices

Helpful Links
Premier Hepatitis C Websites, Blogs and Support Forums

Full Text Articles
I highly suggest you follow Henry E. Chang on Twitter if you are interested in reading full text articles about the treatment and management of hepatitis C.

Here is todays tweet.
This review article is must-read for anyone interested in innovations & future directions in HBV HCV testing

Enjoy the rest of your day.

Sunday, March 5, 2017

Premier Hepatitis C Websites, Blogs and Support Forums

List Of Premier Hepatitis C Websites And Support

Welcome to Monday, start off your week by visiting this list of outstanding hepatitis C websites, blogs and support forums. Catch up on current HCV information, breaking news or learn about clinical studies, read personal stories from people who are living with or treating the virus. Although, remember a support site, forum, or blog, should offer only personal experiences, and support - not medical advice, any information you receive about HCV treatment, liver health or medications doesn't come from medical professionals and is not meant to replace your professional care.  

Need To Talk
A national toll-free helpline for people affected by hepatitis C. This 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.

Message Boards
Hep Forums
Hep C Warriors
Hep C Discussion Forum
Transplant Friends - Forum

Lucinda K. Porter
Life Beyond Hepatitis C | Real Hope for Life with Hepatitis C
Hep BOOMers
C Anything But Average
Hepatitis B Foundation - Blog
Dr. Joseph Galati
HIV and ID Observations

Transplant Blogs
Dan's Liver Blog
Transplant Village
Taylors Gift
Gift of Life's Second Chance Blog - Gift of Life Donor Program Blog

HCV The Dragon Slayer
HCV Advocate
Website -
HCVets - Facebook

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New fact sheets include; HCV Genotypes, Epclusa and an updated fact sheet on Viekira XR and Technivie.

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The American Association for the Study of Liver Diseases (AASLD) and the Infectious Diseases Society of America (IDSA) with the International Antiviral Society developed a living document with ever evolving guidelines to treat HCV.
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Homepage - HCV Advocate 
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NATAP - Conference coverage, full text articles.
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Treatment Action Group (TAG) - Up-to-date treatment fact sheets and more.

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Have a great week folks.


Tuesday, November 1, 2016

2016 November HCV Newsletters and Headlines

November HCV Newsletters and Headlines

Hope everyone had a great Halloween, our family sure did! Did the kids count all that candy yet? No? Did you sneak a few favorites? Yes? Consider reading this over at Al D. Rodriguez Liver Foundation; Halloween Goodies: Threat or Treat?

Candies and other sweet goodies are now commonly made with artificial sweeteners, which are more of a threat than a treat to our bodies’ health.  
How do sugar substitutes — particularly the alternative processed fructose — damage the liver? 
First, one of the problems with artificial sweeteners is that they are marketed as either healthier or safer alternatives because — as some “experts” say — “they pass through your body undigested.” In response to this train of thought, people are consuming fructose in greater, massive quantities. Yet the may be unaware that fructose, when excessively consumed, turns into a chronic, dose-dependent liver toxin.

After putting back some of that candy you swiped, check out this months index of newsletters, related articles and interesting blog updates. Enjoy!

In The News
Gilead's Q3 Bombshell: No More Hepatitis C R&D
Gilead Sciences (NASDAQ: GILD) is a Goliath in hepatitis C treatment; however, the company is shifting its research spending in the future away from hepatitis C to other indications, and that decision could have big implications on the hepatitis C market in the long term. Let's take a closer look at the hepatitis C market and Gilead Sciences' decision to press the pause button on hepatitis C R&D.

Distress and depression with type 2 diabetes tied to skipping meds
(Reuters Health) - People with type 2 diabetes who also have symptoms of distress or depression are more likely than others to miss or skip their diabetes medications, according to a recent study.

High-protein diets reduce liver fat
According to a new nutritional study conducted by the German Institute of Human Nutrition (DIfE) on individuals with type 2 diabetes, high-protein diets reduced liver fat by up to 48 percent within six weeks. It did not matter whether the diet was mainly based on plant or animal protein. ​

Acute hepatitis after heavy energy drink use 'a warning to the consumer,' liver specialist says
A construction worker who consumed an excessive amount of energy drinks developed a rare case of acute hepatitis, say doctors who want patients to know about the potential risks to the liver from such over-consumption.

