Through the years of advocating for adequate funding for biomedical research, we have come to a crossroads that begs the question as to what is the quality of the research being conducted vs. the amount of funding that is being committed to Parkinson’s Disease research. There is no doubt that researchers are doing their best, just as there is no doubt that the quality of the grant applications submitted to NIH/NINDS is of much worth, but when only 13% of grant applications get funded, we are not where we need to be in terms of the best research available to get us better treatments, new therapies, and the eventual cure.
In recent months, there seems to be a shift in the mindset of many legislators in support of the 21st Century Cures Act, followed by the Innovation for Healthier Americans, and President Obama’s Precision Medicine Initiative. Reading through the draft bill, the language is very heavy on patient engagement, which is much of what we in the advocacy community have been searching for in the last few years. With the Parkinson’s Action Network’s guidance, the patient-advocacy community has submitted comments that speak directly to requiring patient engagement in the clinical trial process. Some may say it is the perfect storm brewing in Congress, yet others may say that it is the result of patient, committed, relentless, tenacious patient-advocates from many disease groups and conditions having their voices listened to in the legislative process. I would vote for the latter, but will give credit for the background work being done by the Energy and Commerce Committee for developing a draft bill that embraces the patient community in all aspects of the proposed legislation. Having had some experience in fighting for change in policies and guidelines currently in place, I find myself working every angle conceivable, every contact ever made aware of the potential benefit to include language for clinical trials that seek volunteers to require a recruitment committee to help develop an outreach plan for recruitment and retention of clinical trial volunteers.
The rallying cry for the 21st Century Cures Act is that we need a streamlined effort from the NIH and the FDA so that cures are accelerated. This is as exciting a time as we’ve had in quite a few years because there continues to be growing bipartisan support for this legislation and it holds promise that some good will come out of such efforts.
Regardless of what happens, there seem to be much more quality conversations as to what the patient community is capable of offering when it comes to advocating for federal funding for biomedical research, getting involved in the clinical trial process, or engaging with researchers and scientists on how to get results out to the communities sooner. My thought is that more and more people involved in any capacity in the clinical trial process are realizing that “the way it has always been done before” is shifting to “let us work together to find the answers needed to improve the health-related quality of life of all Americans”.
So… whichever side you are on when asked about a perfect storm or the tireless efforts of so many in the advocacy community pushing and pulling for change, as long as the patient community wins out in the end, with much needed results, then our countless hours of toiling in the advocacy arena have not been in vain. Samuel Beckett’s quote, “Ever Tried, Ever Failed. No Matter. Try Again. Fail Again. Fail Better”, pretty much sums up what we’ve been doing working for change. Now that change is imminent, it’s time for us to try again, succeed again, and succeed better….