Carla Hollak (1962) is Professor of Internal Medicine with expertise in genetic metabolic diseases at the University of Amsterdam. She heads SPHINX, the expertise centre for lysosomal storage diseases, and has set up a service for adult patients with genetic metabolic diseases.

Why is Fair Medicine a good idea?
“The great thing about Fair Medicine is that from the very beginning, everyone is involved in the process: the patient, the doctor, the hospital, the researcher and the pharmaceutical company. It is important to clearly delineate the problem that a potential new medication needs to solve and what exactly is needed in a trial design to make it clinically relevant. From a societal perspective, it is also a necessary to ensure transparency about the price. The current system lacks such transparency. Some medications for rare genetic disorders are extremely costly, with little or no justification why the price is so high.”

Where do you see the most important bottlenecks in the current pharmaceutical market?
“I believe that the input of doctors with clinical experience in the treatment of the disease is not sufficiently utilised when it comes to development of pharmaceuticals. Independent physicians should be involved in the process more often, and at an earlier phase. At the moment, doctors are generally asked to act as paid consultants for pharmaceutical companies. In my opinion, open interactions between all parties, while doctors do not benefit financially from the partnership, is crucial. There is also a lack of coordination between evaluations of effectiveness of new medicines at the national and European levels. Lack of information about the effectiveness of the drug can sometimes result in promising medications not being approved, with the patients suffering the consequences.”

What can Fair Medicine mean for your personally, and for the patients for whom you advocate?
“I hope that we can achieve faster access to new, safe and effective medicines, for a price that is acceptable for society. If we all work together in a simple and open manner, I expect that we will not only learn how to use medication more effectively, but also how to bring it to the patient more quickly.”