Herbal and dietary supplements are known to be potentially toxic to the liver, but the association is commonly overlooked, Dr. Jennifer Nicole Harb of the University of Florida College of Medicine and her co-authors said in Tuesday's online issue of BMJ Case Reports.
Read the article, here...

Gilead sales of Hepatitis C drugs slump
Gilead Sciences Inc. on Tuesday said sales of hepatitis C drugs Harvoni and Sovaldi missed expectations and slumped in the third-quarter, as the biopharmaceutical company faces challenges from rival drugs and pricing pressures.


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

November Newsletter
HCV Advocate's November newsletter is out with a must read article about discussing treatment with your doctor. The article hit on all the important questions and answers, for example; What can you do if your doctor won’t prescribe hepatitis C treatment, or wants to prescribe an older regimen, when clearly there are newer ones available? Another wonderful HealthWise article written by Lucinda K. Porter, RN.

HCV Advocate is patient friendly, so easy to read, especially when breaking down clinical information. Alan Franciscus writes about two clinical trials; the first one is about positive health outcomes of curing people infected with chronic hepatitis C - followed by a study of low rates of relapse after being cured of chronic hepatitis C. In addition the newsletter has a drug pipeline update as well.  Finally a new Easy C fact sheet on the importance of testing for hepatitis B before initiating HCV direct-acting antiviral therapy.

Read the November newsletter, here.... and all newsletters, here... 
HCV Advocate Website, here... HCV Advocate Clinical Trials Reference Guide, here.... and HCV Medications Blog, here...

GI & Hepatology News
Over 17,000 gastroenterologists and hepatologists rely on GI & Hepatology News every month to cover the world of medicine with breaking news, on-site medical meeting coverage, and expert perspectives both in print and online. The official newspaper of the AGA Institute was launched in partnership with IMNG in January 2007.

November issue of GI & Hepatology News
Simple Interventions Markedly Improve Hepatitis Care
Fulminant HBV Reactivation Associated with HCV Drugs
NAFLD Estimated to Cost $103 Billion/Year
Download, here....
Past Issues

The Hepatitis C Coalition
The Hepatitis C Coalition is a group of leading clinicians, patient organisations, professional groups, industry and other interested parties committed to the reduction of morbidity and mortality associated with hepatitis C and its eventual elimination. The Hepatitis C Coalition has funding from AbbVie, Gilead Sciences and Merck Sharp & Dohme.

Welcome to the October 2016 edition of the Hepatitis C Coalition's quarterly newsletter. This quarterly newsletter provides a concise summary of developments in hepatitis C for policymakers, clinicians, commissioners, local government, charities and others with an interest in hepatitis C or public health. News: including the relaunch of a national partnership group to produce a locally-led framework, the publication of Public Health England's annual report on hepatitis C in the UK, the Hepatitis C Trust judicial review and NHS England’s increased treatment rate of 12,500 for 2017/18 and the update to the Commissioning for Quality and Innovation (CQUIN) scheme.

Begin, here..... 

The New York City Hepatitis 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.

Hep Free NYC Newsletter
New Data on Hep B and Hep C in NYC, Hep C Ad Campaign in Brooklyn, BOOM!Health Feature and learn more about viral hepatitis and liver cancer.

Read the newsletter, here.... news updates, here....

Treatment Action Group
Treatment Action Group (TAG) is a US-based HIV/AIDS activist organization formed in 1991 involved with worldwide efforts to increase research on treatments for HIV and for deadly co-infections that affect people with HIV, such as hepatitis C and tuberculosis.

TAGline Fall Issue
Treatment Action Group (TAG) published their TAGline fall issue with 8 must read articles including; Rallying the Multitude to Free the (generic) HCV Cure, ending the war on drugs, and access to safe and effective drugs. In case you missed it check out their fact sheet on the newly approved drug Epclusa, both in English and Spanish published in September.

Download Fall Issue here...,  Epclusa Fact Sheet, here..., All Current Publications, here....

