Dark Days for Medical Research

Scientists at the National Institutes of Health, the federal agency with a $30 billion budget responsible for funding medical research across the country, probably woke up Tuesday morning with, at best, audible sighs.

First, in the spring, there was sequestration—the automatic, across the board spending cuts that lopped off 5.5 percent of their budget. Now, thanks to the government shutdown, 73 percent of NIH staff is sitting at home, furloughed—among them, some of the most brilliant scientists and medical researchers in the word—and, thanks to a Congress whose mental health is open to debate, they've been put in the untenable position of turning away 200 patients to the NIH Clinical Center, including 30 children, many of them cancer patients.

The person tasked with leading this besieged organization is Dr. Francis Collins. Before he was director of the NIH, Collins made headlines around the world in 2000 for leading the Human Genome Project, the global effort that unlocked the secrets of human DNA—a paradigm-shifting advance that firmly established him as one of the most significant scientists of our generation. In 2009, President Obama tapped him to become NIH director, ostensibly becoming dean of the nation's health and leading the largest biomedical research agency in the world—all in the midst of a recession.

"When I started I did not imagine it would get this bad, to be truthful," Collins said. "I don't think anyone imagined when the concept of the sequester was laid on the table that it would happen. It was supposed to be this poison pill that was so painful, so destructive that it would never come to pass and yet, well, the Congress swallowed it and we all got poisoned." With the government shutdown, Congress has decided to double the dosage.

Sequestration was painful enough for the medical research community. As a result of the budget cuts, the life sciences are projected to lose 20,500 jobs this year. NIH's fiscal 2013 budget fell by $1.71 billion, or 5.5 percent. "That's the size of my whole budget for a year," said Dr. Story Landis, referring to the $1.6 billion budget she oversees as Director of the Institute of Neurological Disorders and Stroke. If sequestration is not reversed, NIH could lose $19 billion over the next decade. And after 10 years of flat budgets worn away by inflation, the NIH's purchasing power has been cut by almost 25 percent compared to a decade ago—a weakened stature that is a far cry from the period between 1998 and 2003, when the NIH budget was doubled.

Now, until the government reopens, the NIH will halt action on grant applications and awards—meaning all new medical research is grounded—and the NIH Clinical Center will not admit new patients.

The importance of funding research to cure cancer, prevent heart disease and fight horrible conditions like Alzheimer's and Parkinson's is a rare point of agreement among the overwhelming majority of Americans and, even more rare, Congress. A recent Research!America poll showed a majority of Americans, 83 percent, believe that investing in medical research is important for the US economy. That sentiment is echoed on both sides of the aisle, where there is bi-partisan agreement that Washington's dysfunction should not harm the NIH. Last summer, Senate Majority Leader Harry Reid started lobbying fellow lawmakers to reverse the NIH's budget cuts and Senator Tom Coburn, no fan of government spending—recently being ranked the 12th most conservative senator by National Journal—supports that effort.

"We shouldn't be cutting back on that at all," Coburn, who is also a doctor, said in May. "We're almost at a new frontier in terms of medical research and scientific discovery … We have so much waste in other areas of the government that we shouldn't have to cut NIH at all—as matter of fact, we should be doubling it again."

Accounting for the sequester, Collins recently told Congress that NIH intends to award 650 fewer grants, compared with 2012, any number of which he contends could have led to a significant discovery.

"It is hard to prove a negative," said Collins. "We will not know what grant that was going to lead to the next breakthrough in cancer research didn't quite make the cut. We will not know what brilliant scientists, who were going to win a Nobel Prize, basically gave up because of the failure to get support from the current system and decided to do something else or move to another country. We won't know. That is the sad tale that is wrapped up in all of this."

Privately, those in Congress and at NIH hope the looming debt ceiling debate might present hope for restoring NIH's funding. That a deal for NIH is possible. But with Washington's dysfunction at an all time high, as evidenced by the shutdown, hope is fraying.

"It's unimaginable that our country, that prides itself on science, technology, innovation and reason, would have allowed this outcome to occur," said Collins. "But here we are, I did not imagine this."