The bottom line is that if persons with Parkinson’s Disease, and those without, are to become involved in the clinical trial process, whether in drug development or finding new therapies, education is key to getting anything done. What is keeping people from volunteering in clinical trials? One reason that I found early on (several years ago) was the cost of participating in trials. Sister Mary Daniels suggested I contact the Parkinson’s Disease Clinic in Bethesda, Maryland, and ask about any clinical trials I would qualify for at that time. I called, was scheduled an appointment, and was told that flight arrangements, hotel accomodations, and ground transportation information would be forwarded to me. I was then told that the funding for getting me to NIH was part of the federal budget, therefore this was part of my taxpayer money at work. Then to top it off, I was thanked for allowing them to research this disease that had moved in and wasn’t going anywhere anythime soon. I followed up on my arrangements, had a most positive experience at the National Institutes of Health in Bethesda, Maryland, and came home wanting others to experience what I had just gone through. I shared with as many people as possible about NIH funded trials, not realizing that extramural funded trials, that comprise the majority of trials across the country, don’t include the same funding to cover costs associated with participating in clinical trials in Bethesda. The common response to my suggestion about volunteering was, “I’d like to help out but I can’t afford to get to where I’m needed”. I contacted Dr. Landis at NIH, along with a copy to the Parkinson’s Disease Foundation, sharing the issue at hand. Dr. Landis agreed that this issue of intramural funding (to cover costs) vs. extramural funding (which allowed for costs to be requested in the grant budget, but seldom included) was one that needed to be looked at closer. In the meantime, while visiting with a trial coordinator, it was suggested that data was needed to show how this discrepancy in funding was affecting clinical trial participation, and suggest ways to improve this policy. Through stops and starts, working groups, researching information from various sources, it was decided that a preliminary survey be sent out to research advocates of the Parkinson’s Disease Foundation, whose history of involvement in clinical trials would give us some much needed information. The initial results showed that travel costs were an issue in participation. Eventually, a poster was presented at the World Parkinson Congress in Montreal in 2013 describing the results. I will say that collaborative efforts such as these with national Parkinson’s organizations are possible, but prioritization of these types of efforts need to be adjusted in order to give us the best possible chance at educating not only the patient community, but also the research community, as to what issues impact patient participation in clinical trials. Sometimes it takes several years to get priorities aligned, but I won’t decline the help provided.
That was just the beginning. Our involvement as advocates with Parkinson’s Movement on a global scale has given us a greater resolve to create change that will get us closer to the elusive cure. Education is key. Education on a grand scale that begins with one person, then another, then another, …. After much discussion through the last several months, as a patient-led organization, we are finding that costs associated with clinical trial participation only touch the surface. Other issues of similar importance have shown us that the patient needs to be listened to, given a chance to have a positive experience in volunteering, and watched as they become “built in recruiters” for clinical trials. I’ve often said that national organizations can only do so much before we have to take the lead as a patient community and move us to the next level. Collaborative efforts need to continue, focusing on where organizations have found themselves to be most effective. More importantly, collaborative efforts need to improve, quality-wise, among the patient community in educating ourselves about clinical trial involvement. Only as a result of making informed decisions, while having the best possible information available, will we see the extreme importance that our involvement has on clinical research.