The Pump Handle

Chronic pain patients caught in the middle of growing opioid abuse problem

by Kim Krisberg

This is the first in a series exploring the intersections between effectively caring for people living with chronic pain and the rise in unintentional poisoning deaths due to prescription painkillers. The series will explore the science and policy of balancing the need for treatment as well as the need to prevent abuse and diversion. This week’s story provides a look at the field of pain medicine and the patients it cares for; next week’s story will look at the educational and risk reduction approaches physicians are employing to address opioid addiction and overdose.

It took six years of going from doctor to doctor to doctor for Penney Cowan to finally receive a diagnosis for her chronic pain: fibromyalgia. Doctors had told her she’d just have to learn to live with the pain — a condition that some days made it hard to lift a cup of coffee. So when she decided to join the pain program at Ohio’s Cleveland Clinic, she didn’t have high hopes. She says she expected the effort to fail.

“Chronic pain never really goes away,” Cowan told me. “What’s difficult for people to understand is that it doesn’t mean you’ll have the same intense pain 24/7. You have good days and pain days. I felt so isolated and alone for those six years. People would say ‘you look so good’ and I would say ‘you should be inside my body.’ And it’s not just the pain — it’s the fear of pain that’s awful too.”

Fortunately, the Cleveland Clinic did help Cowan develop a set of skills, such as biofeedback training, to help her manage the pain. Eager to sustain the methods she’d learned and share them with those in need, Cowan began seeking out others in her Pennsylvania community also living with chronic pain. The effort eventually led her in 1980 to found the American Chronic Pain Association, which today offers peer support and education for people living with pain as well as for health care providers.

“I wanted to let people know they’re not alone and that there’s a way that they can work on helping themselves better manage their pain,” said Cowan, who’s the association’s executive director. “We don’t replace proper medical treatment…we share with them coping skills, we want to empower them to help themselves and become part of the treatment team. When it comes to living with pain, you have to be an active participant.”

Managing chronic pain — like managing most chronic health conditions — often requires a multipronged approach and prescription drugs can be an effective part of the treatment puzzle. However, one of the most helpful categories of drugs — opioids — is now at the center of a growing diversion, abuse and overdose problem in the United States. The misuse and poisoning rate now associated with opioids is indeed alarming; but in the backlash and frenzy to find a solution, patients are getting caught in the middle. Cowan tells me that she’s heard from chronic pain patients who say their doctors are no longer willing to prescribe opioids as part of their treatments. Others say their doctors will still provide a prescription, but their pharmacists won’t fill it any more.

“Each person needs to be treated as an individual,” Cowan said. “Right now, we’re not seeing (people living with chronic pain) as trying to regain control of their lives, they’re just seen as people seeking out drugs. That’s not fair. No one wants to be in that much pain.”

An emerging science

About 100 million U.S. adults are affected by chronic pain conditions — a problem that comes with a cost of between $560 and $635 billion annually in medical care and lost productivity, according to a 2011 Institute of Medicine report, “Relieving Pain in America: A Blueprint for Transforming Prevention, Care, Education and Research.” The report authors write:

Pain’s occurrence, severity, duration, response to treatment and disabling consequences vary from person to person because pain, like other severe chronic conditions, is much more than a biological phenomenon and has profound emotional and cognitive effects. Pain can be mild and easily handled with over-the-counter medications; it can be acute and recede with treatment; it can be recurrent over months or years; or it can be chronic and debilitating, requiring almost constant attention and accommodation.

The report goes on to say that “many shortfalls in pain assessment and treatment persist despite humanity’s familiarity with pain throughout history,” with much of those shortfalls related to gaps in policy, treatment, attitudes, education and research. When it comes to the science of pain management, “it’s like a toddler, it’s just walking,” says Ylisabyth Bradshaw, an assistant public health professor at Tufts University and academic director of its Program in Pain Research, Education and Policy. Bradshaw said that while we know a lot about how to treat pain in an operative setting and at the end of life, chronic pain is still somewhat mysterious to researchers.

“We clearly know how to deal with both those types of pain better than we know how to control chronic pain,” she told me. “That type of pain control has many more challenges. We can do a lot, but we can’t predictably control chronic pain as well as we’d like.”

For millennia, opioids have been used as an effective treatment for pain. Still, there’s a great deal of difference in how individuals respond to different medications — “my biochemistry is different from your biochemistry,” Bradshaw said. For comparison, she said, there isn’t one type of breast cancer and therefore, people need different types of treatment. The same is true for pain, she said: “A drug that may help me could be no better than a placebo for you.”

