Friday, August 28, 2015

TGIF HCV Rewind: A Week In Review With A Spotlight On Don Crocock and Greg Jefferys

TGIF HCV Rewind: A Week In Review With A Spotlight On Don Crocock and Greg Jefferys

Hello everyone, we made it through another week, only a few day's until September, where does the time go?

Did you all see the article from "People" on Pamela Anderson? After living with HCV for over sixteen years she has decided to start therapy.

Its always great when hepatitis C is in the news, especially when a celebrity is involved, Anderson's announcement may reach more people over the next week than a year of "advocacy programs" designed to raise HCV awareness and testing, here is the statement.

After Living with Hepatitis C for 16 Years, Pamela Anderson Now Says 'I Could Be Cured Within a Month'
After experimenting with various alternative medicines, Anderson recently decided to try the new anti-viral medication. The Baywatch actress says, "I could be Hep C free within the month."
Lovely Pamela is not alone, close to 130-170 million people worldwide have HCV and those numbers do not include people who have no idea they are infected. The good news is that we have a cure, the bad news is the cost. Here is an article written by Lucinda K. Porter on the sad reality....

Creating a World Free of Hepatitis C
Lucinda K. Porter, RN
Hepatitis C Treatment is Worth Fighting for
Aug 20
Hepatitis C infection is curable. Unfortunately, a hepatitis C diagnosis is not an automatic qualifier for getting the medication. Many people are engaged in what seems like an endless fight for the newest hepatitis C drugs. Insurance companies were happy to approve treatment in the past, when treatments were difficult, risky, and less successful. Now that the drugs are costly, insurance companies are denying, denying, denying.....

Despite everything you hear, sometimes there is no fight at all. This is from a reader:
I am currently taking Harvoni (after having Hep C for 40 years) and here’s how I was able to get it – FOR FREE!

To learn more about FDA approved treatments for hepatitis C, start here, to read patient friendly newsletters published by our devoted HCV community, click here.

In The Spotlight

Today the spotlight shines brightly on two familiar HCV advocates, both men may not be Hollywood celebrities, but they sure are famous in my book. Don Crocock and Greg Jefferys have waged a campaign using Twitter and Facebook offering information and support to anyone battling hepatitis C.

Don Crocock
I have great admiration for Don, his years of zealous work to increase HCV awareness to me is simply outstanding. 

HCV survivor takes advocacy to social media to help other patients and spread awareness

Don Crocock: The Hepatitis C Dragon Slayer
Don Crocock was not ashamed of his hepatitis C diagnosis in September 2008. Shocked, yes. Shaken, yes. But not ashamed. For many, a diagnosis of hepatitis C virus (HCV) comes with a sense of embarrassment due to the disease’s stigma of being “dirty.” But for Crocock, the news came with a sense of empowerment and a deep desire to share information about the virus with others in order to prevent further spread of the disease.
Read more

Connect with Dan on Facebook or Twitter.

Greg Jefferys
Greg Jefferys, a blogger at "Hep Blogs" is featured in an August article published online at "ABC." The author writes about Mr. Jefferys incredible journey to India in search of an affordable generic version of Gilead's Sovaldi (Sofosbuvir), 

Hepatitis C sufferer imports life-saving drugs from India, takes on global pharmaceutical company
By Michael Atkin and Joel Keep
Mr Jefferys was so sick from hepatitis C last year that he was unable to get out of bed some days.

He dropped out of his university PhD studies and quit many of his hobbies, including kayaking and fishing.

He desperately needed a drug called Sovaldi, manufactured by US pharmaceutical giant Gilead, but could not afford it without selling his house.
Read more

Mr. Jefferys has documented his trip to India, and so much more here on his website.
Connect with Greg on Facebook.

Next up we have a few editorials, a new "learning activity," an inspiring patient video, plus a collection of great articles written by your favorite bloggers, followed by research and news.


World Journal of Hepatology
Three decades of hepatitis B control with vaccination
It is now 50 years since the discovery of the hepatitis B virus (HBV). Effective vaccines have been available since the 80s and vaccination has proved to confer lifelong protection against hepatitis B and was highly successful in reducing the disease burden. However, the occurrence of breakthrough infections, the immunological effect of natural boosting and the effectiveness of universal hepatitis B vaccination remains a challenge. The fight against HBV is not over
Clinical Liver Disease
Hepatitis C treatment: Back to the warehouse
Like many physicians that specialize in hepatitis C virus (HCV) treatment, I have spent the last few years advising many of my patients with chronic HCV infection to defer treatment and wait for new therapies. For those without advanced fibrosis or an extraintestinal manifestation of HCV, this process of “warehousing” patients for future HCV treatment made perfect sense.
Read more

