The pump under her skin provides fentanyl directly into her spinal cord 24 hours a day. The medication gives marginal relief to Kate Lester, 68, who suffers from chronic pain.
“I have been dealing with chronic pain most of my life, said Lester, of Fort Thomas, Kentucky. She had a tumor on her thyroid as a child and was given too much radiation, leaving her body unable to regulate some types of pain, she said. Since then, she has suffered severe injuries to her back, neck and shoulder, exacerbating the problem.
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Lester is among 1 in 5 Americans who suffer from chronic pain. She is among an untold number of pain patients who took note in 2016 when the Centers for Disease Control and Prevention set opioid-prescribing guidelines for physicians.
The intent was to offer doctors the best ways to protect people from an over-prescription of pain pills, a practice that had fueled the misuse of opioids and amplified cascading overdose deaths in the United States. In short, the idea was to protect patients.
But the impact wasn’t all positive.
“I remember going to my doctors and apologizing that there is pain and what they were prescribing wasn’t helping,” Lester said. “They knew for many years of experience I was not drug-seeking.”
Now, after a backlash of complaints from pain patients, years of apparent misinterpretation among physicians and, primarily, new evidence from studies that have been done since the 2016 guidelines went into effect, the CDC has drafted an updated proposal. The draft is in a public comment period that ends April 11.
Treatment can’t be one-size-fits-all
It makes clear that doctor-patient communication is essential and emphasizes that there is no one-size-fits-all answer to treating pain.
The draft still recommends physicians only consider opioid prescribing when its benefits outweigh its risks. It still asks them to prescribe the lowest effective dose for new patients. It stresses the need to consider the duration of opioid prescribing, supports alternative treatments and asks doctors to refer patients with opioid use disorder to treatment.
But the new proposal does away with specific milligram recommendations. It avoids citing a length of prescription. It warns of dangers in rapidly tapering or cutting off people’s pain medication.
Addiction specialists see need for change
Dr. Christina Wilder, medical director of University of Cincinnati Health’s Addiction Sciences in Cincinnati, welcomes the proposed changes.
“I think (the original set) was adopted as ‘the rules’ by a lot of physicians, states, medical boards … who then required things such as explanations for any more than a seven-day prescription of medication. These are partly a response to that,” she said.
Dr. Mina “Mike” Kalfas, an addiction specialist at St. Elizabeth Healthcare’s Journey Recovery Center in Northern Kentucky, saw a chill in opioid prescribing after the 2016 guidelines came out. He said the reluctance to prescribe put an unfair burden on pain sufferers.
“The first time around, I think the CDC went overboard. They gave this impression that pain medication is just taboo,” Kalfas said. “It hurt.”
Wilder said that after the 2016 guidelines came out, she saw an uptick in chronic pain patients asking for methadone treatment at the UC opioid treatment program – because their pain medication had been abruptly stopped or they had one negative drug screen.
“Physically they feel terrible,” Wilder said. But some of the patients could not be treated with methadone at the clinic. “Legally for methadone, you can’t admit someone to the clinic unless someone had OUD (opioid use disorder).” That’s not what they had. They were experiencing withdrawal because of their physical dependence on the medication, not addiction.
Chronic pain sufferer worried her doctors would ‘get into trouble’
Over the years, Lester has been prescribed an array of opioids: OxyContin, morphine, hydromorphone among them. She always feared she’d become addicted but never experienced the disorder.
She tried to self-regulate, she said. If a pill could be cut in half, she’d cut it in half and refrain from taking the dose as it was prescribed, holding out as long as she could tolerate her pain.
She tried nonopioid treatments.
“I have tried just about any alternative to treating my pain, especially since 2016,” Lester said, listing physical therapy, traction and acupuncture among other regimens.
She worried about her physicians, who continued to treat her.
“I didn’t want my doctors to get in trouble,” Lester said, “but I didn’t want this pain to continue.”
Legitimate pain sufferers were turned to the street
Kalfas said some primary care practices took on new patients who’d had a history of pain after the 2016 guidelines came out – but refused to treat them for pain for fear of being criminally charged for prescribing opioids.
“They have turned legitimate patients to the street,” he said. Kalfas said some doctors fear legal consequences for prescribing pain medication to people who need it. “You can’t blame them.”
Lester said she sees value in prescribing regulation, but she’s also witnessed the tragedy that can happen when someone with pain is stripped of pain medication.
A woman she knew suffered from chronic pain after she was severely injured in a car crash. The woman was prescribed OxyContin, Lester said, but after a time the prescriptions ended, and she replaced them with drugs from the street.
“She became addicted. She lost her house, her car, her job,” Lester said. “She died from overdose.”
Lester said she knows another woman, in her 80s, who was unable to get her pain medication refilled one weekend. “Her doctor was out of town,” Lester said. Other physicians would not approve a refill. Lester went to the woman’s home to try to soothe her, helping her with a hot bath and a massage and giving her a touch of Grey Goose vodka.
“It was all I could do,” Lester said. “I would love to have been able to give her some of my pain medications, but that’s against the law.”
Prescribing guidance welcomed
The addiction specialists agree that the CDC did the right thing in creating the prescribing advice in 2016.
“Prescribing needed to be cleaned up,” Kalfas said. “We need some recommendations, a skeleton of something to follow to keep it objective.”
“The last set of CDC guidelines led to a change in prescribing that has morphed into something it wasn’t intended to be,” he said. “And this new set of guidelines moves the pendulum back to the middle a little bit.”
Wilder was glad to see that the CDC still asks clinicians to find treatment for people with opioid use disorder and suggests they get certified to prescribe buprenorphine, an opioid use disorder medication.
Lester said she isn’t sure whether the new guidelines would make any difference for her. If not, she said, she hopes others will get relief.
“When people you love become addicted and die, she said, “it gives you a whole different understanding of pain and pain management.”
