A new report on pain in the United States estimates that 119 million Americans, or one-third of the population, suffer from chronic pain, which costs the country on the order of $600 billion annually in health care bills and lost productivity. The report, from the Institute of Medicine at the National Academy of Sciences, calls pain a major public health issue in the U.S., and urges a “cultural transformation” in the nation’s approach to pain management and prevention.
The report highlights the dearth of support for pain research at the National Institutes of Health and other federal agencies, and calls for the NIH to reorganize its activities related to pain to provide more focused leadership and resources to the field.
“The primary message of the report is that there must be a significant change, namely, a transformation, in how pain is viewed,” committee member John Farrar of the University of Pennsylvania, Philadelphia, wrote in an email to PRF. “Pain is most common as a symptom related to a disease or injury, and we all experience some pain every day of our lives. However, when pain becomes chronic, it is no longer a symptom of another disease but often represents molecular or cellular changes to the nervous system, not unlike problems like Parkinson's disease or memory loss. When this happens, chronic pain becomes a disease of the nervous system that must be treated directly and specifically.” Farrar calls this idea “a paradigm shift” that will help to focus pain treatment and research.
The report includes a set of recommendations that the committee calls “a blueprint for transforming the way pain is understood, assessed, treated, and prevented.” The panel recommends sweeping changes at all levels—from patient education, physician training, and organization of research to health care insurance and reimbursement policies. At the heart of the report is a call for the Department of Health and Human Services to create, by the end of 2012, a comprehensive, population-level strategy for pain prevention, treatment, management, and research involving federal, state, and private organizations.
The study was mandated by Congress as part of the 2010 Patient Protection and Affordable Care Act, and funded by the NIH. Last fall, the committee of 17 leading clinicians and researchers was charged with producing a comprehensive view of the public health significance of pain, barriers to care, and approaches to improving treatment. The purpose of IOM reports is to provide independent, objective advice to policymakers, health professionals, the private sector, and the public.
In the course of the study, the panel received over 2,000 testimonies from patients and advocates, who lent an intensely personal dimension to the committee’s work, said chairman Phillip Pizzo of Stanford University in California. More than the staggering costs of pain, the human toll that was revealed “made it a moral imperative that we seek to do something about this,” Pizzo said when introducing the report at a June 29 press conference in Washington, DC.
To find out what the report means for researchers, the PRF spoke with committee members Charles Inturrisi of Weill Cornell Medical College in New York and Lonnie Zeltzer of the University of California, Los Angeles.
“Research is one of the primary modes to drive education, care, and treatment forward, ” Inturrisi said. But, he said, “There is a great disconnect between the magnitude of the problem of pain and the resources being put into solving it.”
Pain affects more people than heart disease, cancer, and diabetes combined, yet the NIH spends a paltry $200-400 million a year, or less than 1 percent of its total budget, on pain research. The report acknowledges the hard reality that funding is likely to decrease further in the near future.
One problem the committee pointed to is the lack of leadership of pain research at the NIH. Currently, pain research constitutes many small efforts spread thinly over many institutes and centers, and loosely coordinated by the Pain Consortium, a body of representatives from 19 divisions with interests in pain.
To create a more unified approach, the number one research recommendation was for the NIH to designate one institute to be the lead institute for pain.
“There should be a home for pain at the NIH, ” said Zeltzer. “Having that home will allow for an interdisciplinary and integrated, efficient, and effective pain research agenda. We’d like to see a higher percentage of the NIH budget going to pain.”
Or, as Inturrisi puts it, “Right now, pain belongs to everyone, so it belongs to no one. Somebody has to be the leader.”
The panel opined that the Institute for Neurological Disorders and Stroke would be a logical place for pain, but left the final choice to the NIH.
The group considered the question of whether the NIH should establish an Institute of Pain, but decided against recommending that course. Because of the current funding crunch, and the fact that the NIH is already at its maximum number of institutes and centers allowed by law, the group reasoned that such a proposal “would not produce a pain institute, or any other desired result.” Instead, the report says, the committee focused on “ways to reenergize and strengthen current activities…working with the existing organizational structure.”
The designated institute should have pain as a major component of its mission and take over the leadership of the Pain Consortium, which should get more financial support and more responsibility. Because most institutes are funded directly by Congress, getting pain settled in one could help increase support for pain research. “We need somebody who is going to go to Congress and present a budget that has a line item for pain,” Inturrisi explained.
Having a lead institute for pain might help with another vexing problem that the committee indentified: grant review. “The review process is suboptimal,” said Inturrisi. Projects on pain get distributed over many study sections, and there is a perceived lack of expertise on those committees. That means the best science is not always funded. “It’s impossible to get enough pain experts on the committees when they are so scattered,” he said. The committee sets improving the review process as one important task for the Pain Consortium.
Pain research is not just the purview of the NIH. “Other federal funding agencies should be stepping up to the plate in moving pain research forward,” said Zeltzer. To help that, the leading institute would also be home for the new Interagency Pain Research Coordinating Committee. The latter was part of the same health care legislation that mandated the IOM report, and is a super-consortium of the NIH with other HHS and federal agencies that do pain research including the Centers for Disease Control, the FDA, and others.
Other recommendations include improving the process for developing new pain therapies, rather than recycled versions of old ones, and increasing support for interdisciplinary research across agencies, disciplines, and professions. Public and private funders should increase conduct of longitudinal research (including comparative effectiveness research and novel trial designs), the committee says. In all these efforts, public-private partnerships will be important. Finally, they find the lack of scientists working in pain a “significant barrier to advances,” and emphasize the need to increase the training of pain researchers.
The Sticking Point
“The report clearly states that a substantial investment of research funding specifically focused on pain and pain therapies will be necessary to make the substantial improvements we all hope to see in the near future,” Farrar wrote to PRF. “We hope that this will improve the ability of researchers of all types to obtain funding for their important efforts.”
But where will that money come from? With the release of the new cost figures commissioned for the IOM report, that has become a $600 billion question.
You can read the full text of the report “Relieving Pain In America: A Blueprint for Transforming Prevention, Care Education and Research.” Have you taken a look? Please share your thoughts: What do you believe are the most important issues the IOM committee raises (or doesn’t)?