Last updated: 13 October 2022
My father, who was a general practitioner before he retired, was with me when we heard the official report of the neurologist. Afterwards, sitting in the car, he had to digest the fact that both his son and daughter had multiple sclerosis. I said to him, "Well, I've been told today there's lots of things I cannot do, but drinking isn't one of them." And off we went for a glass of wine... or two.
My name is Francine and I'm an independent company lawyer working in The Netherlands for brands like Red Bull. It was my brother, who lives in the US, who first told me about this new treatment called Ocrevus. I had already started emailing doctors in The Netherlands to find out if it was available when I saw Sjaak Vink on the Dutch current affairs TV show Buitenhof talking about the EMA (European Medicine Agency) delays with approving Ocrevus. I immediately reached out to everyone.org and they advised me on how I could begin the process of importing it for my personal use. At the same time I was also corresponding with Roche - the manufacturer of Ocrevus - who were very helpful and told me that the medicine had received a 'positive advice' decision from the EMA and was awaiting European Commission approval.
The most difficult part for me was not finding the medicine, but finding a doctor and hospital that would administer it. Luckily, I found a neurologist at MC Zuiderzee hospital, Dr Tans, who was going to help me. The morning of my meeting with him something amazing happened - Ocrevus was approved! This changed everything and Dr Tans and the hospital did an amazing job preparing everything rapidly. The official reimbursement for the medicine would only start from the 1st March, but I decided to move ahead in February and receive the first treatment, and as far as we know I was the first person in The Netherlands to receive an infusion of Ocrevus as an approved medication.
What would I say to other patients? You need to keep moving forward. Think what you can do, not what you can't. I'm a lawyer with my own practice and I have been restricted from doing things, but there's always a way. Also, there's a big difference in talking to equals, rather than to 'normal' people. What I mean is, it's great to talk with people who understand your limitations but remain positive and encourage you. Lastly, having a great medical team around does make a huge impact - the MC Zuiderzee in Lelystad is now a specialist centre for Ocrevus support.
My journey involved a lot of people standing up and speaking out. I was surprised that The Netherlands, that Europe, was so far behind the USA in approving this medicine. That's very sad. It's approved in Switzerland but not here. It makes you a bit ashamed. I want us to be leading the world.