ELPA symposium in Amsterdam – ELPA – European Liver Patients Association


2013-04-08 14:38

During the International Liver Congress in Amsterdam, ELPA will hold a symposium titled “Compassionate Use in hepatitis C: Saving lives of those who cannot wait“. The event will take place during the annual EASL congress in Amsterdam on 27th April 2013 from 11.15 to 13.15.

In spite of the medical progress, many hepatitis C patients still cannot benefit from currently approved therapies. A large proportion of these patients already suffer from advanced liver disease and comorbidities such as HIV coinfection, renal or heart disease. They are at the highest risk of dying within the next years if their hepatitis C infection is not cleared very soon.

Promising new treatments are being explored in trials, which may be better tolerated and have shown to achieve between 85–100 % cure rates in selected patient groups. However, patients with advanced liver disease are usually excluded from clinical trials. Even approved medicines with good results are not authorised for seriously ill patients until several years later, or not at all. The situation of these patients may be compared with “starving to death in front of a candy shop window“: They die while they are hearing about  potentially life-saving new medicines, which will not be made available for them in time.

Compassionate use programmes for HCV patients with advanced disease are urgently needed. “Compassionate use“ means that a promising new medicine is made available to patients with lifethreatening, long-lasting or seriously disabling illnesses: This is possible even when a medicine has not yet been authorized for their condition, and entering a trial is not an option. Specific regulations and precautions need to be observed, as there may be unknown safety risks and open questions about the optimal dosage and treatment duration. As a consequence, even compassionate use programmes have exclusion criteria which mean that many seriously ill patients cannot participate in them.

Both the European Liver Patients Association (ELPA) and the European Aids Treatment Group (EATG) are currently exploring this subject together with experts and stakeholders. What are the chances and pitfalls of compassionate use in hepatitis C? How can it best be implemented to save lives, while protecting patients from complications, and doctors against legal difficulties? At our ELPA symposium, hepatologists, representatives from the European Medical Agency, the Bulgarian Deputy Minister of Health and patient advocates will share their views, experience and expertise and on compassionate use.

Please, follow the link below for an invitation to the event.