Jessica Layman estimates she has called more than 150 doctors in the past few years in her search for someone to prescribe opioids for her chronic pain.
鈥淎 lot of them are straight-up insulting,鈥 said the 40-year-old, who lives in Dallas. 鈥淭hey say things like 鈥榃e don鈥檛 treat drug addicts.鈥欌
Layman has tried a host of non-opioid treatments to help with the intense daily pain caused by double scoliosis, a collapsed spinal disc, and facet joint arthritis. But she said nothing worked as well as methadone, an opioid she has taken since 2013.
The latest phone calls came late last year, after her previous doctor shuttered his pain medicine practice, she said. She hopes her current doctor won’t do the same. 鈥淚f something should happen to him, there’s nowhere for me to go,鈥 she said.
Layman is one of the millions in the U.S. living with chronic pain. Many have struggled to get opioid prescriptions written and filled since from the Centers for Disease Control and Prevention inspired laws cracking down on doctor and pharmacy practices. The CDC recently updated those recommendations to try to ease their impact, but doctors, patients, researchers, and advocates say the damage is done.
鈥淲e had a massive opioid problem that needed to be rectified,鈥 said Antonio Ciaccia, president of , a consulting firm that analyzes prescription drug pricing. 鈥淏ut the federal crackdowns and guidelines have created collateral damage: patients left high and dry.鈥
Born of an effort to fight the nation鈥檚 overdose crisis, the guidance led to legal restrictions on doctors鈥 ability to prescribe painkillers. The recommendations left many patients grappling with the mental and physical health consequences of rapid dose tapering or abruptly stopping medication they鈥檇 been taking for years, which carries risks of withdrawal, depression, anxiety, and even suicide.
In November, the agency released , encouraging physicians to focus on the individual needs of patients. While the guidelines still say opioids should not be the go-to option for pain, they ease recommendations about dose limits, which were widely viewed as hard rules in the CDC鈥檚 2016 guidance. The new standards also warn doctors about risks associated with rapid dose changes after long-term use.
But some doctors worry the new recommendations will take a long time to make a meaningful change 鈥 and may be too little, too late for some patients. The reasons include a lack of coordination from other federal agencies, fear of legal consequences among providers, state policymakers hesitant to tweak laws, and widespread stigma surrounding opioid medication.
The 2016 guidelines for prescribing opioids to people with chronic pain filled a vacuum for state officials searching for solutions to the overdose crisis, said , an assistant professor of medicine at the University of Michigan Medical School.
The limiting how providers prescribe or dispense those medications, she said, had an effect: a decline in opioid prescriptions even as overdoses continued to climb.
The first CDC guidelines 鈥減ut everybody on notice,鈥欌 said , chair of the American Medical Association鈥檚 Substance Use and Pain Care Task Force. Physicians reduced the number of opioid pills they prescribe after surgeries, he said. The 2022 revisions are 鈥渁 dramatic change,鈥 he said.
The human toll of the opioid crisis is hard to overstate. Opioid overdose deaths have in the past two decades, early in the covid-19 pandemic. The CDC says illicit fentanyl has fueled a recent surge in overdose deaths.
Taking into account the perspective of chronic pain patients, the latest recommendations try to scale back some of the harms to people who had benefited from opioids but were cut off, said , director of the Penn Medicine Center for Addiction Medicine and Policy.
鈥淚 hope we just continue to spread caution without spreading too much fear about never using opioids,鈥 said Perrone, who helped craft the CDC鈥檚 latest recommendations.
Christopher Jones, director of the CDC鈥檚 National Center for Injury Prevention and Control, said the updated recommendations are not a regulatory mandate but only a tool to help doctors 鈥渕ake informed, person-centered decisions related to pain care.鈥
question whether opioids are the most effective way to treat chronic pain in the long term. But drug tapering is associated with deaths from overdose and suicide, with risk increasing the longer a person had been taking opioids, according to research by , a professor of medicine at the University of Alabama-Birmingham.
He said the new CDC guidance reflects 鈥渁n extraordinary amount of input鈥 from chronic pain patients and their doctors but doubts it will have much of an impact if the FDA and the Drug Enforcement Administration don鈥檛 change how they enforce federal laws.
The FDA approves new drugs and their reformulations, but the guidance it provides for how to start or wean patients could urge clinicians to do so with caution, Kertesz said. The DEA, which investigates physicians suspected of illegally prescribing opioids, declined to comment.
The DEA鈥檚 pursuit of doctors put Danny Elliott of Warner Robins, Georgia, in a horrible predicament, said his brother, Jim.
In 1991, Danny, a pharmaceutical company rep, suffered an electric shock. He took pain medicine for the resulting brain injury for years until his doctor faced federal charges of illegally dispensing prescription opioids, Jim said.
Danny turned to doctors out of state 鈥 first in Texas and then in California. But Danny鈥檚 latest physician had his license suspended by the DEA last year, and he couldn鈥檛 find a new doctor who would prescribe those medications, Jim said.
Danny, 61, and his wife, Gretchen, 59, died by suicide in November. 鈥淚鈥檓 really frustrated and angry about pain patients being cut off,鈥 Jim said.
Danny against forced drug tapering before he died. Chronic pain patients who spoke with KHN pointed to his plight in calling for more access to opioid medications.
Even for people with prescriptions, it鈥檚 not always easy to get the drugs they need.
and have settled lawsuits for billions of dollars over their alleged role in the opioid crisis. Some pharmacies have seen their opioid allocations limited or cut off, noted Ciaccia, with 3 Axis Advisors.
Rheba Smith, 61, of Atlanta, said that in December her pharmacy stopped filling her prescriptions for Percocet and MS Contin. She had taken those opioid medications for years to manage chronic pain after her iliac nerve was mistakenly cut during surgery, she said.
Smith said she visited nearly two dozen pharmacies in early January but could not find one that would fill her prescriptions. She finally found a local mail-order pharmacy that filled a one-month supply of Percocet. But now that drug and MS Contin are not available, the pharmacy told her.
鈥淚t has been a horrible three months. I have been in terrible pain,鈥 Smith said.
Many patients fear a future of constant pain. Layman thinks about the lengths she鈥檇 go to in order to get medication.
鈥淲ould you be willing to buy drugs off the street? Would you be willing to go to an addiction clinic and try to get pain treatment there? What are you willing to do to stay alive?鈥 she said. 鈥淭hat is what it comes down to.鈥
