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Foundation Attends Unique Town Hall with New NIH Director

By September 10, 2009December 5th, 2023Awareness

The Children’s Tumor Foundation participated in a Town Hall Meeting Wednesday with the newly appointed NIH Director, Dr. Francis Collins – a meeting hailed as the first of its kind for a new NIH director. Now in just the forth week of his directorship, Collins invited the patient groups to meet with him early on in his tenure so that he can lay out his high level vision for NIH in the coming years and, given the daunting task of his office, ask for the collaborative help of advocacy groups that touch on a myriad of disorders, diseases and communities. The first few weeks for any director would be hectic but Collins has assumed his position in the closing weeks of a fiscal year that will administer not only the normal NIH budget but also an additional $10B in grants provided through the American Recovery and Reinvestment Act. Nevertheless he felt it a priority to meet with the advocacy community early on since a key part of the NIH mission and responsibility is to address many conditions and help families living with those conditions. Indeed his own interest in medical research and specifically genetics was spurred from meeting patients face to face early on in medical school.

Dr. Collins opened on the theme that we are in a time of new ideas and exceptional opportunity. Dr. Collins said that President Obama recognizes the value of science and sees is as a tool to strengthen both the American economy and fundamentally democracy. NIH must be at the forefront of this as the steward of medical and behavioral research for the nation. In addition NIH is striving for more transparency such as in the newly developed search tool RePORT which allows rapid public access to information on NIH funded research.

Given his pivotal role in the Human Genome Project, Dr. Collins said he sensed on coming to his new office that people thought he would be in support primarily of ‘big science’, major initiatives that might neglect small independent projects. He said this is not the case. He recognizes that the bedrock of NIH success is investigator initiated research and will continue to push innovation. However, he does see big science as a means of putting tools such as genomics in the hands of the individual investigator.

Dr. Collins laid out FIVE areas of opportunity that NIH will focus on in the coming years:

Applying unprecedented opportunities in genomics and other high throughput technologies to understand fundamental biology and to uncover the causes of specific diseases. This will include utilizing technologies such as imaging and nanotechnology. For example in cancer, one approach will be to attempt to catalog all of the events that can go wrong in a cancer cell. (The NIH project Cancer Genome Atlas for Brain Tumors is an example of this area of opportunity).

Translating basic science discoveries into new and better treatments. We can no longer fully ascribe this role to the private sector especially in the case of rare diseases. Also given the growing number of drug targets this becomes an area needing broader attention. In addition NIH can now fund stem cell research broadly. Given the advent of iPS technology, there is a lot to capitalize on here – but investment is needed.    (The new NIH project TREND – Therapeutics for Rare and Neglected Diseases – is an example of this area of opportunity).

Putting science to work for the benefit of healthcare reform. In terms of cost/benefit ratio, the US has one of the most inefficient healthcare systems in the world. Comparative effectiveness research, done well, is needed to address this. Healthcare research economics e.g. payment incentive systems needs examined.  In addition looking toward personalized medicine, pharmacogenomics will be a growing area. (In this area ARRA assigned a special fund of $400M (over and above the $10B mentioned above) to NIH for comparative effectiveness research).

Encourage greater focus on global health. Given the accruing knowledge on genetics and genomics, the time is right to take a global approach on health. This will need to be a partnership with the World Health Organization as well as private foundations such as the Gates Foundation.

Reinvigorate and empower the biomedical research community. Researchers have to see value in a career in science. We need to support them and make a case for the value of research. NIH offers Pioneer Awards and Transformative RO1 Awards to support researchers in their scientific career and encourage and support new ideas and support underrepresented populations. This is an exciting area: though the success rate of ARRA grants was less than 3% the program illustrated the exciting ideas that researchers could develop given the opportunity.

To the patient advocates at the meeting, Dr. Collins said, ‘I need your help’: to propagate a common consistent voice about the importance of medical research. When the opportunity presents itself, tell stories about how medical research has changed lives; develop new and compelling ways to describe NIH research to decision makers and the public; share your ideas with NIH and keep the channel of communication open. For this purpose advocates are invited to submit ideas for consideration by Dr. Collins and his staff to:


The Meeting closed with a broad-ranging question and answer session with the audience. The entire Meeting will be available by archive at