The Politics of Pain | Proto Magazine | Oct 02, 2015 | Re-post
This was written 2 years ago, but it’s still a good overview of the history of the National Pain Strategy.
A national pain strategy: Decades in arriving, tangled in an epidemic of painkiller abuse, will it ever emerge to help those who need it?
TERESA SHAFFER’S chronic back pain began 25 years ago, after she gave birth to her third child. It was so severe that she could barely get out of bed, and so began a frustrating odyssey from one physician to another.
Many were skeptical about her symptoms, and it took years before she got a definitive diagnosis—incurable, progressive osteoarthritis that had caused irreversible deterioration of the cartilage in her joints and the disks in her back.
But with few effective treatment options and limited insurance coverage for physical therapy and psychological counseling, Shaffer, who lives in West Virginia, has mostly had to learn to live with pain. “It’s extremely frustrating, because medication alone isn’t enough—you need a whole toolbox of treatments,” Shaffer says.
Powerful painkillers are currently the most prevalent [and effective] treatment option.
New regulations limit how often and for how long opioids are prescribed, the FDA has mandated more research on the drugs’ effects, and drugmakers are under pressure to make “abuse deterrent” pills.
But the parent problem—finding ways to relieve patients’ pain—has seen less progress. Some experts contend that more comprehensive approaches to treating pain could help alleviate the problem of prescription drug misuse.
“If we take better care of people with pain, it can only help with the oversubscribing of opioids,” says Linda Porter, a neuroscientist and program director for the National Institute of Neurological Disorders and Stroke.
To that end, Porter and scores of other national experts have joined together to devise a new federal initiative on pain. The panel is calling for a comprehensive approach that includes everything from a public awareness campaign to new research, improved therapies and better education for clinicians.
Those objectives are part of the “National Pain Strategy,” the 72-page draft of an action plan that the U.S. Department of Health and Human Services (HHS) delivered last April.
The biggest worry, says Gregory Terman, a professor at the University of Washington and president of the American Pain Society, is that this effort will get lost amid the urgency of dealing with the opioid crisis.
PAIN IS ONE OF THE top reasons most people see their doctors. Lower back pain is the most prevalent, followed by severe headaches or migraine, and neck pain.
Yet most physicians are poorly equipped to manage such problems, and a recent study of North American medical schools found that only four U.S. programs had required courses on pain.
Pain research, too, has lagged. Calls to add a pain institute at the National Institutes of Health led instead to expanding the role in 2003 of the NIH Pain Consortium, which had been established seven years earlier, to increase pain research, funding and collaboration. Today, the panel includes representatives from 17 NIH institutes and four centers.
NIH funding for pain studies remains comparatively small, with $514 million estimated for 2016, far short of the $5.5 billion allocated to cancer research or the $1.2 billion for heart disease. “Investment right now is less than four dollars per American who is dealing with pain,” says Veasley, who herself has chronic pain caused by a car accident when she was a teenager.
A large proportion of that portfolio remains in basic research, and though strides have been made in understanding the biological, cognitive and psychological underpinnings of pain, many gaps persist, particularly in translating effective treatments from research into practice
“The core issue really is the lack of productive and coordinated translational research over the past five decades, which has resulted in pain management overwhelmingly relying on opioid analgesics,”
The law with the greatest impact on pain management is the 1970 Controlled Substances Act, which, among other provisions, holds practitioners legally responsible for the proper prescribing and dispensing of opioids. But during the 45 years since it became law, advocates have repeatedly attempted to make pain itself a public health priority.
The Pain Care Coalition, for example, formed by the American Academy of Pain Medicine, the American Headache Society and the American Pain Society in the late 1990s, succeeded in having the first 10 years of the new century designated the Decade of Pain Control and Research. That occasioned considerable academic and clinical work and resulted in an explosion of new treatment guidelines for physicians.
But the only national legislation was the initial congressional proclamation. And while several versions of proposed legislation known as the National Pain Care Policy Act have been debated over the years, it wasn’t until 2009 that a Senate committee voted unanimously to include provisions for increased pain research and education in the Affordable Care Act, signed into law in 2010.
