A patient’s right to try
Mirjam Bink’s story about her father and his attempt to access a new treatment for multiple system atrophy.
Interviewed by Rachel Leung
“I believe that entrepreneurship plays a key role in solving social issues. Entrepreneurs think differently when they see a problem that needs to be solved – they see the issue, see the opportunity, and roll up their sleeves to make it happen. I love the entrepreneurial spirit and have a soft spot for the ones who dare to disrupt and challenge the status quo for the better. I met Sjaak Vink (co-founder of TheSocialMedwork) at a business growth workshop, but the funny thing is, we didn’t actually talk about our respective companies, so I hadn't even heard of TheSocialMedwork!
Shortly afterwards, I was trawling the internet looking for new multiple system atrophy treatment options for my father. He’d been diagnosed three years ago, and told he didn’t have long to live. I found out about a new treatment that had originally been approved to treat leukaemia; the results were encouraging. My father had nothing to lose and everything to gain – he wanted to try it, was prepared to pay for it and was ready to sign any paperwork required saying that he’d assume all responsibility for taking the drug. His neurologist was prepared to write the prescription, but the hospital convinced him of the possible legal consequences and so he retracted it. Without a prescription, we had no way of accessing the medicine.
I continued to search for a solution, asking everyone I knew, and Sjaak’s name kept popping up! So I called Sjaak for advice. He asked his team to find names of neurologists who might not only be willing, but also were also able to prescribe the drug. By the end of it, I think that just about every single neurologist in the Netherlands knew my dad’s name. We pushed our personal networks to the max, but unfortunately to no avail. The Netherlands is still quite conservative when it comes to a patient’s rights to self-determination. Euthanasia is legal here. “Why is it that I can choose to end my life any time I want, but can’t try a pill that’s sold in every pharmacy I know of?" my father would ask.“A drug that, in the worst case scenario might kill an already dying man, but in the best case might drastically improve my situation?”
Fortunately we managed to find a German doctor who prescribed the drug for my father. It was too late to stop the disease, but my father gained so much that it was absolutely worth it. He could write again, his speech improved; he regained more mobility – especially in his neck. He could go to to the toilet; he even danced a few steps in the arms of my mum. He died peacefully in September last year with dignity, at the age of 62. I’m so glad he got to try the drug, and I hope that others who want to will have the option to trying it too. “I don’t want my surviving family to see that this medicine works, knowing that I wasn’t given the chance to try it,” he’d say to every specialist he met.
“I don’t want my surviving family to see that this medicine works, knowing that I wasn’t given the chance to try it.”
The least I can do is help TheSocialMedwork in it’s mission to ensure that patients who want to try a newly approved drug from overseas, can actually access it – with the consent of their physician – quickly and with as little hassle as possible. Every patient has the right to self-determination. Of course we have to be careful that no-one misuses or abuses a patient’s desire to live – but refusing a patient the chance to try a course of treatment when they’re well informed and are willing and able to pay for it themselves, just isn’t right.
I’m 100 % committed to TheSocialMedwork’s cause – the name says it all. It’s about social change, it’s about medicines – it’s a global network and it’s about bringing new medicines to patients regardless of where they’re located.”
Do you have a story about trying to access a new treatment that you'd like to share? We'd love to hear from you! Email us at firstname.lastname@example.org.