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The internet can be a wonderful thing in a lot of different ways. We have access to more information than ever before, which can lead to us being more informed and more empowered. Gone are the days of having to simply take someone’s word as truth. Now we can check answers, compare opinions and make decisions to the degree we want and not because we have to always rely on someone else.
I was thinking the other day what arguments and discussions must have been like when we weren’t able to simply find the answer with our phones in seconds. So really, I was thinking what it must have been like 20 years ago when the internet was in its infancy and still clunky. I’m often in awe that in such a relatively short time we’ve come so far in how we communicate, create, share and use information.
For all the internet’s wondrous capabilities to connect us and inform us there are pitfalls. The sheer amount of information can be overwhelming. How do we know what’s true or a fact? How do we know who’s an expert or that the person we may be communicating with is even who they say they are? These are important questions to find answers to in general, especially when we talk about information related to hepatitis C transmission, screening, diagnosis and treatment.
Let’s take a more detailed look at some pros and cons of the internet’s role in accessing hepatitis C information.
Private – Unfortunately, being diagnosed with hepatitis C can come with stigma and although a health provider may give you some basic information, finding more beyond what you were given could mean having to tell someone your status and risk being judged. Disclosure is a sensitive issue for each individual and I’m not going to go into that here. What I want to stress is the benefit of anonymity the internet provides. You can search from the comfort of your own home without fear of being judged and at your own pace.
Comprehensive – Anything you want to know about hepatitis C can be found online. From transmission and screening to treatment and healthy living. If you want to know more about medication or trials, the HCV Advocate has resources for that. This large amount of information means that you never have to take someone else’s word about a particular issue.
Ease/Speed – Although not everyone has access to the internet, those who do will find that it can be easier and faster than asking someone or going to a place that’s some distance away. Often, it’s also faster because you can get any information you want on hepatitis C in a matter of minutes with a few searches.
Lack of physical connection – The downside to the privacy the internet gives us comes in a lack of physical contact. Connecting with other people who have experiences similar to ours can be invaluable in moving forward. You can find communication online in the form of chat rooms and forums. These can provide a great deal of comfort and connection, but they can’t provide the same type of connection you get by sitting in a room and talking face to face with another person who deeply understands what you’re going through.
Quantity – Such a large amount of information can be overwhelming. As an example, if you type “hep C” into Google it will find 3.98 million results. Whoa! Knowing how to sift through that information can be difficult. If you’re like me, you’ll often go to the top links on the first page, but they may not have what you’re looking for so you may continue looking. This sheer size of information can be scary but it doesn’t have to be. This is why the HCV Advocate is a great resource. Not only does it have comprehensive information on all parts of hepatitis C, but there are links to external resources where you can continue to grow and expand your knowledge.
Complexity – A big drawback to online information can be its complexity. If we are searching in the privacy of our own home, alone, and we come upon something we don’t understand partially or fully then we don’t have anyone to ask. This is a big reason why the HCV Advocate strives to have comprehensive and easy to understand information and resources. You don’t have to sacrifice breadth and depth to make information simple. It just takes a little more work. So, if you find yourself reading something (on any website) that you don’t quite understand then take down some notes and write out questions. To whatever degree you are comfortable seek out someone you trust to discuss any of the questions you have.
Verification – This is the big one. How do we know what we are reading is accurate? What if two websites have slightly different information on the same topic? These are some of the biggest questions to answer and challenges to overcome when using online information. It’s not only the amount of information but the speed at which it changes. There are lots of things about hepatitis C that we know are likely not to change, such as how it’s transmitted. Yet, there are other aspects like treatment that change very quickly and make verification even more difficult.
The above pros and cons are of course my opinion and aren’t exhaustive. These are some of the frequent ones that I myself run into. Many of you may have different experiences or different thoughts on these and others. I wholeheartedly believe in the power of the internet to facilitate change and help us bring an end to the hepatitis C epidemic. As with all tools, it’s how we use it that will be the ultimate decider.
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Matthew Zielske currently works as a HIV/HCV special populations prevention specialist at an HIV services organization. He utilizes a harm reduction model in his work with the substance use population focusing pointedly on persons who inject drugs. He is currently conducting research on Health Literacy and hepatitis C for his Master’s Thesis in Communications.
