Some take out second mortgages to fund their own research. Others give up and leave the U.S. to pursue less financially fraught pastures. The majority spend up to 55 percent of their time churning out grants that have only a 10 percent chance of success. All are desperate to make strides against cancer, diabetes, Alzheimer’s, and other diseases but are continually thwarted – not by lab failures, but by dwindling funds from the National Institutes of Health.
The grim realities of publicly funded research were the focus of a roundtable discussion Monday between U.S. Rep. Suzan DelBene, who represents Washington’s 1st Congressional District, and scientists and representatives from some of Washington’s leading biomedical and health research institutions.
“All across the country, Americans are suffering from heartbreaking conditions,” DelBene said afterwards. “If we are serious about breaking new ground in our understanding of complex diseases like Alzheimer’s and cancer, it’s imperative we boost investments in medical research.”
Organized by DelBene, hosted by Fred Hutchinson Cancer Research Center and held on the eve of a major Congressional budget vote, the discussion on the current state of research highlighted both the discoveries made possible by NIH funding and the crucial need for continued investment.
“We’re really appreciative of your strong and effective support of the NIH; we know how hard you work for that,” Fred Hutch president Dr. Gary Gilliland told the congresswoman, acknowledging DelBene’s ongoing efforts to convince her colleagues in Washington, D.C., to restore NIH funding to previous levels.
Last month, DelBene led more than 100 House members in urging the House Appropriations Committee to provide NIH with at least $32 billion for 2016. In 2014, she organized a similar campaign to push Congress to fully restore NIH funding to pre-sequestration levels for 2015.
‘Science moves at the pace you make it move’
Gilliland and Hutch deputy director Dr. Fred Appelbaum kicked off the discussion by pointing out how essential NIH funding was to cancer research, particularly as new innovations like immunotherapy continue to show “spectacular” progress, allowing doctors to, as Gilliland put it, “cure cancers as opposed to treating cancers.”
“It’s a very exciting time in biology and therapy,” he said. “This is the time in cancer when we really need to double down.”
Several pivotal Fred Hutch discoveries were funded by the NIH, including bone marrow transplantation, immunotherapy, HIV research and the Women’s Health Initiative study that found a link between hormone replacement therapy and breast cancer.
“Right now, there are about 20,000 fewer cases of breast cancer occurring in the United States because of the Women’s Health Initiative,” said Appelbaum, referencing the study that yielded a $37.1 billion return on the NIH’s original $260 million investment. Today, clinical researchers are seeing “amazing responses” in immunotherapy and other innovations.
“But it takes funding to make that happen,” he said. “Science doesn’t just move at its own pace. Science moves at the pace you make it move.”
And that pace has slowed.
In the last decade, the NIH’s purchasing power has declined more than 22 percent due to budget cuts, sequestration and Congress’ failure to keep pace with inflation.
Leaders from the area’s biomedical research institutions (including the WBBA, which boasts 680 member organizations), painted a bleak picture of what, exactly, that loss of funds has meant for their work: less innovative research, greater competition for fewer dollars, abandonment of promising clinical trials, dwindling support for young researchers, a steady migration of talent to other countries and even work without pay.
“There’s real suffering out there,” said Dr. Sharona Gordon, a University of Washington physiology/biophysics researcher. “Salary support for many, many faculty … comes in part or in whole from the NIH. When they’re in between grants … they’re funding their research from their own pockets by depleting their retirement funds and taking out second mortgages.”
Losing a new generation of scientists
Many at the table expressed dismay over the loss of a new generation of scientists, especially minorities and women. Grad students and postdocs, Gordon said, are “choosing to leave science because the prospects of success seem so distant.”
Fred Hutch clinical researcher Dr. Jennifer Adair spoke of promising clinical trials, like one she was recently involved with for glioblastoma (the same type of brain tumor that killed Sen. Ted Kennedy), that fail to move on because of a lack of NIH funds.
“We focused on the poorest prognosis patients and … almost doubled their survival,” she said. “But we haven’t completed that trial yet and we can’t because there’s no other funding for it.”
Dr. John Wecker, president and CEO of Pacific Northwest Diabetes Research Institute, noted that the NIH has become much more risk averse to “funding novel, innovative research.”
“In a time of shrinking funding, the NIH is going for ‘guaranteed’ [findings], and of course there are no guarantees in science,” he said. “Granted, some high-risk innovative research may fail, but at the same time it offers opportunity for high reward.”
Many in the room wanted to know what they could do to get through to lawmakers.
“I’m very interested to hear from you what we can say differently to help Congress understand the importance here,” said Lisa Cohen, executive director of the Washington Global Health Alliance, pointing out how NIH funds have led to the discovery, development, and delivery of crucial public health advancements in areas like HPV and infectious disease.
“Think about the issues that we’re dealing with – and that we will be dealing with,” she said.
‘Consistent funding is key’
DelBene, who spent part of her early career in the lab doing NIH-funded research, was sympathetic, supportive and quick to underscore the importance of consistent investment in medical research, which not only saves lives but provides more than 300,000 jobs at 2,500 research institutions nationwide.
“Those decades of research have put us in the place we are today, and we need to build on that,” she said. “And consistent funding is key. As you all know, research isn’t something that starts and stops. That’s one of the things we need to remind members of Congress about.”
She also pointed out the importance of research’s return on investment.
“The dollars we’ve invested in research have given us a great return in discoveries, in impact on people’s lives, and in economic return,” she said. “Sometimes, when you spend a little bit of money, you actually save a lot of money. The key challenge for all of us is to continue to make sure people understand that story. And also understand that these are investments we’ve built on for decades. Research builds upon itself. You can’t look at an individual year in a vacuum.”
As for the upcoming vote on the omnibus federal funding package, expected later this week, DelBene said she was hopeful.
“There’s been strong support, there’s been a big bipartisan push,” she said. “This isn’t a partisan issue – people on both sides of the aisle understand the importance. I’m hopeful. But it’s a challenge across the board.”
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Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she also writes the breast cancer blog doublewhammied.com. Reach her at firstname.lastname@example.org.