HCV Action
HCV Action brings together hepatitis C health professionals from across the patient pathway with the pharmaceutical industry and patient representatives to share expertise and good practice.


NVHR Newsletter
The National Viral Hepatitis Roundtable is a broad coalition working to fight, and ultimately end, the hepatitis B and hepatitis C epidemics. We seek an aggressive response from policymakers, public health officials, medical and health care providers, the media, and the general public through our advocacy, education, and technical assistance.

Read about NVHR's new Policy Director, upcoming AASLD meeting, and more!

Begin, here....

The American Liver Foundation
Liver Lowdown is the monthly general interest e-newsletter of the American Liver Foundation.

In case you missed it ALF recently published their special; Liver Awareness Month 2016 Issue.

October is big for the liver community. It's Liver Awareness Month- and it's also Liver Cancer Awareness Month, so we've teamed with Bayer to help raise awareness about the risk factors for this deadly disease. Learn more about liver cancer here.

American Liver Foundation, Great Lakes Division
November 2016 Newsletter  
Published on Nov 1, 2016  
Brought to You by the American Liver Foundation, Great Lakes Division

Blog Updates

Hepatitis B Foundation
The Hepatitis B Foundation is a national nonprofit organization dedicated to finding a cure and improving the quality of life for those affected by hepatitis B worldwide. Our commitment includes funding focused research, promoting disease awareness, supporting immunization and treatment initiatives, and serving as the primary source of information for patients and their families, the medical and scientific community, and the general public.

Hepatitis B Foundation Expert Timothy Block Predicts Cure in the Next Three to Five Years
Today, the cofounder and president of the Hepatitis B Foundation, the Baruch S. Blumberg Institute and the Pennsylvania Biotechnology Center, is optimistic and predicts a cure will be developed in the three to five years.

View additional articles;
November 2016
October 2016

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 Hep Magazine are the go-to source for educational and social support for people living with hepatitis.

Worldwide, approximately 13 percent of patients with chronic hepatitis C infection have genotype 4.
By Lucinda K. Porter, RN
Treatment for Hepatitis C Genotype 4: No Longer Scary

Medicaid Insurance ACLU lawsuit Harvoni Unethical Discrimination
By Carleen McGuffey
Cures Available! Must meet Moral Minimum and Be Yellow.

By Connie M. Welch
Taking Care of Your Liver with Hep C

Read all blog updates, here....

AGA Journals BLOG
Dr. Kristine Novak is the science editor for Gastroenterology and Clinical Gastroenterology and Hepatology. She has worked as an editor at biomedical research journals and as a science writer for 15 years, covering advances in gastroenterology, hepatology, cancer, immunology, biotechnology, molecular genetics, and clinical trials. She has a PhD in cell biology and an interest in all areas of medical research.

Can Direct-acting Antivirals Treatment of HCV Reactivate Herpesvirus Infection?
Researchers report reactivation of herpesvirus in 10 patients with hepatitis C virus (HCV) infection treated with direct-acting antiviral (DAA) agents in the November issue of Clincial Gastroenterology and Hepatology. Christie Perelló et al performed a case series analysis of reactivation of herpesvirus in patients with HCV infection treated with DAA

Read more

New Online
Recent Articles

At we empower patients and caregivers to take control of Hepatitis C by providing a platform to learn, educate, and connect with peers and healthcare professionals.

By Jenelle Marie Davis - November 1, 2016
People Born Male and Living as Male The main form of transmission for hepatitis C is IV drug use. Males are statistically more likely to begin to self-medicate and to use higher...

Moment In Time
By Daryl Luster - October 31, 2016
We are familiar with the phrase “one day at a time”. The meaning for me is to not worry about tomorrow so much and focus on getting through this day, whatever challenge...

Hepatitis C and Youth
By Daryl Luster - October 29, 2016
There are different age groups who have hep c. Youth is one group that in not spoken about as much as baby boomers or others who may have been exposed decades ago....

Read other recent headlines
Connect with others, join the forum

Recommended Reading

Liver Cancer 
Risk of hepatitis B reactivation
Welcome to Weekend Reading, today we offer a short review of recent warnings issued for hepatitis C direct-acting antivirals.

