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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.”
Every 30 seconds, one individual dies from liver cancer (HCC). Globally, HCC is the second deadliest cancer in men and number 3 overall. Together with liver cirrhosis, it results in 1.75 million deaths per year. One in twelve of the world’s population is affected by chronic hepatitis B or C, which cause 80-85 percent of all the world’s HCC. 25-40 percent of those infected with viral hepatitis will die of the resulting cirrhosis or HCC. This is especially disturbing given that both hepatitis B and C are preventable and treatable. New drugs, just approved for hepatitis C, will cure close to 100 percent of patients infected with hepatitis C. A highly effective vaccine has been available to prevent hepatitis B since 1982. In the US, HCC is one of the very few cancers which has an incidence that is rising instead of falling, and it is the fastest rising cause of cancer death in the US. Yet, there is no US, much less global, policy or action plan to address HCC. The majority of countries don’t even have a policy to address hepatitis B and C. Universal birth and full 3 dose vaccination for hepatitis B should be a global priority, but 25% of the world’s children are still unvaccinated.
Given the number of individuals that HCC impacts in the US and worldwide, liver cancer has received very little attention from those organizations that are in a position to effect real change. The WHO’s Millennium Health Goals stress HIV, tuberculosis, and malaria as the critical global infections; hepatitis doesn’t even make their list of ‘neglected infections’. This inattention to viral hepatitis is alarming, given that it results in significantly more deaths than HIV, tuberculosis, or malaria. The WHO’s policies have a very real impact; the WHO itself spends 500-800 times more per death per year on HIV, tuberculosis, and malaria than they do on viral hepatitis. The US President's Emergency Plan for AIDS Relief (PEPFAR) program has spent 63 billion dollars on HIV, tuberculosis, and malaria in low resource countries over the past eight years. The Global Fund to Fight AIDS, Tuberculosis, and Malaria has allocated 22.9 billion dollars to these diseases since 2002. Other philanthropic organizations, including the Gates Foundation, have spent tens of billions more. In the US, the NIH designates over 3 billion dollars per year to HIV, but only 160 million to all of viral hepatitis. The CDC will spend 1.3 billion on HIV/AIDS this year and only 30 million on all of viral hepatitis, which represents a significant increase from the 19 million dollars that were allocated in previous years.
Lorren Sandt co-chairs the Roundtable with Dr. LaBrecque. “I have been working to put together a Roundtable on liver cancer for the better part of a decade,” said Sandt. “I am greatly encouraged by the amazing group that we had in the room and the progress that we were able to make in just a couple of days.”
“How and why the US and the world have continued to ignore this ongoing health crisis escapes and astounds me,” said LaBrecque. “It will take a massive, coordinated global effort to reverse this critical assault on world health, similar to the successful campaign mounted to reverse the onslaught of HIV/AIDS. HIV currently affects 34 million individuals globally. In contrast, hepatitis B and C chronically infect close to 600 million individuals globally. It is well past time that viral hepatitis receive the attention that it deserves in order to reduce the number of needless deaths from HBV, HCV, and liver cancer.”
For more information, please contact Lorren Sandt at 503-632-9030.
Douglas LaBrecque, MD, is an Emeritus Professor of Internal Medicine at the University of Iowa, founder and 30 year chair of their Liver Section, and Chair of the Liver Section of the World Gastroenterology Organization.
Lorren Sandt is the Executive Director of the Caring Ambassadors Program, a non-profit patient advocacy organization that has been working to improve the lives of individuals with viral hepatitis since 1999.
The Caring Ambassadors Program mission is to help improve the lives of those affected by long-term diseases through advocacy, information, and support.
People with long-term disease are empowered to make personally appropriate choices to optimize their overall wellness day-by-day. Associated suffering and death are minimized through collaborative healthcare approaches.
Patient engagement is necessary for optimum wellness.
Health is holistic.
Patient-centered care is optimal care.
Evidence-based information is necessary for good decision making.
Collaboration and integration benefits all patients.
Learn more about the Caring Ambassadors Program and the new DVD series, Hepatitis C Choices in Care on
See Page 10 for "The road to a cure." The founder of the Caring Ambassadors Hepatitis C Program, Randy Dietrich, looks back on his journey with the virus, from the day he was diagnosed to the day he was cured. Editorial by Cristina Gonzalez
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