Patient organisations in France, Italy, Portugal and Spain have joined together to create a network called SENCA to campaign for better treatment and care for patients coinfected with HIV and hepatitis C virus in southern Europe.
Rates of HIV and hepatitis C coinfection range between 30% - 70% in regions of southern Europe, and liver-related illness is now a major cause of death amongst HIV-positive individuals in the region.
HIV can speed up the progression of hepatitis C virus, and although treatment for hepatitis C is available, it only works in about a third of HIV-positive patients with long-term hepatitis C virus infection. Treatment for hepatitis C virus can involve unpleasant side-effects. It is also recognised that coinfected individuals live with increased psychological and social pressures.
Because of the variability in the care, services and support available to coinfected patients in southern Europe, a meeting of patient organisations was held in Bilbao in late 2007 leading to the creation of SENCA.
Since then the network has been working to increase access to anti-hepatitis C therapy and, when appropriate liver transplants, for HIV-positive patients. Another priority has been an engagement with investigators to help influence research agendas.
SENCA has four priorities for the rest of 2008:
- Advocacy and networking.
- Initiate a study to find out why coinfected individuals in need of a liver transplant are not having appropriate referrals.
- To promote guidelines for the treatment of hepatitis C and liver transplantation in coinfected patients and to ensure that there is harmony between such guidelines across southern Europe.
- Establish a constructive dialogue with the European Register of Liver Transplant in Coinfected People.
Guidelines for liver transplants in HIV-positive patients were issued in the UK in 2005, and British guidelines for the treatment of HIV and hepatitis C coinfection were developed in 2004. A number of studies have shown good outcomes in HIV-positive patients treated with antiretroviral therapy who have liver transplants because of hepatitis C virus or hepatitis B virus.
Further information on SENCA can be obtained from Joan Tallada.