“We’re beginning to understand this better and we predict that within the next decade or so we’ll be able to type someone’s biochemistry,” Bradshaw said. “But right now, it’s closer to trial and error.”

Bradshaw said she doesn’t think the health care community was prepared for the negative consequences that followed as more physicians embraced the use of opioids to treat chronic, persistent pain in the 1990s.

“As physicians, we strongly guard our ability to practice for our patients’ benefit,” she said. “We don’t want the pendulum to swing too far back so that we under treat pain, but we want to be careful to help prevent overdoses, misuse and abuse. Clearly, opioids are a real hazard to many people, so figuring out how to reduce the risk is our big challenge now.”

‘Patients are getting caught in the middle’

The increase in opioid prescriptions has unfortunately coincided with an increase in drug-related abuse and unintentional poisoning. According to the Centers for Disease Control and Prevention, populations that are particularly vulnerable to prescription drug overdose include those who have multiple controlled substance prescriptions from multiple providers; those who take high daily dosages; and people living with mental illness and who have a history of substance abuse. More than half of those who abuse prescription painkillers say they got the drugs free from a friend or family member.

CDC reports that the drug overdose death rate in the U.S. — the death rate per 100,000 population — has more than tripled since 1990 and has never been higher. The public health agency reports that about three out of four prescription drug overdoses are caused by opioid pain relievers and that the “unprecedented rise in overdose deaths in the U.S. parallels a 300 percent increase since 1999 in the sale of these strong painkillers.” Today, opioid pain relievers are involved in more overdose deaths than cocaine and heroin combined.

The situation is one many doctors feel ill-prepared to deal with, and an easy way to avoid the controversy is to simply stop prescribing opioids. This non-prescribing approach can be devastating for patients, said Edward Michna, an anesthesiologist at Brigham and Women’s Hospital in Boston and an assistant professor at Harvard Medical School. For example, Michna said he recently heard from a patient who is living with severe rheumatoid arthritis and who had an opioid prescription to treat pain. When her physician recently took a leave of absence, the rest of the medical practice refused to refill her prescription.

“Right now, I have patients who complain that they go to the pharmacy and they feel that people are making judgments against them,” said Michna, who also serves on the Board of Directors for the American Pain Society. “I think certainly in the primary care community, which currently prescribes over 70 percent of opioids, there’s a growing fear because of the obvious misuse and abuse. Access to care is being restricted, especially in under-served areas. Patients are getting caught in the middle.”

Michna told me that the science of pain management has a long way to go, noting that even though pain is the most common reason people seek out a doctor’s help, the amount of resources spent on understanding pain and its treatment is quite small. (According to the American Cancer Society, less than 1 percent of the National Institutes of Health budget is spent on palliative care research.) Adding to the issue, Michna said pain management as a specialty is still in its infancy and because there’s no “real definition” of what makes for a pain physician, the “practice is all over the place.”

“You can say you’re boarded in pain management, but other that that it’s like the wild, wild West,” Michna said.

Michna noted that there are no long-term studies on long-term opioid use to treat chronic pain; he added that such research is sorely needed and will likely have to be funded at the federal level.

“Certainly, opioids are a major part of the treatment of pain, especially acute pain, but the question is whether they are effective long term, and we don’t really know in what subpopulations of the chronic pain population they’re most appropriate (for long-term use),” he said.

In fact, it’s only been in recent years that “we have a general agreement that pain is a disease itself,” said Lynn Webster, who’s been practicing pain management for 30 years and is president-elect of the American Academy of Pain Medicine. Webster told me that as a result, there’s a fragmented approach to the treatment of pain, and physicians don’t have one solid set of standards to guide their approach.

Webster cautioned that what’s being lost in the overall dialogue on the rise in unintentional opioid poisonings are the equally tragic consequences of not treating chronic pain, noting that as high as half of those living with chronic pain have suicide ideation. He said there’s no question that patients are having a more difficult time accessing pain treatment as well as finding a doctor willing to treat their pain.

“There are consequences for not treating pain as there are consequences when we prescribe opioids to somebody at risk for addiction,” Webster said. “The problem of prescription drug abuse and the problem of treating pain will require a broad coalition of people — it will require the regulatory community, medical community and legal community to jointly come together to solve this problem. No one group will be able to solve this problem by themselves.”

For more on the science of pain management, visit www.ampainsoc.org or www.painmed.org.

Kim Krisberg is a freelance public health writer living in Austin, Texas, and has been writing about public health for the last decade.