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.<\/p>\n

\u201cA lot of them are straight-up insulting,\u201d said the 40-year-old, who lives in Dallas. \u201cThey say things like \u2018We don\u2019t treat drug addicts.\u2019\u201d<\/p>\n

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.<\/p>\n

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\u2019t do the same. \u201cIf something should happen to him, there\u2019s nowhere for me to go,\u201d she said.<\/p>\n

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 2016 guidelines<\/a> 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.<\/p>\n

\u201cWe had a massive opioid problem that needed to be rectified,\u201d said Antonio Ciaccia, president of 3 Axis Advisors<\/a>, a consulting firm that analyzes prescription drug pricing. \u201cBut the federal crackdowns and guidelines have created collateral damage: patients left high and dry.\u201d<\/p>\n

Born of an effort to fight the nation\u2019s overdose crisis, the guidance led to legal restrictions on doctors\u2019 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\u2019d been taking for years, which carries risks of withdrawal, depression, anxiety, and even suicide.<\/p>\n

In November, the agency released new guidelines<\/a>, 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\u2019s 2016 guidance. The new standards also warn doctors about risks associated with rapid dose changes after long-term use.<\/p>\n

But some doctors worry the new recommendations will take a long time to make a meaningful change \u2014 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.<\/p>\n

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 Dr. Pooja Lagisetty<\/a>, an assistant professor of medicine at the University of Michigan Medical School.<\/p>\n

The dozens of laws that states passed<\/a> limiting how providers prescribe or dispense those medications, she said, had an effect: a decline in opioid prescriptions even as overdoses continued to climb.<\/p>\n

The first CDC guidelines \u201cput everybody on notice,\u2019\u2019 said Dr. Bobby Mukkamala<\/a>, chair of the American Medical Association\u2019s Substance Use and Pain Care Task Force. Physicians reduced the number of opioid pills they prescribe after surgeries, he said. The 2022 revisions are \u201ca dramatic change,\u201d he said.<\/p>\n

The human toll of the opioid crisis is hard to overstate. Opioid overdose deaths have risen steadily in the U.S.<\/a> in the past two decades, with a spike<\/a> early in the covid-19 pandemic. The CDC says illicit fentanyl has fueled a recent surge in overdose deaths.<\/p>\n

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 Dr. Jeanmarie Perrone<\/a>, director of the Penn Medicine Center for Addiction Medicine and Policy.<\/p>\n

\u201cI hope we just continue to spread caution without spreading too much fear about never using opioids,\u201d said Perrone, who helped craft the CDC\u2019s latest recommendations.<\/p>\n

Christopher Jones, director of the CDC\u2019s National Center for Injury Prevention and Control, said the updated recommendations are not a regulatory mandate but only a tool to help doctors \u201cmake informed, person-centered decisions related to pain care.\u201d<\/p>\n

Multiple studies<\/a> 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 Dr. Stefan Kertesz<\/a>, a professor of medicine at the University of Alabama-Birmingham.<\/p>\n

He said the new CDC guidance reflects \u201can extraordinary amount of input\u201d 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\u2019t change how they enforce federal laws.<\/p>\n

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.<\/p>\n

Smith has experienced pain in her left leg since a nerve was cut during surgery years ago. But in December her pharmacy stopped filling her prescriptions for painkillers.(Andy Miller \/ KHN)<\/span><\/figcaption><\/figure>\n

The DEA\u2019s pursuit of doctors put Danny Elliott of Warner Robins, Georgia, in a horrible predicament, said his brother, Jim.<\/p>\n

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.<\/p>\n

Danny turned to doctors out of state \u2014 first in Texas and then in California. But Danny\u2019s latest physician had his license suspended by the DEA last year, and he couldn\u2019t find a new doctor who would prescribe those medications, Jim said.<\/p>\n

Danny, 61, and his wife, Gretchen, 59, died by suicide in November. \u201cI\u2019m really frustrated and angry about pain patients being cut off,\u201d Jim said.<\/p>\n

Danny became an advocate<\/a> 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.<\/p>\n

Even for people with prescriptions, it\u2019s not always easy to get the drugs they need.<\/p>\n

Pharmacy chains<\/a> and drug wholesalers<\/a> 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.<\/p>\n

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.<\/p>\n

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.<\/p>\n

\u201cIt has been a horrible three months. I have been in terrible pain,\u201d Smith said.<\/p>\n

Many patients fear a future of constant pain. Layman thinks about the lengths she\u2019d go to in order to get medication.<\/p>\n

\u201cWould 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?\u201d she said. \u201cThat is what it comes down to.\u201d<\/p>\n