The law required HHS to enlist the IOM for a broad analysis of the issues surrounding pain and to recommend improvements. And in 2011, the IOM released a seminal 382-page report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research.” Most health care professionals, medical societies and advocacy groups applauded the report’s findings and recommendations.
But amid the overwhelming demands of budget sequestration and implementing the ACA, pain policy became a lower priority.
The IOM report called on HHS to create a comprehensive strategy for pain prevention, treatment and research by the end of 2012. But by late summer of that year, despite repeated meetings between pain policy advocates and HHS officials, nothing had happened.
a newly formed 12-member NIH panel—the Interagency Pain Research Coordinating Committee, or IPRCC—and requested that the panel take on the responsibility of drafting a national pain strategy,
Stanford’s Sean Mackey, a founding member of the IPRCC, complained that the panel was a research group and didn’t have the resources or expertise to enact such an important, far-reaching strategic plan. But Koh responded that if the IPRCC didn’t come up with a plan, “it wouldn’t happen for years,” Mackey says.
By early 2014, Mackey and Porter had the wheels turning, assembling 80 pain experts from within the government as well as from academic centers and advocacy groups to draft the document.
Six working groups broke off to address specific pain issues. Members of each group were asked to agree on three or four specific objectives—“achievable goals, nothing pie-in-the-sky,”
the group ultimately called for establishing core competencies for education, certification and licensing—which would aim in part to incorporate particular skills and knowledge about pain into the accreditation requirements for physicians and other care providers.
The document expressly frames many objectives as “biopsychosocial,” calling for biological, psychological and social factors to be addressed in pain treatment.
And the report frequently points to a need for more and better data and research. It emphasizes using tools such as electronic health records and new online pain registries to learn more about how pain is treated.
Other goals of the National Pain Strategy are to
- develop self-management programs for patients,
- a national public awareness campaign, and
- better reimbursement models that would reward coordinated, comprehensive pain care.
The draft policy is ambitious and brings together far-flung constituencies in the pain community that not only helped draft the report but are also charged with implementing the steps it outlines. And its release in April was greeted with mostly positive reviews.
it was the draft’s stance on opioids that drew the most flak. The report endorsed these drugs as an essential component of pain treatment for some patients, although it did note that insufficient research data exist to identify those at risk for addiction and other adverse effects.
A call for a national education campaign “encouraging safe medication use, especially in opioid use, among patients with pain” prompted a letter from Physicians for Responsible Opioid Prescribing, or PROP, asking that the notion of “safe use” be struck, among other modifications.
“The National Pain Strategy is skirting the opioid issue, which is really the core of what’s wrong with pain management in this country,” says Jane Ballantyne, a physician and president of PROP. “There is no evidence that the long-term use of opioids is safe, effective or cost- effective for chronic pain conditions.”
Again, there is NO evidence of any long-term opioid use because such studies have not been done (and would probably be unethical)
Some supporters are concerned that it’s not yet clear which government entity will be responsible for beginning to implement policy changes. “We want to know who will be accountable, and what the next step is,” says Mackey.
“Given all the attention to the opioid crisis, the majority of legislators are unaware of the issues of chronic pain, and there’s a lot of misinformation about what that is, and how chronic pain relates to prescription drug abuse,”
In other words, most of the people concerned about the use of oioids don’t know what they’re talking about. They know nothing about pain management using the drugs they are worried about (and I suspect they don’t want to know).
Some groups are also concerned that time may be short. Since the draft came out as part of the Affordable Care Act, there are worries that if a policy doesn’t get rolling by the next presidential election, it might never go anywhere.
“National Pain Strategy: A Comprehensive Population Health-Level Strategy for Pain,” U.S. Department of Health and Human Services, April 2015. A panel of 80 experts outlines the stakeholders, goals and next steps for more coherent and effective management of pain.
“Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education, and Research,” Institute of Medicine, June 2011. The study mandated by the Affordable Care Act outlines the need for population-level solutions to pain.
ConsumerPainAdvocacy.org A coalition of 16 consumer organizations working to raise awareness of pain is monitoring the progress of the National Pain Strategy draft