A discussion that fellow advocate Steve DeWitte and I have on occasion is about the work that we’re doing and whether or not what we have engaged in makes a difference in the whole scheme of things. We have come to the conclusion that we will agree to disagree because each of us has a unique focus in our own right that fits in with the overarching goal of new or better treatments and therapies, and finding the elusive cure for Parkinson’s Disease.
Steve’s comment several years ago resonates with me constantly because it gives a clear indication that we all can play a part in advancing research by promoting clinical trial participation and also seeking the financial support necessary to fund these same clinical trials, along with basic and translational research. He mentioned that what he does with his Clinical Trials Transportation Program is getting people to clinical trials a few at a time, and he went on to say that what I’ve been working on with advocating for change in the federal policy that limits or cuts out totally, funding for trial related personal expenses, has lots of zeroes attached and will impact the clinical trial volunteer community in the thousands. Our agreement to disagree lies in the fact that I tell Steve that what he is doing is helping fill trials now and making a difference in how research is being conducted. My background work to change federal policy will take time, but some may have noticed that our group at Parkinson’s Movement is not one to shy away from a challenge.
My recent involvement with the Congressionally Directed Medical Research Program for Parkinson’s Disease (NET-PR) as a patient-advocate on the Integration Panel has given me a new perspective on the amount of funding that is needed to accomplish high-quality research that will yield results. The time commitment from the research community to even complete the application process is huge, and that in itself does not guarantee that the proposed research will make the final cut. The most recent numbers I’ve seen are that approximately 12 out of every 100 applications that are submitted for NIH-funded research are granted funds. This is not even close to giving some top-notch researchers a fighting chance to have an impact in the lives of all of us living with Parkinson’s Disease. Along these same lines of funding research, the Michael J. Fox Foundation for Parkinson’s Research is to be commended for their focus on getting the funding to go further so that any results that can be shared with other researchers and even pharmaceutical companies may provide an impetus for further research. The Cure Parkinson’s Trust in England and their Linked Clinical Trials program that focuses on prioritizing drugs that have gone through the regulatory process and that could have disease-modifying effects for Parkinson’s is another example of an organization that was founded by people living with Parkinson’s and are making their mark on the clinical trial process. Since the prioritized compounds have already been tested for safety and efficacy, smaller trials that target Parkinson’s related symptoms can be underway sooner with results out to the patient community as quickly as possible.
Now, on to the mission…
As we embark on the next level of advocacy from the patient perspective, a clear reality sets in and places in front of us the key to new or better treatments and therapies, and the elusive cure. In short, we need the right number of people committed to helping advance research by volunteering in trials and helping us at Parkinson’s Movement to engage with the research community with clinical trial recruitment and retention AND advocating for adequate funding (that also includes raising funds for research) that allows the best science to combine with the best scientists around the world to allow this to happen.
Please sign up at: http://www.parkinsonsmovement.com and let us know that you’re ready to join the list of heroes needed to help make a difference.