HCV: The Best Cure Possible or the Best Possible Cure?
Is a regimen combining interferon (IFN) with a highly effective direct-acting antiviral agents (DAA) still an acceptable choice in 2015? The ultimate goal for society as a whole is to obtain what is best for each individual, but in doing so, it should aim not towards the best possible cure, but the best cure possible.
Read more

HCV Treatment: What Can I Do Now? What's Coming Next?
The development of direct-acting antivirals represents a significant improvement in HCV treatment. New combinations of drugs have led to improved response rates, even in patients with characteristics previously associated with having lower response rates: African American, high viral load, concomitant cirrhosis, infection with genotype 1a, and failed treatment with other anti-HCV drugs.

Expert Answers – Should people who use injection drugs be treated?
By Editorial Team
Injection drug use is the most common means of hepatitis C transmission. It’s estimated 70-90% of current and former injection drug users are infected with hepatitis C. Many in the community debate whether injection drug users should be treated.
Read more

Recent Approval Holds Promise for Genotype 3, but Hurdles Anticipated
HCV Next, August 2015
Genotype 3 accounts for 10% to 15% of patients with hepatitis C in the United States, but has been estimated to be the second most prevalent genotype…
Read more

Learning Activity

From Medscape Education Gastroenterology

Initiating Antiviral Therapy for HCV Infection in a New Era of Care: Treatment Vignette CME
A new CME was recently launched over at "Medscape" for physicians, and other healthcare professionals examining follow up care after HCV diagnosis. Although the "CME questions or post test" may not be of interest or patient friendly, a fictitious patient video vignette in the CME is worth watching for anyone considering treatment. The scenario is that of a newly diagnosed HCV patient at a two week follow up appointment.  In this "Treatment Vignette" liver heath, lifestyle changes, HCV testing of family members, adherence to treatment and follow up blood tests is examined.

Nancy Reau, MD

CME Released: 08/24/2015 

For Your Viewing Pleasure 

Hepatitis C Patient Journey: Coping With Drug Side Effects
In part four, Jim Wilson, RPh, MBA, president of WilsonRx, discusses the difficulties he faced during treatment from interferon therapy following his liver transplant.

Wilson was infected with an acute case of Non-A/Non-B hepatitis in 1975 due to a tainted blood supply but was not diagnosed with the disease until 1999. After receiving a liver transplant in 2006, he was finally cured of HCV in 2012 after enrolling in a 12-week clinical trial of the drug Harvoni.


Blogger Updates

Lucinda K. Porter, RN @ Hep blogs
Aug 24
Surprising Updates to the HCV Guidelines
The HCV Guidelines added the combination of Daklinza/Sovaldi for 12 weeks for genotype 3 patients without cirrhosis or 24 weeks with/without ribavirin for those with cirrhosis.

What I did not anticipate was that the panel would make off-label recommendations for daclatasvir. Off-label use allows physicians to prescribe approved drugs according to their clinical judgment, regardless of the indication the FDA has approved for the drug.
Read more

Greg Jefferys
Did I sound a bit angry in my last post?
That's because I was. I was angry because every day I get emails from people who are desperate to begin treatment with these new antiviral drugs and they go to their doctor and the doctor refuses to write them a prescription.
Or their specialist sneers at them and asks,
"How do you know what is in these India drugs? How do you know they are safe?"

An Unintended, but Necessary Hepatitis C Advocacy
So take the interferon treatment, with a 50% possibility of a cure and a high chance of permanent organ damage but don't use Indian generics because there is a possibility they might be sub standard (or not). Go figure that out!

Rick Nash
Aug 19
Why Harvoni and Sovaldi failed me. They are amazing new drugs with high efficacy, but they may not be best for your situation..

View all blog updates at Hep Blogs , here.

Hepatitis C Research Center Blog
HCV Drug Costs: A Treatment Access Barrier
Posted on August 27, 2015
In a newly published, thought-provoking article in the journal Clinical Infectious Diseases, Stacey B. Trooskin and colleagues discuss how the high cost of newer hepatitis C therapies has become a major treatment access barrier in the US (Trooskin SB, et al. Clin Infect Dis. 2015 Aug 12 [Epub ahead of print]). Controversial insurance coverage restrictions and treatment rationing has resulted in national patient advocacy mobilization, US Congressional inquiry, and legal challenges. Authors of this article state that the establishment of a federal program, analogous to the successful AIDS Drug Assistance Programs (ADAP), would substantially reduce access barriers and facilitate focused price negotiations between pharmaceutical companies and payers.
Read more

