Serious, chronic pain affects at least 116 million Americans each year, many of whom are inadequately treated by the health-care system, according to a new report by the Institute of Medicine (IOM). The report offers a blueprint for addressing what it calls a “public health crisis” of pain.
The reasons for long-lasting pain are many, from cancer and multiple sclerosis to back pain and arthritis, and the chronic suffering costs the country $560 to $635 billion each year in medical bills, lost productivity and missed work.
“I’m shocked and surprised at the magnitude of [the problem],” said Dr. Perry Fine, president of the American Academy of Pain Medicine, while attending the press conference on Wednesday announcing the release of the IOM report. He was not associated with the research.
Yet the reports’ authors said they believed that they had actually underestimated the incidence of chronic pain — that which lasts 30 to 60 days or more and takes a toll on personal and professional life — because their data didn’t include people living in settings like nursing homes. Further, as baby boomers age, the rate of chronic pain increases daily.
“Pain is an experience that affects virtually every one of our citizens,” says Dr. Philip Pizzo, dean of the Stanford School of Medicine, who chaired the committee that wrote the report. “For many patients, chronic pain becomes a disease itself.”
Issued at the request of Congress as part of President Obama’s health reform legislation, the report calls for a “cultural transformation” — an attitude shift on the level of that seen over the last 50 years toward smoking — to spur more coordinated action to help treat Americans’ pain. Pain patients have long been viewed with skepticism and suspicion, rather than understanding, presenting a barrier to care. Rising rates of prescription drug misuse, addiction and overdose have further led to the establishment of legal and regulatory barriers, such as prescription databases, that can prevent even legitimate pain patients from getting much-needed drugs.
“There’s abuse on both sides,” Pizzo says. “There is abuse that occurs when individuals are drug-seeking and abuse that occurs in that people who need pain medications may not have access because physicians won’t prescribe or the state has regulatory barriers.”
Making matters worse is the media and political attention that has been devoted to painkiller abuse and addiction. Conversely, very little attention is given to chronic pain, which affects a far greater number of people. About 9.3% of the population has drug or alcohol problems serious enough to require treatment, while severe chronic pain affects at least one in three Americans. (And yet, two national institutes are devoted to the research of addiction: the National Institute on Alcoholism and Alcohol Abuse and the National Institute on Drug Abuse. IOM committee members considered calling for a new National Academy on Pain, but ultimately decided that economic and other restrictions would preclude it at this time.)
Although prescribing of opioids has almost doubled — going from 3.2% of the population in 1988-94 to 5.7% in 2005-08 — it’s not clear that this is out of line with the rise in pain in the population or that the drugs are going to the right people.
During the press conference on Wednesday, pain patient and journalist Melanie Thernstrom, an author of the IOM report, said that committee members had received more than 2,000 comments on its website from pain patients and doctors. “It’s extraordinary how many patients describe themselves as feeling like collateral damage in the war on drugs because of extraordinarily burdensome [requirements to get opioid medications],” she said.
Thernstrom went on to describe cases in which patients who had been on a stable and effective low dose of medication for years were suddenly cut off by their doctors for no apparent reason. She also spoke of cases in which the required monthly doctor visits caused patients to take time off work and travel hours to see a doctor who would prescribe.
“Many pain patients, in fact, are paying the price for a policy not designed for their benefit,” she said, adding that doctors said they prescribed less than they thought was appropriate because of fear that law enforcement was “looking over their shoulder.”
In a passage addressing the question of painkiller misuse, the report notes in italics for emphasis that “the majority of people with pain use their prescription drugs properly, are not a source of misuse, and should not be stigmatized or denied access because of the misdeeds or carelessness of others.”
“Ironically, while many people with pain have difficulty obtaining opioid medications, nonmedical users appear to obtain them far too easily,” the report says.
But the barriers to appropriate care go beyond the issue of painkiller misuse. There are only about 3,000 to 4,000 pain specialists in the entire U.S., which means that primary-care physicians, whose numbers are also dwindling and who are not educated specifically about pain, are left to treat most pain with little specific guidance about effective care. In medical school, students receive only a few hours at most of education on pain treatment.
Meanwhile public and medical misperceptions are widespread about the nature of pain, its causes and the way it affects individual patients. Misinformation is fueled by the fact that comprehensive research is lacking, even on basic questions like how many people suffer from disabling chronic pain and how well existing drugs like opioids treat long-term pain.
Gaps in insurance coverage exacerbate many patients’ problems: health-care plans may not cover pain-management consultations or certain therapies. They may sometimes also offer perverse incentives in pain treatment, Pizzo says, describing how a plan might refuse coverage for physical therapy while covering an invasive surgical procedure, which can lead to unnecessary expenses and care.
The IOM report specifically asks the National Institutes of Health to develop a lead agency to focus on fighting pain and directs the Department of Health and Human Services to develop a major initiative against pain, involving both public and private organizations, by the end of 2012. In response to a question about how the needed changes will actually take place, Pizzo said that “will ultimately reside in accountability at many levels.”
“With tobacco and smoking, what happened is a mobilization of all the important stakeholders,” said committee vice-chair Noreen Clark of the University of Michigan. The authors called on patient advocates to get involved and to “be aware of their strength and the important role they can play in bringing about cultural transformation.”
Added Thernstrom: “The most important message to get out is the concept of pain itself as a disease. The majority of primary care physicians do not agree with this even though there is overwhelming research in both humans and animals [showing that] pain causes damage to the nervous system. It’s dangerous not to treat pain.”