Coinfection with HIV and hepatitis C virus (HCV) is a common occurrence, with approximately 25% of HIV-infected patients in the United States being HCV-positive as well. According to the Centers for Disease Control and Prevention (CDC), HIV-HCV coinfection significantly increases patient risk for developing liver disease, often leading to liver-related death in coinfected individuals. A group based in France recently presented research they hope can lead to the eradication of HIV-HCV coinfection, potentially paving the way to rid the world of HCV in HIV-positive patients. At the 2017 Conference on Retroviruses and Opportunistic infections (CROI),
At the 2017 Conference on Retroviruses and Opportunistic infections (CROI), lead investigator, Victor Virlogeux, MD, from the Institut national de la santé et de la recherche médicale (INSERM), presented his group’s research on the eradication of HIV-HCV coinfection within the next decade. Dr. Virlogeux’s group utilized mathematical modeling to make projections on the impact direct-acting antiviral drugs (DAAs) will have on HIV-HCV infections over the next 10 years. The study utilized data, including
The study utilized data, including incidence of infection and treatment information, from the DatAIDS cohort, a collaborative effort between 15 HIV treatment centers in France. The authors examined multiple risk groups including: high-risk men who have sex with men (MSM), low-risk MSM, female and male heterosexuals, intravenous drug users (IVDU), as well as patients in additional risk categories. The researchers also examined the undiagnosed HIV-HCV coinfected population by utilizing a previously published model. Using this information, the authors examined the effect of increasing DAA coverage on HCV incidence and prevalence in the different risk groups.
Why We Need to Treat Everyone Who Has Hepatitis C
Giving Hepatitis C Treatment Priority to People Who Inject Drugs
Recently, I read a report forecasting the global prevalence of hepatitis C virus (HCV) to the year 2025. Before discussing it, I’ll start with a disclosure. I read a sample of the report, not the full report. The full report cost $3995. Yes, you read that correctly; I got a magnifying glass out to be sure I hadn’t missed a decimal point. That rate was low. The corporate rate was $11,985. Needless to say, I didn’t buy it.
Quite frankly, it crossed my mind that I was reading a swindle rather than a report, but then decided that it would be a lousy scam. Anyway, I requested a sample, making it clear that I was curious but not shopping. A polite salesperson tried to sell me the report and asked if I knew anyone who might purchase it. Do people really spend that kind of money for a single report? Yes, stock analysts do. Enough digressing, back to the report…
I read the sample, found it well written, but since the source data wasn’t included in the sample, I can’t verify the veracity of the report. Let’s assume it is factual. According to the EpiCast Report: Hepatitis C Virus – Epidemiology Forecast to 2025,1 there will be more than a million new hepatitis C infections by 2025 in 9 major countries: US, France, Germany, Italy, Spain, UK, Japan, Brazil, and China.
- And here is why I am using this report despite the fact that I can’t say with 100 percent certainty that it is true: this shouldn’t be true. Hepatitis C is curable. All the major world organizations, shareholders, some countries, and the state of New York are committed to the elimination of hepatitis C. But even if these projections are too high, what we do know is this:The World Health Organization (WHO) estimates that as many as 130 to 150 million people worldwide are living with chronic hepatitis C viral infection.
- More than one million people die of cirrhosis, mostly caused by viral hepatitis.2
- More than 500,000 people die every year from hepatocellular carcinoma (the most common form of liver cancer). It is the third leading cause of cancer deaths.
You may ask, “What about the high cost of hep C treatment? Surely we can’t treat everyone?” In my January 2017 column,3 I cite data presented at the 2016 Liver Meeting by Andrew Hill and colleagues. They showed that HCV treatment could cost under $100 per person. They analyzed production costs for generic HCV treatments from India. The cost of 12 weeks of treatment using sofosbuvir and daclatasvir can be manufactured for around $76; sofosbuvir/ledipasvir priced at $96. Velpatasvir was more expensive at $119 to $154. These prices included a 50 percent profit margin for generic suppliers.
Hepatitis C can be eliminated without forcing countries to go broke. Where do we start? We need to start with people who inject drugs. They shouldn’t be the last to be treated; they should be the first. Treatment is prevention.
