Chronic pain affects more than 100 million people in the United States and is a leading cause of suicide as well as an economic drain of more than a half-trillion dollars a year, according to the Institute of Medicine. It’s also one of the “invisible” disorders, like depression, and people who have chronic pain can find themselves misunderstood, shunned, and locked out of the treatment they need. Worse, in many cases, there is no good treatment.
“We really need to accelerate research into the neuroscience and neurobiology of pain,” said activist and chronic-pain patient Cindy Steinberg during a panel discussion on the topic at the American Association for the Advancement of Science (AAAS) in Washington, DC, on Wednesday.
“It’s pretty awful to live an existence when you’re 24/7 in pain. It’s like being trapped in a prison where you’re being tortured 24/7,” said Steinberg, now national director of policy and advocacy for the US Pain Foundation. In her experience, as she spent five years looking for help, “Pain treatment was at the stage of the doctor being blindfolded and throwing darts and hoping to hit a target.”
We’re working on that, said David Thomas, chairman of the prescription opioids and pain workgroup at the National Institute on Drug Abuse. He described the work that went into the Institute of Medicine’s call to action, published as “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research” (free PDF and online). He said a “national pain strategy” is in the works as well, due out within months.
Thomas highlighted the education part of the blueprint—especially physician and careworker education. “Healthcare providers systematically do not get a lot of training in how to treat pain,” he said. In four years of med school, on average, they get 9 hours of training; in comparison veterinary students in Canada get 87 hours of training in pain. “Something’s wrong here, and I don’t think it’s the vets who have got it wrong,” he said.
Even if you are a well-trained pain clinician, though, there are few good treatments out there, said David Borsook of the P.A.I.N. Research Group, Boston Children’s Hospital at Waltham. “There’s a disconnect between what neuroscience is doing today and what is happening in the clinic.” he said. “Defining the pain phenotype” should be a goal, using what we are learning about brain plasticity, neurobiology, genetics, neurophysiology, pharmacology, epidemiology, and imaging, to start. Ideally, “We’d like to take every patient and be able to say, we know what to do for you.”
Borsook sees many children in pain in his practice, as does another panelist Edward Bilsky of the University of New England. Chronic pain in childhood has effects that last a lifetime, not only for the child but for family members. Bilsky, a member of the Dana Alliance for Brain Initiatives, told the story of one 13-year-old whose family doctor told her to “get over it” when she said she was in pain. The family went from doctor to doctor, and when they finally did find one who correctly diagnosed her problem, it was too late—even though there are treatments that could have worked earlier, now this young woman “is homebound 90 percent of the time,” he said. For another patient, Amelia, who was diagnosed faster, treatment did work, and that young woman is active in school and in sports.
Educating doctors on workable treatments, the potential of imaging, and other biomarkers for pain, would go a long way, Steinberg said. “Giving healthcare providers more confidence and knowledge, they won’t be as fearful as they are now,” and they won’t avoid or ignore these patients.
“We need to rise out of our [academic] silos,” said Bilsky, and find the breakthroughs patients need. And believe the kids when they say something hurts: “I wish everyone could see this 7-minute video” with Amelia and her family, and they would understand the issue and the level of care everyone needs, he said.
Here you go:
This event, at the American Association for the Advancement of Sciences (AAAS) in Washington, DC, was part of the Neuroscience and Society series, supported by AAAS and the Dana Foundation. See entire session video below. Previous sessions include The Science of Illusion (story, video); Stress and the Brain (story, video); Acquiring Taste and Smell (story, video); and The Science of Sleep (story, video). The next session, on infant development, will be in mid-June.