I submitted two versions of testimony to the May 22-23, 2013 CFS Advisory Committee meeting. My written testimony can be viewed here. What follows is the testimony I delivered by telephone this morning:
My name is Jennifer Spotila, and I thank my fellow advocates for being there in my stead. My comments today differ from the written testimony I submitted last week, because there is new information that I must bring to your attention.
First, the FDA Drug Development Workshop put an exclamation point on the need for more research in order to accelerate the identification of effective treatments for this disease. Unfortunately, not only is our government failing to fund research commensurate with the burden of illness, but funding is decreasing at an alarming rate.
Last year, NIH projected that it would spend $6 million on ME/CFS in 2012. But when I totaled the spending for the grants linked to the ME/CFS category in NIH’s Estimates of Funding for Various Research, Condition and Disease Categories, I found that NIH actually spent just over $4.5 million. This is a decrease of almost $2 million or nearly 30% from 2011 spending.
Let me repeat that for emphasis. NIH funding for ME/CFS research in 2012 dropped by nearly 30%.
But it is worse than that. Three of those grants are unrelated to ME/CFS. These grants comprise 18% of the 2012 total. If we remove those grants, the total spent by NIH drops to just under $3.7 million.
Let me repeat that for emphasis. NIH funding for ME/CFS research in 2012 was just under $3.7 million.
Whether you use NIH’s total of $4.5 million, or you use my adjusted totals to remove unrelated grants, this is an unacceptable drop of nearly 30% from 2011 funding levels. Is this what the Obama Promise looks like? NIH funding for ME/CFS research is at its lowest level since 2008. Do I really need to repeat that for emphasis?
We are not alone in seeing a decline in funding from 2012. Of the 235 disease categories listed on the NIH site, close to 30% show a decrease from 2011 (although only 11 other categories saw a decrease of 20% or more). But this means that almost 70% saw an increase in funding, so I do not accept the excuse that times are tough.
Dr. Maier has said many times that there are not enough applications coming in. She is right. Approximately 20 ME/CFS applications were submitted to NIH last year. Obviously, such a low number of proposals will not get the job done. At the same time, NIH has invested set aside funds for other conditions in order to stimulate research. For example, the MAPP initiative for chronic pelvic pain that you have heard about at prior meetings started with $40 million in funding set aside by NIH. The RFA process exists to promote and encourage research into areas of need.
To be perfectly frank, I am tired of the chicken and egg debate of which comes first, the money or the larger number of proposals. Here’s a novel idea: do both at once. Advocates, organizations, and researchers should do everything in their power to encourage more proposals, and NIH should pony up dedicated funding. Try both and see what happens.
How can we be positive about change, as Dr. Jones said this morning, in light of these numbers? This is a crisis situation. I do not accept a 30% drop in funding. I do not accept plummeting backwards to 2008 funding levels.
The second issue I must bring to your attention is the High Priority Recommendations List that you will be asked to approve this afternoon. Less than 30 minutes has been allocated for this discussion, and my information is that you will be voting on the original list as drafted in January 2012. I am sorry to say that this is patently ridiculous. If you allow this, you will be approving a list that is 18 months old, that includes none of your recommendations from 2012, and that includes two recommendations that have already been completed. Furthermore, the wording of several recommendations have been altered from the original versions, and you will be making this decision without hearing any of the public comment scheduled for tomorrow.
If you go along with this, you are telling the patient community that designating high priority recommendations is a formality not worthy of meaningful discussion or even the slightest effort to produce a current, up to date list. I ask you, Committee members, to move this discussion to Thursday afternoon so that you can devote the attention and consideration that this document deserves. If you do not, then I ask you to vote NO and not approve the list in its January 2012 form. We deserve more than formalities. Thank you.