AGA Journals BlogAug 28
Kristine Novak
Public Health Officials Call for Wider Access to HCV Drugs
Experts from the Public Health Service and President Obama’s Advisory Council on HIV/AIDS are calling on federal and state Medicaid officials to widen access to prescription drugs that could cure tens of thousands of people with hepatitis C virus (HCV) infection. They say restrictions on the drugs imposed by many
Read more

Aug 26
Is Nonceliac Gluten Sensitivity Real?
When patients with nonceliac gluten sensitivity (NCGS) unknowingly ingested small amounts of gluten for 1 week, they developed more severe abdominal pain and bloating that patients who ingested a matched placebo, researchers report in the September issue of Clinical Gastroenterology and Hepatology. The study provides evidence for a form of

Aug 19
Can we Reduce Muscle Cramps in Patients with Cirrhosis?
L-carnitine appears to be safe and effective for reducing muscle cramps in patients with cirrhosis, researchers report in the August issue of Clinical Gastroenterology and Hepatology. Many patients with cirrhosis develop frequent muscle cramps, which reduce their quality of life. L-carnitine (L-beta-hydroxy-gamma-N-trimethyl aminobutyric acid) is an amino acid that transports
Read more

Aug 12
What Causes Different Types of Fatty Liver Disease?
Hepatic steatosis and steatohepatitis are increasing in prevalence, and can progress to histologically identical, more severe liver disease. They are associated with 3 main factors: alcohol, obesity or metabolic syndrome, and exposure to toxins. Researchers review the similarities, differences, and pathogenic mechanisms of alcohol-associated steatohepatitis (ASH), nonalcoholic steatohepatitis (NASH), and toxicant-associated fatty liver

Aug 10
Does Weight Loss Resolve Fatty Liver Disease?
Two separate studies in the August issue of Gastroenterology show that weight loss, via diet or bariatric surgery, reduce features of non-alcoholic steatohepatitis (NASH). Eduardo Vilar-Gomez et al associated extent of weight loss, produced by lifestyle changes, with level of improvement in histologic features of NASH. The highest rates of NASH reduction
Read more

Aug 20
When to Start HCV Treatment: The Intersection of Guidelines and Real-World Practice
By Kelly Eagen, MD
Treatment for hepatitis C virus (HCV) infection is changing at a pace almost too rapid for the average physician to keep up with. Until recently, HCV treatment required weekly interferon injections plus oral ribavirin for up to a year and
Read more

HIV and ID Observations
Aug 23
Post-Exposure Prophylaxis for HCV Can’t Be Cost-Effective — But We Might End Up Recommending It Anyway
An email query from a colleague:
Hi Paul,
Just got a call from one of our surgeons who got a needlestick from a suture needle, small amount of blood. Patient is HCV +. Any post-exposure prophylaxis recommended?
Read more


Interferon-free regimens overcome the effects of portal hypertension on virological responses in Hep C
Aug 28
September's publication of the Alimentary Pharmacology & Therapeutics investigated the effects of portal pressure on virological responses in hepatitis C patients treated with interferon-free regimens.
Read more

Resistance-Associated Gene Variants Found In Hep C Patients Who Received First-Generation DAAs
First-generation triple therapies for hepatitis C virus (HCV) infection are being phased out in favor of next-generation interferon-free direct-acting antiviral agents (DAAs).
Read more..

Mechanisms of Non-response to Hepatitis C Therapy
Liver International, August 28, 2015
Since the introduction of interferon-based therapy for hepatitis C virus (HCV) infection, predictors of response have been carefully evaluated to determine which patients are more likely to respond and why. While many of these factors were identified and explained, the presence of cirrhosis remains one of the well established yet least understood conditions that complicate HCV therapy.[1] In this review, we aim to shed light on the various and likely multifactorial mechanisms responsible for impaired responses in patients with cirrhosis.
Read more

Fatty Liver and Diabetes Increase Liver Fibrosis Risk
The combination of diabetes and nonalcoholic fatty liver disease increase the risk for liver fibrosis more than fivefold, according to a large prospective cohort study published online July 14 in Hepatology.

