Andrea Chandler went to her local pharmacy a few weeks ago hoping to get the opiates she needed to manage her chronic pain. Because of new regulations, however, she couldn’t get her medication and eventually went into withdrawal. She spent the next several days experiencing “tremors, nausea, drooling, and restless leg syndrome along with moderately uncontrolled pain,” she says. For Chandler, “moderately uncontrolled pain” means that she can’t get out of bed except for trips to the bathroom. “On bad days it’s nearly impossible to care for myself.”
Chandler is a 40-year-old veteran and farmer living in central Virginia. She’s been managing chronic pain for the past 15 years due to a variety of health problems, including a rotator-cuff injury from her time in the Navy, and osteoarthritis in her hands. She also has fibromyalgia, a “fancy ways of saying my muscles and tendons hurt a lot and no one knows why,” she says.
For Chandler, managing pain involves “an ungodly regimen of drugs, mild exercise, meditation, and profanity.” Her last resort is hydrocodone, the most commonly prescribed opiate in the US, according to the Drug Enforcement Agency (DEA). She takes it in the form of Vicodin.
However, in October 2014, the DEA changed the classification of Vicodin and other hydrocodone products from Schedule III to Schedule II drugs. This means that prescriptions can no longer be called in; patients have to physically go to a pharmacy to get it filled. Prescriptions also can’t be refilled; patients have to get a new one each month. And pharmacies can’t fill partial prescriptions, or transfer medication from one pharmacy to another.
As a result, when Chandler’s pharmacy ran out of Vicodin, she couldn’t get the medication. She could have shopped around to other pharmacies, but Virginia recently began tracking opioid patients more aggressively. Chandler worried she would be flagged and investigated, making it even harder to get prescriptions in the long run. So, even though she had a legal prescription, she had to go through withdrawal. She spent a week incapacitated.
Chandler is hardly alone. In 2012, there were over 135 million prescriptions for opiates. Doctors have argued that opiates are greatly overprescribed; in March the US Centers for Disease Control issued guidelines recommending stricter standards for prescribing them. Those standards are meant to be recommendations—but they inevitably will influence state legislators and doctors. Many people like Chandler may eventually become unable to access their medication.
An online survey of 3,000 chronic pain patients conducted in 2015 by the National Fibromyalgia and Chronic Pain Association found that almost two-thirds reported being unable to access hydrocodone prescriptions, even though they had been using the medication for years. Even when patients could access the medication to some degree, it was more expensive because of travel costs as they had to travel to and from stores, and lost work days due to pain when they were unable to get the medicine they needed. More than a quarter of respondents said that they experienced suicidal thoughts due to their inability to control their pain.
Opiate restrictions have been put in place because of concerns about overdoses and deaths. Sales of opiates have quadrupled since 1999, and overdose deaths have gone up by the same amount. In 2014, 14,000 people died from prescription opioid overdoses.
Lynn Webster, former president of the American Academy of Pain Medicine, and the author of The Painful Truth: What Chronic Pain Is Really Like and Why It Matters to Each of Us, agreed that opioids are overprescribed in some cases. Emergency rooms and surgeons often write large prescriptions for opiates to avoid callbacks. Webster says that he’s heard some anecdotal evidence that surgeons have increased opioid prescriptions because of the new guidelines, in order to prevent return office visits.
The restrictions also haven’t yet made a dint in the number of US overdoses; there is some concern that they may have increased them, by pushing opiate abusers who could not access prescription medication to heroin. Meanwhile, Webster said, for chronic pain patients, physicians afraid of sanctions or Drug Enforcement Agency (DEA) investigations have begun to refuse to prescribe, leaving patients untreated and in great distress.
The problem, according to Webster, is confusion over and a general indifference to the struggles of chronic pain sufferers. “Our health care system doesn’t allow us to use many alternatives to treat pain,” Webster told Quartz. “And so the bottom line to all of this is, the person in moderate to severe pain is being abandoned by the healthcare system, by regulators, by politicians, and by the medical profession.”
Webster pointed out that marijuana has promising analgesic properties, but that DEA restrictions make it difficult to study. And of course, medical marijuana is still outlawed in most of the country, even though states that legalize it have had fewer painkiller overdose deaths. Webster also said other treatment options, including multi-disciplinary treatment clinics, cognitive behavioral pain therapists, and rehab specialists, have seen some success. But these methods remain expensive, and insurance is often reluctant to cover them.
The healthcare and political systems are very, very concerned with abuse of opiates, and with placing restrictions on addicts. But there is much less concern for those with chronic pain. Many of these people were originally told by doctors and insurers that opiates were their only chance for relief, only to find that access has become more and more restricted.
“We generally do a poor job of actually listening to people in pain and taking them seriously,” says Daniel Goldberg, a professor of bioethics and interdisciplinary studies at East Carolina University. “The history of pain is nothing if not a history of selective silence. Elaine Scarry famously wrote that intense pain can actually destroy language, can destroy our ability to communicate… There is literally nothing more important in helping people in pain than actually listening to them. And the evidence suggests that in paradigms of both policy and clinical practice we remain surprisingly bad at this.”
Attempting to address the real problem of opiate abuse without taking into account the needs of the chronically in pain will make the lives of people like Andrea Chandler more miserable. “In my ideal world,” says Chandler, “low-level opiates like codeine, hydrocodone, and oxycodone would be returned to Schedule III and comprehensive policies adopted to make marijuana legal at the federal level, mental health care including treatment for addiction freely and widely available, and programs to restore social safety nets and reduce poverty.”
Unfortunately, the current government approach is more about the War on Drugs then sensible reforms. And meanwhile, those with chronic pain are left to suffer in relative silence.