“I am an eating disorder survivor,” began the speaker, a young woman with long hair and a slight frame. “Anorexia nervosa held me hostage,” she said of the disease that drove her to starve herself down to just 55 pounds as a teenager. “I would limit myself to 200 calories a day, and I would run 12 miles every day,” just part of a grueling workout routine. She nearly died, but with the help of a skilled doctor and her family’s support, Naomi Charalambakis recovered. In some ways, though, she said, anorexia is “a mental illness that never goes away.”
During the ordeal, one question kept surfacing for Charalambakis: “What’s happening in my brain?” That question eventually drove her to pursue a PhD degree in neurobiology at the University of Louisville in Kentucky, where she is currently studying brain circuitry in the visual system.
Charalambakis was speaking at the annual meeting of the Society for Neuroscience (SfN), where over 30,000 scientists gathered in Washington, DC, from November 11-15, 2017, to share research data; this meeting is the world’s largest neuroscience conference for scientists and physicians seeking to understand the brain and nervous system. The particular forum at which she offered her ideas, dedicated to science advocacy, was titled “Advocating for Basic Science in a Disease-Focused World.” Basic science refers to the fundamental research, performed in cells and animals, required to understand biological systems before new disease treatments can be developed.
Forum chair Bill Martin of BlackThorn Therapeutics in San Francisco, a company that is developing new treatments for neurobehavioral disorders, said that society “is so focused on cures,” but that basic science is critical to solving health problems.
“The lag between scientific discovery and new treatments”—which can last years, if not decades—“often clouds the value of basic science research” to society, said Martin, who is the chief scientific officer of the company.
As a graduate student, Charalambakis quickly realized that funding for scientific research is becoming increasingly scarce, and she wanted to speak up in Congress and in her community in support of funding. In 2015, she served as a science policy intern at Research!America, a non-profit group working to promote medical research in the US. Charalambakis later served as an SfN Early Career Policy Ambassador, and created the Science Policy and Outreach Group at her university. She has coordinated laboratory tours, school visits, and meetings between scientists, students and policymakers around Louisville.
Pain research is underfunded
The lag between basic science discoveries and new treatments occurs in pain research, too. Despite tremendous gains over the past twenty years in understanding how pain affects the nervous system, those insights have borne few new treatments for patients so far. But research into the basic science of pain is critical to developing safe and effective pain therapies of the future. Francis Collins, director of the National Institutes of Health (NIH) and Nora Volkow, director of the National Institute on Drug Abuse (NIDA), wrote in July 2017 in the New England Journal of Medicine that finding effective, non-addictive treatments for chronic pain is one of three crucial strategies to combating the opioid crisis—an endeavor that will depend on basic pain research.
That research, though, is sorely underfunded. Of the money paid out by the NIH, the branch of the US federal government that supports basic science research, only a tiny fraction goes to chronic pain research—less than half a billion dollars in 2012. In contrast, cancer research was funded to the tune of five and a half billion dollars, and HIV/AIDS research received over three billion dollars. The funding seems to reflect an imbalance in priorities, given that the societal cost of AIDS has dropped to just half a billion dollars per year, whereas the cost of chronic pain exceeds that of cancer, heart disease and diabetes combined, at an estimated $635 billion annually, according to a 2011 report from the Institute of Medicine.
While the SfN session on advocacy was being held at the convention center, pain researchers Robert Gereau and Jose Moron-Concepcion, both of Washington University in St. Louis, were on Capitol Hill. The researchers met with staff members from Missouri Senator Claire McCaskill’s office to advocate for funding of pain research. The staffers were keenly interested in what the researchers had to say, Gereau told RELIEF after the meeting, and asked detailed questions about the state of development of new, safer opioid drugs, among other things. Gereau was inspired to request the meeting while he was in DC after a chance encounter with Senator McCaskill several years ago on an airplane, in which she expressed pointed interest in learning more about the causes of the growing opioid epidemic. (To learn more about their meeting, see a related report on the Pain Research Forum).
Other scientists, too, got into the spirit of advocacy during the five-day SfN meeting. According to a Society spokesperson, members of the North Carolina Triangle Chapter of SfN visited congressional offices, as did the Portland, Oregon-based non-profit neuroscience outreach group NW Noggin, led by Bill Griesar, who also held a congressional briefing on Capitol Hill. In addition, SfN hosted eight tours of the poster floor for representatives from nine congressional offices, including two members of Congress.
Steps to advocacy
Back at the SfN meeting, the advocacy panelists also included Mary Woolley, president and CEO of Research!America and a highly regarded expert on science policy and advocacy. Woolley had a frank message for the several hundred scientists in attendance: “You can’t outsource advocacy.” Scientists, she said, must advocate for themselves in whatever way they can, from meeting with elected officials to writing op-ed pieces in local or national publications. “Never forget,” she said, “information drives policy.”
Patients and citizens, too, can advocate for research by contacting their representatives about their concerns, by writing letters in local or regional publications, or simply by engaging others in the community about the importance of research. Polling by Research!America indicates that the majority of Americans support funding for research and believe that scientists should help shape policy. Yet, the environment today can feel distinctly anti-science, from the misguided anti-vaccine movement to climate change deniers in government, Woolley said. Woolley suggested that if people find themselves in a potentially contentious conversation about science or research, they could defuse it by finding common ground. That might be a shared sense of skepticism, Woolley said. “It’s more than OK to question statements and data.”
Rounding out the panel was Andrew Sperling, director of advocacy for the National Alliance on Mental Illness (NAMI). Some people hold the belief that scientific research is too expensive, and not a good investment, he said. But the cost of inaction is much greater. “Talk about how expensive it is without science—consider the public health burden” if there is a failure to study diseases and develop new treatments. Point out the benefits to society, he said.
“If you’re not an advocate, it could be hazardous to your career,” Woolley told those attending the forum. But Charalambakis sees a higher purpose in her role as an advocate. Perhaps, she said, “I am still on this earth to advocate for science and public health.”
Stephani Sutherland, PhD, is a neuroscientist, yogi, and freelance writer in Southern California.