How did you get involved with viral hepatitis?
I hold a degree in communication, advertising and marketing. At the university, one of my professors at the time was the CEO of the German Liver Help Association. He asked me if I would be able to organize something special for the EXPO in Hannover back in 2000.
My idea was quite simple: why not to invite all researchers of the different hepatitis viruses (A,B,C,D,E) to a panel in order to discuss their expectations together with patients? It was a great event and a great success. Years later I realized that this has never happened before or after.
In the same year the CEO left and the board asked me to take over the position. Between 2000 and 2013 I served as the CEO of the German Liver Help Association. Over the years most of the focus remained oriented towards HBV and HCV.
What aspects of HBV/HCV in particular?
The focus of my work is the patient and their needs. Patients need to be diagnosed in time, need good quality information, easy access to medical management and the best available medication. To cover all these points a system must be in place which guarantees structure and access. So you need to think holistically and this has led to policy work becoming more and more important for me. Someone has to advocate and explain the needs of the patients and must make proposals for how the system can be improved to become more effective.
How has the viral hepatitis field, especially HCV, been changing?
For years there was no treatment available that ensured high cure rates, was easy to manage and was suitable for a large percentage of the patient population. This has now changed. But there is still a problem with coordinated prevention, targeted screening and access to the latest medication (direct-acting antivirals or DAAs).
HCV needs to be accepted and recognized by the state as a national problem and not just as a medical problem.
As I mentioned you need to think holistically. But governments mostly think in silos. This needs to be broken up. HCV needs to be accepted and recognized by the state as a national problem and not just as a medical problem. For example: Investment into prevention can save a lot of money on medical care and treatment costs. And it is obvious that prevention is less expensive than late-stage management or treatment. With screening it is the same: once people are diagnosed it will enormously reduce the transmission risk. These are simple things decision and policy-makers have to understand.
You are instrumental in our upcoming Hep-CORE project evaluating European Liver Patients Association (ELPA) members countries’ on their adherence to good practices recommendations in addressing viral hepatitis. In your opinion, why is this type of review necessary?
This project has different aspects. On the one hand, it will help to improve health networks within the member countries. A national NGO is currently in contact with the leading academic persons through EASL and VHPB but also with NGOs in the field of injecting drug use or MSM. In addition, the national ELPA members will get support by the WHO and World Hepatitis Alliance. This leads an environment where all activists within each country can unify to speak with one common message.
On the other hand, the review opens dialogues with the national decision-makers based on the results of the Hep-CORE project. A government needs normalized concrete data of the national situation and a facet of this project is that all relevant information will be collected, condensed and provided to the policy-makers.
The last level is to show best practice. Because of the comparative aspect of the review, countries can see that neighboring countries have solved various problems in approaching viral hepatitis with similar resources or circumstances.
What areas of hepatitis B and C research do you think are being neglected?
There are several neglected fields: economic research (to calculate the burden for society but also to calculate recommendation and implementation costs), innovative, easy and inexpensive devices for the rapid diagnosis of HBV and HCV, cirrhosis treatment, and treatment of extrahepatic manifestations.
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