Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we’re always looking for ways to make sure we’re getting the most accurate, up-to-date information we can.
Clinical trials are some of the best places to look for new information. So, when GlobalData sent out this press release last year, I admit, I got excited. A comprehensive analysis of global clinical trials for cystinosis? Heck yes!
(It might be important to note that I’m a bit of a nerd).
Anyway, my interest suddenly turned to rage when I followed the link to the actual report. All of this wonderful data–69 pages worth!–could be mine for the mere price of $2,500.
What patient or caregiver just has $2,500 laying around to pay for research? We’re the ones who need access to research about the disease that affects us and our family. So why can’t we get access to it?!
It’s ridiculous! Especially when so often we know more about our disease than many of the doctors we visit. And when you have a rare disease and you’re involved in research, you become less of a patient with your doctor and more of a teammate. And that’s how it should be.
But how can we be teammates when we’re being charged for access to data that affects our lives? How is that fair? Leave your thoughts below. We’re oh so curious.