"These findings underline the significant role of these — potentially modifiable — risk factors in liver fibrosis and stress the importance of early targeting insulin resistance and/or [diabetes mellitus]," write Edith M. Koehler, MD, from the Erasmus MC University Hospital Department of Gastroenterology and Hepatology in Rotterdam, the Netherlands, and associates. "[They also] suggest that [nonalcoholic fatty liver disease] may be an important determinant of clinically relevant fibrosis in a population that has a very low prevalence of viral hepatitis."
Read more

Interferon-free regimens for the treatment of hepatitis C virus in liver transplant candidates or recipients
Treatment against hepatitis C virus has dramatically improved with the novel direct-acting antivirals (DAAs). The currently available DAAs are sofosbuvir, simeprevir, daclatasvir, ledipasvir/sofosbuvir, paritaprevir/ombitasvir and dasabuvir. IFN-free combinations of these novel DAAs with or without ribavirin give excellent sustained virological response in patients with decompensated cirrhosis awaiting liver transplantation and those with recurrence of hepatitis C post liver transplantation. More data regarding the safety and efficacy of these new DAAs are needed, but ongoing clinical trials and real life data will clarify better these issues.
Read more

Prevalence of Insomnia and Sleep Patterns among Liver Cirrhosis Patients
Few studies are available regarding the prevalence of sleep disturbance in cirrhotic patients without overt hepatic encephalopathy. This study aimed to assess the prevalence of insomnia in stable liver cirrhosis patients who are attending the outpatient clinics at King Abdulaziz Medical City, Riyadh (KAMC-KFNGH).

Hepatitis C in the UK 2015 report

Hot Topic

One in Four Hepatitis C Patients Denied Initial Approval for Drug Treatment
New Haven, Conn. -- Nearly one in four patients with chronic hepatitis C (HCV) are denied initial approval for a drug therapy that treats the most common strain of the infection, according to a Yale School of Medicine study. The finding, published Aug. 27 in PLOS ONE, identifies a new barrier to caring for patients with this severe condition.

A Look At This Week's Headlines

Hepatitis C: Meet the Meds
By Roger Pebody
August 28, 2015
Hepatitis C treatment used to have a terrible reputation. Until very recently, it consisted of weekly injections with pegylated interferon and daily tablets of ribavirin.

Not everyone did badly, but a significant number of people had debilitating side effects from the injections, including fever, tiredness and depression. Treatment usually lasted six months to one year. Worse, it didn't get rid of hepatitis C in everyone.

The new generation of hepatitis C treatments are different. You only need to take pills, and often just for 12 weeks (three months).

Oysters harbor, transmit human norovirus: Avoid raw ones
American Society for Microbiology
Washington DC - August 28, 2015 - Oysters not only transmit human norovirus; they also serve as a major reservoir for these pathogens, according to research published August 28 in Applied and Environmental Microbiology, a journal of the American Society for Microbiology. "More than 80 percent of human norovirus genotypes were detected in oyster samples or oyster-related outbreaks," said corresponding author Yongjie Wang, PhD.

FDA warns of severe joint pain risk with DPP-4 diabetes drugs
- A class of diabetes drugs that include Merck & Co Inc's Januvia have been linked with severe joint pain, the U.S. Food and Drug Administration said on Friday.

Harvoni Sees Near-Perfect Cure Rate for Hep C Genotype 4
Gilead Sciences’ Harvoni (ledipasvir/sofosbuvir) cured almost all people with genotype 4 of hepatitis C in a small trial.

Health ministry approves new hepatitis C drug under insurance scheme
A health ministry panel has added a new highly effective, but expensive, hepatitis C virus drug to the national health insurance scheme, giving high hopes for patients who have had to endure painful interferon injections. 

Wider Reach Is Sought for Costly New Hepatitis C Treatments
WASHINGTON — Federal and state Medicaid officials should widen access to prescription drugs that could cure tens of thousands of people with hepatitis C, including medications that can cost up to $1,000 a pill, health care experts have told the White House.

Hepatitis C - Liver Damage Significantly Underestimated and Underreported
The number of hepatitis C patients suffering from advanced liver damage may be grossly underestimated and underdiagnosed, according to a study led by researchers at Henry Ford Health System and the U.S. Centers for Disease Control and Prevention.

Of Interest

August 2015
Summary report: Hepatitis C Good Practice Roadshow, London
This report provides a summary of the good practice hepatitis C roadshow held by HCV Action and Public Health England on 26th June 2015. The roadshow was aimed at sharing good practice around hepatitis C and instigating local action to address the virus. The report includes summaries of the talks and workshops held on the day, as well as suggested next steps to be taken in order to tackle hepatitis C more effectively in the capital. 

August 2015
Developed by the Hepatitis C Coaltiion on the basis of interviews with patient and clinical experts, as well as drawing upon the expertise within the Hepatitis C Coalition’s membership, this fact-sheet provides an overview of the linkages between hepatitis C and alcohol-related liver disease. As well as detailing the interactions between the two conditions, it also details the health impact, as well as the latest relevant policy developments.

View Complete List Of August Reports @ HCV Action.

Enjoy the upcoming weekend.

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