A French study by Anthony Cousien and colleagues published data4 to support this in Hepatitis C Treatment as Prevention of Viral Transmission and Liver-Related Morbidity in Persons Who Inject Drugs (PWID). They looked at standard treatment in France, which treats at stage 2 fibrosis or higher for PWID, and found that would decrease HCV prevalence from nearly 43 percent to roughly 25 percent in 10 years. If the threshold for treatment was lowered to stage zero fibrosis, the projected prevalence dropped to nearly 12 percent in the same time frame. Fortify this with better testing, linkage to care, and support for treatment adherence, the prevalence could drop to 7 percent.
Imagine the impact this would have on projected rates of cirrhosis, liver cancer and liver-related death. Talk about a good investment! That $3995 report now seems like a good deal.
1EpiCast Report: Hepatitis C Virus – Epidemiology Forecast to 2025
2In the Unites States, non-alcoholic fatty liver disease (NAFLD) is moving into the number one slot for the most common liver disease. NAFLD and alcoholic liver disease are on the rise in terms of cirrhosis and cause for liver transplantation.
3Eradicating Hepatitis C by Lucinda Porter, HCV Advocate January 2017 hcvadvocate.org/news/NewsUpdates_pdf/Advocate_2017/advocate0117.pdf#Healthwise
4Cousien, A., Tran, V. C., Deuffic-Burban, S., Jauffret-Roustide, M., Dhersin, J.-S. and Yazdanpanah, Y. (2016), Hepatitis C Treatment as Prevention of Viral Transmission and Liver-Related Morbidity in Persons Who Inject Drugs. Hepatology, 63: 1090–1101.
Lucinda K. Porter, RN, is a long-time contributor to the HCV Advocate and author of “Free from Hepatitis C” and “Hepatitis C One Step at a Time.” She blogs at www.LucindaPorterRN.com and HepMag.com
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Of patients with hepatocellular carcinoma (HCC) and hepatitis C virus, about 75% can achieve virologic cure with direct-acting antiviral (DAA) drugs. In addition, more than 90% of HCC patients who have had a liver transplant can be cured of their HCV infection, according to a new study.
Treatment of HCV in patients with HCC was uncommon before the advent of DAA medications. Moreover, the real-world effectiveness of DAA use in this population has remained unclear. Researchers at the University of Washington, in Seattle, set out to study rates of sustained virologic response (SVR) for DAAs in U.S. veterans with a history of HCC (J Hepatol 2017 Mar 3. [Epub ahead of print]).
“The timing of hepatitis C virus treatment in patients with hepatocellular carcinoma is influenced by a lot of different factors—for example, the presence of cirrhosis, the status of the cancer, whether a patient is a liver transplant candidate,” said Lauren Beste, MD, of Veterans Affairs Puget Sound Health Care System and the study’s lead author. “The HCC population is one of the few groups left where there is truly uncertainty about when to offer hepatitis C treatment.”
With HCV dominating the subspecialty of hepatology for the past 25 years, some scientists believe that research should turn its attention and monetary resources to more urgent needs.
Other experts disagree with that viewpoint. “The mission for HCV eradication is far from accomplished,” Hugo R. Rosen, MD, FACP, FAASLD, head of gastroenterology and hepatology at the University of Colorado Anschutz Medical Campus in Denver, noted in the commentary.
Note: A very good read and explains why it’s so difficult to develop a vaccine. – Alan
Unlike its viral cousins hepatitis A and B, hepatitis C virus (HCV) has eluded the development of a vaccine and infected more than 170 million people worldwide. Now, researchers at Johns Hopkins Medicine report that a novel laboratory tool that lets them find virus mutations faster and more efficiently than ever before has identified a biological mechanism that appears to play a big role in helping HCV evade both the natural immune system and vaccines.
For their study, described March 8 in PLOS Pathogens, the researchers used one of the largest libraries of naturally occurring HCV to rapidly sort out which mutations allow HCV to evade immune responses and found that mutations that occur outside of the viral sites typically targeted by such antibody responses play a major role in the virus’ resistance.
“We think those mutations could account for the difficulty of making an effective vaccine,” says Justin Bailey, M.D., Ph.D., assistant professor of medicine at the Johns Hopkins University School of Medicine.
Nutrition is an important part of living well with and without hepatitis C. It is also one of the most important ingredients to help reduce the chances of developing fatty liver disease–the next liver disease epidemic. Our newly revised fact sheet provides a starting place to help people get on the right track.