Momentum is building in the fight against viral hepatitis!
HCV Quest, a new global patient survey focusing on mono-infected patients with hepatitis C (HCV) and developed by the World Hepatitis Alliance has so far received responses from 45 countries, highlighting the medical, economic and psychological burden of hepatitis C.
The survey, available in 35 languages, which looks at mono-infected patients with HCV in order to look at the effects of HCV in isolation, was designed in-part by EASL Secretary General, Professor Markus Peck, and a patient focus group.
'This data is a powerful tool for patient advocacy groups,' Professor Peck explains 'EASL, as the Home of Hepatology, and the World Hepatitis Alliance, can now highlight where improvements are needed to reduce the burden of the disease on patients and give them a strong voice in public and political conversations.'
The survey asks respondents about their experiences of diagnosis, care and treatment, and concludes by asking patients to share their thoughts in 140 characters about the challenges that they face with HCV and how they imagine life would be without it.
As Charles Gore, President of the World Hepatitis Alliance, says, 'momentum is building in the fight against viral hepatitis. Hepatitis C is a critical health issue, but it's also a life-changing social and personal issue, and it's this that patients often feel is poorly understood.'
According to a Civil Society Report commissioned by the Alliance and released on World Hepatitis Day, viral hepatitis kills more people than HIV/AIDS each year. Key public figures from both medicine and advocacy groups have called for the viral hepatitis community to learn from the remarkable success of the HIV/AIDS campaign to influence policy makers.
'Monitoring infection rates and the medical impact of the disease on individuals is one thing, but quantifying its true impact is something we achieve by talking to patients, by giving them the chance to express their thoughts,' concludes Mr. Gore. 'The survey explores patients' beliefs about how hepatitis has impacted their education, working life and lifestyle choices. This information is critical to help policy makers understand the need to tackle it.'