Prevention and control of viral hepatitis : the role and impact of patient and advocacy groups in and outside Europe

The Viral Hepatitis Prevention Board and the European Liver Patients Association jointly organized a meeting (Lucca, Italy, 13-14 March 2008) to review the role and impact of patients' organizations and advocacy groups in Europe and the USA on the prevention and control of viral hepatitis. The national and international groups described a wide variety of organizational structures, means of funding, services and activities. Participants reported numerous obstacles and difficulties, ranging from limited funding, weak governmental support and the lack of a high-profile lobby to residual prejudice against people with viral hepatitis and cultural barriers. The groups' experiences formed an impressive list of strengths and achievements, including international and national campaigns, networking, building of excellent relations with the media, support from and respect of professional bodies, greater respect of patients' human rights, improved access to counselling and treatment, and influence on national and international policies. The meeting highlighted opportunities, for example, to complete programmes of immunization against hepatitis B, to convince governments of the economic value of public health interventions, and raise awareness of the value of a healthy liver.