Patient Story | 20 May 2019
Written by Ryan Loehr
You are a parent to a son or daughter who are suffering severe epileptic seizures every 15–20 seconds — sometimes for hours on end, every day. For those wondering what that means, or what it looks like — imagine watching on as your child’s brain is being electrocuted right in front of your eyes. The worst part? You have exhausted all available treatment options. The neurologist and other specialist have told you to enjoy your time with your child because they don’t anticipate them living much longer than the next 5-years and there is nothing else they can do about it…
This is the sad reality for a number of people living with epilepsy in Australia and globally. It get’s worse…in cases like these, imagine being the parent that finds a treatment that works — it’s saving the life of your son or your daughter but it’s not a prescribed medicine. It’s not commercially available, in fact it’s illegal. You know the medicine is supported by extensive — and ongoing research, but until the drug company completes the necessary stages of clinical validation it’s unavailable — and perhaps that’s too late. One of, if not the most important of those stages is the need to completed clinical trials.
Here sits the problem — there is a disconnect between available clinical trials and the people and families that want to access them. Having the ability to find these trials, know where to look, have the skillset to interpret and understand it’s relevance to you or your family is seemingly impossible for the average person. Even for your local GP — they have already had to learn such an extensive amount of knowledge to advise on what they do and there are limits to what one adviser can know about every single patient they see. It’s not surprising that available clinical trials can be one of those limitations — where most of us wouldn’t even know where to begin.
My interest in HealthMatch grew from my personal experience with Epilepsy. I have had the condition my entire life and kept it well controlled. Yet, when I had my last seizure, I was on the beach, had just left the water a few minutes earlier…things could have been very different for me. When I reflect on this, all I can think about is gratitude. How lucky I was and continue to be, when there are thousands of others who have much less seizure control than I do. I wanted to help others with the condition in any way I could. Reading and hearing about their stories (like the one this post started with), demonstrated that existing medication and treatment options didn’t work for everybody. There needed to be more alternatives when existing options failed. Clinical trials are not new — but they way they have been accessed were cumbersome and difficult. I don’t imagine this to be exclusive to those with Epilepsy — but much wider reaching across a variety of different conditions.
For legitimate reasons, innovation, R&D and commercialisation of a new drug takes a lot of time. That time is largely consumed by testing — which is understandable as we all want and expect treatment to be fit for their use and safe when used as directed. If we want new treatment options to be made available sooner — recruits for clinical trials need to happen faster. To do that, people need to understand how to find trials, what they involve, what the risks are and whether they are suitable. People aren’t being told what to do — they’re being empowering with the information they need to make informed decisions where other options have failed. If platforms can give people greater education, greater access to and control over new treatment options to benefit their health — it could be a solution many families need.