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Hepatitis Education Project

Welcome to the Hepatitis Education Project

Whether you are a patient, a family member, a friend, a health care/service provider, or just someone who wants to know more about hepatitis or our organization, this site will provide you with information about the work we do and the issues facing hepatitis patients.

Hep C in the News

A lot of progress has been made during the last 12 months in the fight against hepatitis C (HCV). We've seen new recommendations that all baby boomers get tested for HCV; and two new drugs to treat HCV were approved by the FDA, with more on the way.

All these developments have caught the attention of the national media. Click on the articles below to read some of the latest news.

Hepatitis C: New Drug Treatment "is a breakthrough," BBC, April 2014

"A new treatment for hepatitis C "cured" 90% of patients with the infection in 12 weeks, scientists said..."

Drugmaker Studies Find a Bargain in $84,000 Medicine, Bloomberg, April 2014

"While the $84,000 price of Gilead Sciences Inc.’s Sovaldi has riled lawmakers and public health advocates, doctors say this new generation of hepatitis C drugs may actually help cut costs..."

Lawmakers Attack Cost of New Hep C Drug, New York Times, March 2014

"A new drug to treat hepatitis C that costs $1,000 a pill has caused rising concern among insurers and state Medicaid programs..."

Gilead Offers Egypt New Hepatitis C Drug at 99% Discount, Reuters, March 2014

"(Reuters) - Gilead Sciences, facing mounting criticism over the high price of its new hepatitis C pill Sovaldi, has offered to supply the medicine to Egypt at a 99 percent discount to the U.S. price..."

How Much Should Hepatitis C Treatment Cost?, New York Times, March 2014

"A new pill to treat hepatitis C raises difficult questions about fair pricing, not only in the United States and other affluent nations but in developing countries around the world..."

One in 100 Americans has Chronic Hepatitis C Infection, Reuters, March 2014

"(Reuters Health) - At least one percent of Americans are chronically infected with the hepatitis C virus, which over time can severely damage the liver, according to a new study..."

Progress Against Hepatitis C, A Sneaky Virus, New York Times, February 2014

"Forty years ago, a beloved neighbor was bedridden for weeks at a time with a mysterious ailment. She knew only that it involved her liver and that she must never drink alcohol, which would make things worse..."

FDA Approves Pill to Treat Hepatitis C, New York Times, December 2013

"The Food and Drug Administration on Friday approved a pill that is expected to make the treatment of hepatitis C less onerous, shorter in duration and more effective..."

Hepatitis C, a Silent Killer, Meets its Match, New York Times, November 2013

'Determined to get rid of the hepatitis C infection that was slowly destroying his liver, Arthur Rubens tried one experimental treatment after another. None worked, and most brought side effects, like fever, insomnia, depression, anemia and a rash that “felt like your skin was on fire...”'

HEP Launches National Hepatitis Corrections Network

On March 20th, HEP launched the National Hepatitis in Corrections Network.  The inaugural meeting in Chicago brought together a diverse group of professionals who work on issues related to viral hepatitis in prisons and jails.  Among the 15 attendees were correctional healthcare providers, legal and policy advocates, representatives from state agencies, and health educators.  The goal of this new initiative is to create a space for collaboration and to streamline sharing of information and resources in order to increase our ability to advocate for viral hepatitis screening and care in our nation’s correctional institutions.  

The launch meeting produced some fascinating conversations; some highlights included:

  • Identifying, as a group, numerous barriers to HCV treatment and screening for prisoners
  • Discussing best practices for HCV screening and treatment in correctional institutions, as well as for offender health education, and legal/policy advocacy
  • Generating tangible action steps we can take as a network, the first of which will be to build a clearinghouse for up-to-date information and resources to be made available online for use by agencies, advocates, incarcerated patients, and their families
  • Hearing excellent presentations from experts in their respective fields, including:

          -  Dr. Lara Strick, Infectious Disease Physician for Washington Department of Corrections
          -  Jack Beck, Attorney and Policy Advocate with The Correctional Association of New York
          -  Gabe Eber, Attorney with the ACLU National Prison Project
          -  Dr. Julie Lifshay, Health and Special Projects Manager, Centerforce

Corrections Network  - Chicago March 2013

The Network is a re-incarnation of the National Hepatitis Prison Coalition, a project of the late Phyllis Beck, a longtime advocate for incarcerated hepatitis C patients.  Based on our initial success, HEP believes the partnerships being formed via the network are a strong foundation for future collaboration that will create real change on issues related to hepatitis in corrections.  For more information, please visit www.hcvinprison.org.

New Website Launched for Hep C for Patients, Medical Providers

In December, Boehringer Ingelheim launched a website, HepCRedefined.com, to help people with hepatitis C virus (HCV) infection. Created in collaboration with HCV community advocates and health care providers, the portal offers a range of interactive resources that can be shared via social media channels, embedded on other websites or viewed on various smart devices.

video gloria rolloverMichael Ninburg, executive director of the Hepatitis Education Project, contributed to the website. "The entire HCV community is in need of simple tools and resources to talk about the disease in an informed, supportive way," Ninburg said. "There is information about HCV across the web, but HepCRedefined.com is designed to aggregate straightforward and accurate information in a single, virtual destination."

Some of the tools available on the portal include:

- a comprehensive and interactive checklist to help patients manage the care and treatment of their condition;

- a key facts page on HCV mortality;

- at-a-glance information cards designed to debunk myths surrounding HCV; and

- a community "C-pledge," where patients, health care providers and caregivers can take an oath to redefine the experience of living with HCV and the way it is perceived.

You can view the site here: www.HepCRedefined.com

CDC Tells Baby Boomers To Get Tested For Hepatitis C

babyboomersfunnel customThe CDC has released a final draft of recommendations on that all Americans born from 1945 through 1965 (“baby boomers”) get a one-time test for the hepatitis C virus. In the U.S, hepatitis C is the leading cause of liver transplants and liver cancer, and the fastest rising cause of cancer-related deaths. Persons born from 1945 through 1965 account for over 75% of adults infected with hepatitis C in the United States, and are five times more likely to be infected than other adults. Yet most do not know that they have the virus because hepatitis C can damage the liver for many years without noticeable symptoms. More than 15,000 Americans—mostly baby boomers—die each year from hepatitis C-related illness, such as cirrhosis and liver cancer, and deaths have been increasing steadily for over a decade.  Read the final recommendations here.

 

For more information vist the CDC's Know More Hepatitis website where you can also take the Hepatitis Risk Assessment.

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