Best Online Resources for Hepatitis C Patients

Where to go to find useful information about hepatitis C

I am frequently asked by patients to provide them with the best online resources on hepatitis C so they can review information on their own. The world of hepatitis C online information is enormous and not all of it is helpful.  Some may actually provide some misinformation. I would generally tend to avoid sites maintained by a non-health care provider, although I do know one that provides excellent nutrition information, for example.

  What do I look for in an online resource?  First, I want to know if it is maintained and updated frequently since hepatitis C information changes rapidly.  

Second, I want to know if it is prepared by an authoritative person or group. Generally, I prefer sites that are maintained and monitored by respected organizations. Third, I want to know if the information is understandable to a lay person in simple language.  Medicine is like a foreign language and many health care providers tend to speak ‘over the heads’ of patients and lay individuals. Finally, I want to know whether the information provided is actually useful and helpful. The intricacies of the virus replication may be fascinating, but not very helpful to a patient who just may want to know what to eat.  With all this in mind, I have prepared an annotated list of online resources that I think are most useful for any patient with hepatitis C.

Many have associated twitter updates which I find helpful to remind when new information is added. 

American Liver Foundation 

The ALF has numerous chapters around the country that can offer a local resource as well as patient support groups. The main website entry page is a bit daunting if just looking for liver disease information, but one can maneuver to find downloadable information without too much difficulty.

In addition, there are frequent webinars and even interviews with patients with various liver conditions. It also offers information on available clinical trials of newer treatments if that is something you are interested in.  Overall, it is one of the best resources available.

Centers for Disease Control and Prevention (CDC)

This excellent site has information and statistics for both health care professionals and patients. The site is well laid-out and information is easy to find.  Downloadable brochures are in both English and Spanish and easy to understand. The information is predominately about testing and diagnosis, but it contains useful information on risk factors for transmission as well as special populations, including the incarcerated, injection drug use, and hepatitis in gay and bisexual persons.

U.S. Department of Veteran’s Affairs (VA) 

Even if you are not a veteran, this site has one of the best general brochures for patients with hepatitis C.  It takes you step-by-step through the disease, diagnosis, and treatment in simple terms.

A Highlights section provides current updates, as well as ​the availability of newer brochures.

The Food and Drug Administration (FDA)

The FDA offers more than just information on new drug approvals. There is a nice FAQ section with answers to many questions posed by patients with hepatitis C disease. Some of it links to the CDC site, but much of it is unique and helpful.

HCV Advocate 

The HCV Advocate site offers informative series of guides for both newly diagnosed patients and those initiating therapy.  It also contains “Fact Sheets” and is in both English and Spanish.  It has a helpful site on “Disability and Benefits” which many other sites do not include.  There is also a link to a one-page brochure on patient assistant programs and their contact information.

Hepatitis C Caring Ambassador’s Program

This site features links to a helpful book on hepatitis C, but like most books, quickly can become outdated. Caring Ambassador is also an advocacy group and this is a useful entry into this arena. I find the most useful feature is a link to a slide presentation by Dr. Bob Gish on various aspects of liver disease, not just hepatitis C.

AASLD-IDSA HCV Guidelines

Although this is aimed at medical professionals, it is clearly the best single source for up to date recommendations regarding all aspects of hepatitis C from diagnostic testing to treatment choices.  Straightforward, boxed recommendations allow one to easily find key summary concepts and choices.

HepCure the App

A new app for iPhone or iPad is now available to help patients starting therapy for HCV. This app was developed by Icahn Mt Sinai Medical School and is excellent for patients and providers.

Breaking the Silence: Voices of Hepatitis C. A Video Documentary

Finally, I would be somewhat remiss if I didn't include a YouTube video of three patient stories entitled "Breaking the Silence: Voices of Chronic Hepatitis C".  It is a feature documentary that is 17 minutes long and includes moving stories of three of my patients who have hepatitis C.

Summary

This is clearly only a superficial list and there are undoubtedly many others that are also quite helpful, including www.ihelpC.com and www.hepatitis-central.com

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