"How a Patient Fought Hepatitis C Virus and Won" By Regina Boyle Wheeler Reviewed by Farrokh Sohrabi, MD
HEP DART 2013: Frontiers in Drug Development for Viral Hepatitis
HEP DART is a scientific conference that is held biennially and draws viral hepatitis clinicians and researchers from around the globe. Due to its reputation for having a scientific program that is consistent and of the highest quality, HEP DART attracts some of the foremost thinkers in the field of viral hepatitis as well as many emerging young leaders. A generous scholarship from the Organizing Committee allowed Caring Ambassadors to send a representative to the recent conference held in December. An abundance of important clinical and preclinical research was presented at HEP DART 2013: Frontiers in Drug Development for Viral Hepatitis. These presentations were given by experts to a room full of experts, but the work being done to combat viral hepatitis has broad implications. Caring Ambassadors has attempted to translate and distill some of the many highlights of this conference into a document that will be accessible to anyone who is interested in viral hepatitis research: policymakers, caregivers, healthcare workers, and patients themselves.
December 26, 2013
Congress Acts to Save the Lives of Millions Living with Hepatitis B or Hepatitis C.
A vital weapon in the fight against chronic viral hepatitis was introduced on December 12, 2013 in the US House of Representatives. Rep. Bill Cassidy (R – Louisiana) introduced the Viral Hepatitis Testing Act of 2013, HR3723, on behalf of himself, Rep. Charlie Dent (R – Pennsylvania), and Brett Guthrie (R- Kentucky). The Viral Hepatitis Testing Act increases testing and education for viral hepatitis to healthcare providers and the general public. Roughly three quarters of individuals with viral hepatitis are unaware of their infection. Viral hepatitis is the leading cause of liver cancer, one of the most lethal and fastest growing cancers in the United States.
At least 15,000 deaths per year in the US can be attributed to chronic hepatitis B (HBV) and chronic hepatitis C (HCV). Chronic HCV is a leading cause of death in Americans living with HIV/AIDS. If enacted, the bill would help save millions of American lives from unnecessary deaths due to viral hepatitis. Chronic HBV and chronic HCV usually do not cause symptoms early in the course of the disease, but after many years of a clinically ‘silent’ phase, estimates from the US Centers for Disease Control and Prevention (CDC) indicate that more than 33 percent of infected individuals will develop cirrhosis, end-stage liver disease, or liver cancer. A majority of infected individuals do not know to take precautions to prevent the spread of their infection and can unknowingly exacerbate their own disease progression.
The champions of this bill stress that it is vital that the increased screening efforts are paired with a robust and effective linkage to care program so that all individuals who require care may receive it. Exciting new therapies are now emerging in the field of viral hepatitis that effectively treat the symptoms of most individuals with HBV and can cure the majority of individuals infected with HCV.
Lorren Sandt, Executive Director of the Caring Ambassadors Program, has spent more than a decade on the hill advocating for a viral hepatitis testing bill. “Introduction of this bill is a huge step towards eradicating the epidemics of HBV and HCV.” She encouraged everyone to contact their members of congress with a simple message, “Tell your elected officials that they should support this bill. If it passes, it will help to save millions of American lives.”
Caring Ambassadors Program is a non-profit patient advocacy organization that has been working to improve the lives of individuals with viral hepatitis since 1999.
HR3723 in PDF format
Fair Pricing Coalition Condemns Gilead Sciences on the High Price of New Hepatitis C Drug Sovaldi™, and Urges Rapid and Wide Dissemination of Support Program Details for Uninsured and Underinsured People Living with Hepatitis C Full Press Release
FDA NEWS RELEASE
The U.S. Food and Drug Administration today approved Olysio (simeprevir), a new therapy to treat chronic hepatitis C virus infection.
Full Press Release
Fair Pricing Coalition Disappointed by the High Price of New Janssen Hepatitis C Drug Olysio (simeprevir) Full Press Release
Caring Ambassadors Program
Experts Agree: We Can No Longer Ignore
the Burden of Liver Disease
The Liver Cancer Roundtable held their inaugural meeting last week in Washington, DC. The Roundtable attendees included leading academic experts in liver cancer, patient advocates, and representatives from HHS, NIH, and the CDC. Dr. Douglas LaBrecque, who co-chairs the Roundtable and has been spearheading a year-long global effort to raise awareness about liver cancer for the World Gastroenterology Organization, was encouraged by the two-day event. “This was a remarkable gathering of national and international experts,” LaBrecque stated. “The results of their passionate and enthusiastic discussions will provide the basis for a first draft of a National Action Plan for the prevention, diagnosis, care, and treatment of liver cancer.”
The full press release is available here.
Hepatitis C News
Week Ending March 2, 2014
Progress Against Hepatitis C, a Sneaky Virus
‘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.’
How a Patient Fought Hepatitis C Virus and Won
‘When Randy Dietrich learned he had contracted a hepatitis C infection, he felt shock, fear, and confusion. “I had never really heard about hepatitis C,” said Dietrich, at the time a 42-year-old rising star at Republic Financial Corporation in Denver, where he’s now the CEO.’
HCV increased risk for dying prematurely
‘Adults with hepatitis C had an increased risk for dying and for dying prematurely compared with the general population, according to findings from a study conducted in New York. They were particularly likely to die of HCV-associated conditions, such as HIV or drug use, researchers from the New York City Department of Health and Mental Hygiene reported in Clinical Infectious Diseases.’
Pharma offering new hope for hepatitis C patients
‘Bristol–Myers Squibb has gotten a lot of attention lately for its new cancer treatments. The so–called bio–pharma player has been a pioneer in immuno–oncology, recently taking steps to further expand the business. But for all of the attention paid to its cancer drug pipeline, Bristol just scored a breakthrough therapy designation from the Food and Drug Administration for a treatment that targets hepatitis C.’
HCV prevalence, cost burden continue to rise
‘The hepatitis C virus has a profound negative impact on patients’ quality of life, both in its clinical manifestations and its overall economic burden, according to recent study data. A panel of hepatologists, experienced with evidence assessment, was convened to estimate how HCV affects patient outcomes.’
NMA Experts Release Recommendations to Address Hepatitis C Among African Americans
‘With an estimated 3.2 million Americans chronically infected with the hepatitis C virus (HCV), and an estimated 75% of them unaware of their infection, the sheer magnitude of the number of persons infected calls the nation to action.’
For more Hepatitis C In The News, click here
by Benjamin Ryan
The hepatitis C pipeline: huge changes on the horizon
Hepatitis C: Prepare to meet your match. The future is almost here.
CAP-Hepatitis C Get Involved
Act Now to Impact C!
The CAP-Hepatitis C Get Involved provides tools to:
- increase public awareness of hepatitis C
- inform policy makers about current hepatitis C issues
- keep abreast of evolving issues in the hepatitis C community
Together, we can change the course of Hepatitis C.