When I got diagnosed with Multiple Sclerosis, the first question I asked was: “Is there a cure?” I was dismayed when I was told that there was not. I could not grasp the fact that I was on a rollercoaster I would never be able to get off of….. That is the thing about living with a chronic illness. It is always there! You cannot take a break from it. I had naively assumed that, now I knew what was wrong with me, I could take a pill and pick up my life from where I had left off.
Back in 2010, I immersed myself into finding out why there was not a cure. I also wondered why it took so long to bring a medicine to the market and why they were so expensive. It seemed to me that people living with MS were often being told that a major breakthrough was going to happen within the next five years. It has been ten years for me at this stage, and still no cure! I remain sanguine that this breakthrough will happen. If you want to know why I think this, it is because the alternative means giving up hope and I am not ready to do that yet.
In 2011, I took part in Phase Two of a “Multicenter, Double-blind, Randomized, Parallel-group, Monotherapy, Active-Control Study”, otherwise known as a clinical trial. You can find out more about MS research here on the MSIF site. They explain what a clinical trial is and the current global status on MS Research in a clear and unbiased manner. Taking part in the trial meant something to me. I felt that I was getting involved in research on the condition I was living with, albeit only through providing blood samples and MRIs.
When I finished up on the trial, I wanted to become even more involved. I completed the European Patients’ Academy Expert Training Course for Patients and Patient Representatives on the Medicines Research & Development Process (EUPATI). The EUPATI course is an exciting and unique opportunity offering patients and patient advocates expert-level training in medicines research and development. The Course is a mixture of independent e-learning coursework and face-to-face training events over a 14-month period.
Since completing the EUPATI course, I have had the chance to be involved in research papers on unanswered questions regarding clinical trial recruitment and retention in conjunction with the HRB-Trials Methodology Research Network. I found the other stakeholders very willing to collaborate on the topic under research. I think that patient involvement in research has moved far beyond providing samples, and studies within trials (SWATS) are one example of this. I also think that trials are much more considerate of the participant’s lifestyle. It makes sense for recruitment and retention that the minimum inconvenience and maximum involvement is provided to trial participants. For example, I always wondered why I had to travel all the way to a Dublin hospital to give a blood sample and receive my placebo / trial medication. Why couldn’t a trial nurse come to me, if it made participation less of an effort?
I said at the start of this piece that I am not ready to give up hope.
Nobody would choose to have MS. I feel that getting involved in research is making a difference and makes me feel less helpless about my situation. Nobody has more skin in the game than I do. I’m really interested in what kind of MS research you would like to see happening.