Earlier this week the Children’s Tumor Foundation participated in the fall meeting of the Health Research Alliance, a collaborative of foundations focused on advancing biomedical research. Loosely assembled in 1999 and incorporated in 2005, HRA now includes 39 member organizations ranging from large entities such as Howard Hughes Medical Institute and the American Cancer Society, to small Foundations such as Children’s Tumor Foundation, which has been a member of HRA since 2006. HRA initiatives include gHRAsp, the first-ever publicly accessible and searchable database of grants funded by foundations. gHRAsp already contains $2.5B of grants disbursed by HRA member foundations, a figure that is an illustration of the heft that nonprofit research funding represents collectively.
HRA’s twice-yearly meetings allow foundations to share research program models, present successes and challenges, and compare notes on coping with the impact of the economy on research funding. The fall meeting of HRA came at a time of many pending changes in biomedical research and healthcare under the new administration. Excitingly HRA was addressed by Dr. Francis Collins, newly appointed NIH Director as well as Dr. Margaret Hamburg, newly appointed FDA commissioner. Dr. Collins theme for biomedical research was ‘a time of promise and a time of peril’. There has been tremendous excitement around the $10B of extra funding released to NIH through the American Reinvestment and Recovery Act. However funds must be spent over two years and the concern is that by 2011, there will be a cliff-like drop off of available NIH funding for science. The fear is that without change, overall NIH funding success could drop as low as 8% in 2011. Dr. Hamburg noted that though the FDA regulates 25cents of every consumer dollar, historically the agency has been underfunded, and this has been a factor in the slowness of advancing drug and medical product approvals. It is hoped this will now change. FDA has been endeavoring, with a view of research and drug development as a continuum, to engage basic researchers more actively in ‘regulatory science’ – the process of what is required to get a drug approved. FDA is also now more transparent and will allow access to data from drug reviews whether they have, or have not, been approved. The goal is that this information will help overall with development of future drugs.
The ARRA program and its implications were recurring themes at the HRA meeting. There is concern among many foundations about what will happen once the ARRA funding disappears in 2011, especially given the fact that I the current economy most Foundations are less able to step in and continue supporting promising research. Also, there is the question of whether those funded will meet government expectations of ‘ARRA success.’ Awardees should be able to meet the expectation of hiring staff (job creation is a key element of the ARRA NIH funding). However there is more concern whether recipients will really be able to show progress in two years, since scientific progress is a slow-moving beast. The concern is that if ARRA funding does not meet government expectations this could potentially have a long term damaging effect on future NIH funding. The lack of overall funding available at NIH is already causing ructions among researchers: an article in the September 22 New York Times discusses anxieties among senior researchers who feel their grant applications are being passed over for funding in favor of new/more junior investigators.
Other HRA discussions focused on the emerging importance of patient registries and biobanks and the question of whether or not foundations should take a more aggressive role in endorsing and managing the clinical trials pipeline for their disease area. In addition there was some focus on the administrative difficulties of signing research agreements with institutions, which can hold up research, and how we can accelerate these. Finally given these financially trying times a major focus of discussion was on how foundations can work together to co fund research, with groups including HHMI discussing how this can be done effectively. Overall, HRA is a terrific forum for us to participate in as it is an opportunity to recognize we are not alone in the challenges we face as research funders, but rather that that there is a strong collaborative network in which we can participate.
For more information on the Health Research Alliance visit www.hra.org
