Cees Smit (1951), haemophilia patient, patient advocate and co-author of works such as ‘De patiënt aan de macht, baas over je eigen ziekte’ (Power to the Patient; Be the Boss Over Your Disease’, 2015).
Why is Fair Medicine a good idea?
“We need it to find less expensive medicines, because the high prices for medication threaten to disrupt the health care system. I also think that it is important that Fair Medicine can act as an organisation that is specifically focused on medicines for smaller groups of patients, for whom no good treatments or medicines are available. That group is often difficult for pharmaceutical companies to serve, or only for an unaffordably high price.”
Where do you see the most important bottlenecks in the current pharmaceutical market?
“High prices for medication is mainly due to the way that the research, approval and payment of new drugs is organised. That process is much too complex, and therefore too expensive. Something has to change, or else parties like Fair Medicine will have trouble becoming a success. Politicians have to understand that the current regulations need to be simplified. Trials could be much less expensive to arrange if we could make better use of the treatment data and bio-banks administered by patients and doctors.”
What can Fair Medicine mean for your personally, and for the patients for whom you advocate?
“For decades, patient clubs have shown that they can successfully raise funding for research. Take the Ice Bucket Challenge for the muscular disease ALS, the Alp d’HuZes to fight cancer and the Duchenne Parent Project for muscular diseases, for example. That trend is also present internationally; the French muscular disease association has set up a gene therapy factory in Paris, and there are many other examples. Fair Medicine could be an excellent tool for patient associations that want to set up a study for a new drug and want to speed up things.”