The beauty of blogging is that you get a chance to receive comments, questions, etc. from those that are kind enough to take the time to read the post and follow-up on these. The focus of my posts is to share some of my experiences, perhaps get some to think of different ways that things should be done, raise curiosity, and if at least, provide a forum for people to express their views about the status quo and suggest ideas for change. My previous blog post seems to have done just that, piqued interest in the grant application process, If the content gives people a chance to feel passionate enough to seek change, for the better, then it has accomplished its mission.
The intramural-extramural issue for me has gone on for three years now. I had the pleasure of meeting Dr. Story Landis at a PAN Forum where she spoke about the PD research being undertaken at the NIH/NINDS. She mentioned that the studies taking place at the time were proceeding ahead of schedule, which was unheard of in research. I send her an e-mail when I return home and share my experience and express my concern about the disparities in the intra/extra mural funding. Her response is, “You raise an interesting point and one that we should take a closer look at… I am forwarding your e-mail to the team at NINDS for them to discuss further”. I copy the Parkinson’s Disease Foundation, who graciously offer their services in setting up a meeting with all parties involved to discuss the issues and seek the necessary change that I propose. We continue to wait for NINDS to respond and in the meantime…
I visit with the legislative director for my congressman and share my concerns. He comments that he is not too familiar with the intricacies of the grant process but that he will do some research, contact some people who work for one of the health-related committees, and respond to my request. As with most things related to issues beyond the usual requests that go through a congressman’s office, it takes a bit of time but he does respond. He will set up a meeting with a representative of my choice from NINDS, a representative from my congressman’s office, and myself the next time I’m scheduled to be in Washington. Fair enough I say. I’ll give plenty of notice for a meeting to be scheduled. I must say that my congressman and his office have always been very supportive of my requests, issues that I have concerns about, but are also willing to sit and share his views and explain his reasoning on how he stands on an issue and provides suggestions on how to effect change. I’ve yet to have an opportunity to return to Washington, but in the meantime…
My e-mail to Dr. Collins, NIH Director, is received and graciously acknowledged and in his response tells me that he will forward my request to his Associate Director in charge of extramural programs. He responds within a couple of weeks and is pleased to tell me that extramural research grant applicants can request funding to cover costs associated with participating in the clinical trial process. I appreciate his response but it still leaves me in the same position as before.
I should interject a bit more information at this point. The NIH/NINDS grant application process is not for the weak of heart. It is a daunting task that takes much research, projections, and huge efforts from any individual, organization, research center, etc. that is willing to jump into the arena. My issue has not been in how the grant application process is handled with overhead, direct costs, indirect costs, allowable, non-allowable, projections, etc, etc, My request is to require clinical trials that have patient participation to have as part of their budget, funds set aside to cover the costs associated with being involved. A certain amount, a percentage, across the board. I understand that there are differences with the intramural and extramural process but something needs to change in order to get trials completed sooner. I would challenge someone to compare the costs of an initial awarded grant that has to request more funding because of having to extend a clinical trial, to one that adds a certain percentage amount to the same initial awarded grant that can provide equal access to anyone that qualifies for the trial, regardless of ability to afford costs related to participating. Now back to the timeline….
I visit with Dr. Kauffman at NINDS and explain my concerns. She is kind to listen and say that it is an issue but she suggests that non-profit organizations should get involved and help cover the costs associated with participating because of the budget issues that we are dealing with in the states. My response to her includes the fact that with the amounts of awards that are granted and the dollar amounts included in those grants that I would like to revisit my request to include money up front, rather than having to pour more money into trials that go beyond their expected completion time.
So…perhaps this explains the process that I’ve been going through in the last three years to get someone to listen. I’ve been able to be heard, but to be listened to and be able to effect change has been a much greater challenge.
My advocacy style has been described by some as respectful but tenacious…
If it means that equal access is available to all that are willing to participate without having the cloud of doubt as to whether or not they can afford to do their part… I’ll remain tenacious and persevere because as Goethe is credited with saying,
“In the realm of ideas, everything depends on enthusiasm. In the real world, all rests upon perseverance”.