Priority Setting at the NIH inclues work on SCi

[giambjj]

Sometimes it was not so easy to say no. Late one afternoon in May of 1996, as I was walking on the NIH campus, my driver pulled up with an urgent expression and asked me to take an emergency call on the car phone. A senior member of the administration—frankly, I don't remember who it was—told me that President Bill Clinton had just met the recently paralyzed actor Christopher Reeve for the first time that afternoon and had promised in the presence of the press to increase spending on spinal cord research by $10 million. I started to explain the difficulties of doing this when the phone was passed at the other end to a more junior person who said, basically, "just do it, don't argue, or you won't get the money." Of course, the White House was not in a position to send us any additional funds directly. But the president's wishes are always obeyed. When the next accounting was made of disease-specific spending at the neurology institute (formally known as the National Institute for Neurological Diseases and Stroke, or NINDS), the funds for spinal cord research were accordingly higher, and funds for other purposes were proportionately lower.

Advocacy narrowly focused on a single disease is often problematic for leaders of the NIH, because such advocacy is likely to be inconsistent with the ways science works best. Furthermore, the goals of such advocacy are often spending levels that are difficult to measure accurately. For example, research on a specific neurological disease, like ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), should, in principle, include basic studies of nerve cells and mechanisms of cell death, in addition to clinical trials in ALS patients, which are readily classified. The basic work may be impossible to classify by disease category, since it could help to understand many neurological diseases or others. This is where the concept of scientific opportunity comes into play: Spending funds to seize a chance to understand a fundamental principle in biology is often a more effective approach to disease than mandating funds for research on a specific disease. Furthermore, efforts to understand another disease, even one that does not affect neurons, might prove to be a more valuable means to understand ALS than work on ALS itself.


Harold Varmus reflects on his life at the agency, and some of the delicate negotiations that often precede funding decisions.

[Wise Young]

Originally Posted by giambjj

Sometimes it was not so easy to say no. Late one afternoon in May of 1996, as I was walking on the NIH campus, my driver pulled up with an urgent expression and asked me to take an emergency call on the car phone. A senior member of the administration—frankly, I don't remember who it was—told me that President Bill Clinton had just met the recently paralyzed actor Christopher Reeve for the first time that afternoon and had promised in the presence of the press to increase spending on spinal cord research by $10 million. I started to explain the difficulties of doing this when the phone was passed at the other end to a more junior person who said, basically, "just do it, don't argue, or you won't get the money." Of course, the White House was not in a position to send us any additional funds directly. But the president's wishes are always obeyed. When the next accounting was made of disease-specific spending at the neurology institute (formally known as the National Institute for Neurological Diseases and Stroke, or NINDS), the funds for spinal cord research were accordingly higher, and funds for other purposes were proportionately lower.

Advocacy narrowly focused on a single disease is often problematic for leaders of the NIH, because such advocacy is likely to be inconsistent with the ways science works best. Furthermore, the goals of such advocacy are often spending levels that are difficult to measure accurately. For example, research on a specific neurological disease, like ALS (amyotrophic lateral sclerosis, or Lou Gehrig's disease), should, in principle, include basic studies of nerve cells and mechanisms of cell death, in addition to clinical trials in ALS patients, which are readily classified. The basic work may be impossible to classify by disease category, since it could help to understand many neurological diseases or others. This is where the concept of scientific opportunity comes into play: Spending funds to seize a chance to understand a fundamental principle in biology is often a more effective approach to disease than mandating funds for research on a specific disease. Furthermore, efforts to understand another disease, even one that does not affect neurons, might prove to be a more valuable means to understand ALS than work on ALS itself.


Harold Varmus reflects on his life at the agency, and some of the delicate negotiations that often precede funding decisions.

giambjj,

For 23 years (1982-2005) I served sequentially on various committees of the NIH, first on various committees responsible for reviewing NINDS (the neurological institute) program projects and then neuroscience training grants. In the 1990's, I was tapped by NICHD (the child health institute) to serve first on the medical rehabilitation advisory board and then subsequently on the Council of NICHD. I was on study sections for the small business innovative research (SBIR) and other reviews. I am telling you this because I want to point out how much role scientists play in decision making at the NIH.

NIH doesn't like politicians or advocacy groups telling them what science to fund. There is always a sense that every advocacy group wanted as much money as possible for thier disease, regardless of science and need, or the quality of science that is being done. This attitude is also prevalent amongst politicians who are jaded by the influx of advocates who are always pleading for more funding. As several put it, they don't want to fund the disease of the week. They want to fund good science.

During the Clinton Administration, NIH provided disease-specific funding but Bush stopped the practice. The numbers were of course malleable. In 1995, the amount that NIH spent on spinal cord injury research was estimated to be $48 million. After Christopher Reeve convinced the Clintons to add some funds for spinal cord injury research, the number increased by a couple of million in 1997. In 2002, the CRPA was introduced in Congress, after substantial negotiations with NIH. Despite NIH support for the bill and careful parsing of the bill so that it contained no language relating to stem cells, the bill was held up by the Republican leadership. Christopher Reeve died in 2004, shortly before the election. In 2005, we started holding rallies in Congress to push for the passage of CRPA. In 2007, the bill was renamed CDRPA to include Dana who had died and the House passed the bill but it was held in Congress. In 2008, CRDPA was added to an omnibus bill for land management (S.22) and the Senate it passed it. The House is now considering it.

Wise.