High Wire is Maia Szalavitz's reported opinion column on drugs and drug policy.
After tens of thousands of pain patients were forced to reduce their opioid dosages—some cut off entirely, with little warning—the federal government has finally realized that sharp cuts in prescribing are actually causing some of the harms they intended to prevent. This year, three key federal agencies issued stark warnings about suicide and overdose risk associated with these practices.
But patients, doctors, and advocates report that dose cutbacks are continuing—and a new survey shows that physicians remain hesitant to help these patients. Without changes in law enforcement policy, both patients and physicians will continue to be harmed.
In April, the Food and Drug Administration released a warning admitting that rapid opioid cessation had led to and can cause “uncontrolled pain, psychological distress, and suicide,” telling doctors to stop doing it.
That same month, the Centers for Disease Control and Prevention updated its guidelines with a similar message: Not all pain patients should have their opioids reduced or eliminated; some will continue to function best on medication, even at high doses. In October, the Department of Health and Human Services added to the chorus with a tapering guide that urges physicians to avoid rapid tapers and to consider the needs of individual patients.
Unfortunately, patients themselves report that little has changed. Rapid tapers and apparently-related suicides are still occurring, desperate victims crying out for help on social media [warning: graphic image]. Physicians are either refusing these patients or insisting they take lower doses.
A survey of 500 primary care physicians by Quest Diagnostics conducted this summer—after the FDA and CDC announcements—and released in October found that 81 percent are reluctant to care for chronic pain patients who take opioids and 83 percent say that the pressure to reduce prescribing has made pain treatment “considerably harder.”
Kate Nicholson, a pain patient, civil rights attorney, and advocate based in Denver, Colorado, said she receives around five to seven unsolicited emails a day from people who are affected by the push to cut opioid prescriptions. Some have lost family members to suicide; some are watching their loved ones suffer increased pain and disability from a forced, rapid taper. Others are concerned doctors or pain patients themselves, seeking help.
Nicholson said of the Quest survey, “You can see if you drill down into these numbers that physicians are struggling to treat pain. Eighty-three percent say it's considerably harder. They don't know what to do with people.” She added that she hasn't seen much evidence that the efforts from the FDA, CDC, and HHS have led to real differences for patients.
Patrice Harris, a psychiatrist who serves as president of the American Medical Association and chair of its opioid task force said, “We are still hearing some of these concerns as well,” noting that her organization is continuing to fight against rigid dose limits and other policies set by insurers, pharmacies, and states that don't allow doctors to individualize care and therefore harm patients.
“Being a pain doctor myself, I think it's a travesty,” said Jeff Gudin, a senior medical advisor for Quest Diagnostics who worked on the survey and clinical associate professor of anesthesiology at Rutgers New Jersey Medical School. “It’s a bad time to be a pain patient in our history of medicine,” he said, explaining that the backlash against opioids has ignored the fact that “science hasn’t given us any other medicines that are truly effective for severe levels of pain.”
The Quest survey also found that 72 percent of doctors “worry that chronic pain patients will turn to illicit drugs” and that while the crackdown might reduce prescription opioid deaths, “the trade-off is a greater number of patients whose pain is not properly managed.”
While Gudin agreed that excessive and inappropriate prescribing—such as giving a month’s supply of strong opioids after wisdom teeth surgery—did need to be reined in, he said the pendulum has now swung too far in the opposite direction. (Gudin has consulted in the past for pharmaceutical companies that manufacture opioids).
Pain patient and advocate Lelena Peacock, who offers emotional support to struggling patients on social media, continues to hear heartbreaking stories daily. Just last week, she had to fight for pain care for her mother who has dementia and was in intensive care. She's heard from several relatives of people who have died by suicide in the past few months alone. Cries of distress are ubiquitous in her Twitter feed and direct messages.
“What I’m hearing is that people are still being tapered,” Peacock said, “And what I'm hearing is that doctor's offices, hospitals, and insurers are setting these things as policy.”
Indeed, many large medical organizations, insurers, and state legislatures are still acting as though the now-outdated CDC guidelines are mandates to be applied to all patients. For example, Kaiser Permanente in Spokane, Washington, in October sent patients a notice that they wanted to reduce all opioid doses to below 50 morphine equivalents (MME, a standard measure that allows comparison of different medications). The 2016 CDC guideline suggested not going over 90 MME, but its April clarification emphasizes this doesn't mean that all patients need to be tapered.
And some insurers are now actually paying doctors not to prescribe opioids: Blue Cross Blue Shield of Michigan increases the amount it will pay for specific surgeries by 35 percent if surgeons only prescribe a minimal amount of opioids afterwards. This could yield thousands of dollars per procedure for the doctors performing them. For example, with a complex gastric sleeve surgery for obesity, which can pay as much as $49,900 to the doctor, the additional payment would be as high as $17,465. This obviously provides an enormous incentive for doctors to skimp on medication, regardless of the amount of pain their patient reports.
Underlying all these efforts and driving their continuation is a fundamental legal problem. While states are supposed to be in charge of regulating medicine, when it comes to controlled substances, the federal Drug Enforcement Administration makes the rules.
According to the law, prescribing these drugs is only legal “in the usual course of professional practice” and “for a legitimate medical purpose.” Since those terms are poorly defined—and given the current desire to cut the medical opioid supply and change the way the drugs are used—doctors are running scared.
When the CDC guidelines were initially announced in 2016, they were widely embraced as a way for doctors to demonstrate their compliance with the law. And as the DEA intensified its prosecution of physicians who prescribed high doses, more and more doctors began either forcing patients to taper their meds to be well under the guidelines' top dose or simply refusing to prescribe at all.
In order to be prosecuted as a drug dealer, physicians don’t have to commit obvious crimes like selling prescriptions to people without medical problems or trading drugs for sex—the DEA merely has to prove that the prescribing wasn’t “professional practice” and didn’t have a “legitimate medical purpose."
That vagueness terrifies doctors, even when they have patients who they know are benefiting from doses of opioids outside the CDC guidelines. “It opens people up to a heck of a lot more uncertainty and a heck of a lot more fear," Nicholson said. "Even if they're not themselves being investigated or prosecuted, there's going to be more of a chilling effect because there's no certainty there.”
The result is a generation of pain patients who were—in some cases, wrongly—prescribed large amounts of opioids with little thought for individual differences and are now being made to give up the drugs, again, with little concern for their actual needs.
The actions taken by the CDC, FDA, and HHS are all steps in the right direction—but unless we get the DEA out of the business of determining what prescribing practices are “legitimate,” we will never have appropriate treatment for pain.
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This article originally appeared on VICE US.