Available evidence suggests that HCV treatment with the new direct-acting antivirals (DAAs) should not be limited to patients with advanced liver disease.
Evidence from 38 studies, involving 73,861 patients, showed a significant mortality benefit of achieving SVR in patients with all stages of fibrosis. Long-term studies with follow-ups of five to 12 years suggested that, particularly among non-cirrhotic patients, there was a significant decrease in mortality in SVR versus non-SVR groups.

Treatment for HCV across all genotypes
DAAs for HCV infection have all but replaced IFN as the foundation of treatment for HCV across all genotypes. Among the major advantages of these oral regimens, beyond their remarkable efficacy, has been their relatively clean safety profile.

Testing prior to treatment, during, and after HCV therapy
Directly acting antiviral (DAA) combination therapies for chronic hepatitis C virus (HCV) infection are highly effective, but treatment decisions remain complex. Laboratory testing is important to evaluate a range of viral, host, and pharmacological factors when considering HCV treatment, and patients must be monitored during and after therapy for safety and to assess the viral response. In this review, we discuss the laboratory tests relevant for the treatment of HCV infection in the era of DAA therapy, grouped according to viral and host factors.

Side effects and medical contraindications
The arrival of interferon-free direct acting antiviral (DAA) regimens for the treatment of hepatitis C virus (HCV) infection have been transformative. Treatment approaches which were once marred by frequent and potentially severe side effects, lack of patient and provider acceptance and marginal efficacy have been replaced by DAA regimens which can cure the vast majority of patients in 12 weeks with minimal to no side effects. Despite these tremendous advances in HCV therapy providers must recognize, as with any medication, that severe side effects and medical contraindications still exist for certain populations when using current DAA therapies.

Buyers’ Clubs: Generic versions of HCV drugs resulted in very high cure rates
Keith Alcorn
Use of generic versions of direct-acting antivirals resulted in very high cure rates for people who obtained the products through three buyers’ clubs, indicating that the generics products are effective, according to three presentations at the International Congress on Drug Therapy in HIV Infection in Glasgow this week.

The prevalence of recurrent viremia was low among patients with hepatitis C who achieved sustained virologic response, data from a recently published study demonstrate.

Gilead to submit regulatory applications for SOF/VEL/VOX in the United States in the fourth quarter of 2016 and shortly thereafter in Europe.
Gilead Announces SVR12 Rates From Four Phase 3 Studies of a Once-Daily, Fixed-Dose Combination of Sofosbuvir, Velpatasvir and Voxilaprevir in Treatment-Naïve and Treatment-Experienced Genotype 1-6 Chronic HCV-Infected Patients

Full Text Article

Full Text Article

Off The Cuff

November/December ACP Internist
Washington Perspective
Health policy after the election
By Robert B. Doherty
The 2016 elections on Nov. 8 will have huge consequences for health policy.

If President Clinton is elected, she would largely pursue a continuity agenda: continuing to expand coverage options under the Affordable Care Act (ACA), including offering a “public option” to compete with private plans on the marketplaces, and offering people ages 55 to 65 the option to buy into Medicare coverage. She also will propose changes to stabilize the health insurance marketplaces in each state for small group and individual insurance to address the challenges of rising premiums and insurers pulling out of some of the markets, such as increasing the premium and cost-sharing subsidies and reinvigorating an expired re-insurance program to help insurers who enroll a less healthy mix of patients. However, the proportion of her agenda that could be enacted will depend on whether Democrats take control of the Senate from the GOP, whether the House remains under Republican control, and by what margins in both cases.
If President Trump is elected, his agenda is less clear, although he has pledged to work with Congress to repeal the ACA. He could replace it by allowing the selling of insurance across state lines, making health insurance premiums in the individual market fully tax-deductible, eliminating requirements that people buy insurance, and striking mandates on the benefits that plans must offer. However, how far he could go in repealing the ACA depends on which party controls the Senate and the House. Even if the GOP were to control both chambers, it would have to gain a filibuster-proof majority in the Senate. As a practical matter, it would be politically challenging to enact legislation that would take coverage away from the 20 million people currently covered under the ACA.

Disclaimer in very small print; I did eat four peanut butter cups, and a bag of chips.

Until next time...