Jessica Layman estimates that over the past few years she has called more than 150 doctors looking for someone to prescribe opioids for her chronic pain.
“Many of them are outright offensive,” said the 40-year-old Dallas resident. “They say things like, ‘We don’t treat drug addicts.
Layman has tried many non-opioid therapies to relieve the intense daily pain caused by double scoliosis, spinal disc collapse, and facet joint arthritis. But she said nothing worked as well as methadone, an opioid she’s been taking since 2013.
The last phone calls came late last year, after her previous doctor closed his pain management practice, she said. She hopes her current doctor doesn’t do the same. “If something happens to him, I have nowhere to go,” she said.
A layperson is one of the millions in the United States living with chronic pain. Many have struggled to get opioid prescriptions written and filled since Guide 2016 from the Centers for Disease Control and Prevention inspired laws against the practices of doctors and pharmacies. The CDC recently updated these guidelines to try to ease their impact, but doctors, patients, researchers and advocates say the damage is already done.
“We had a serious problem with opioids that needed to be addressed,” said Antonio Ciaccia, President 3 axis advisors, a consulting firm that analyzes prescription drug prices. “But federal crackdowns and guidelines have created collateral damage: patients are left with nothing.”
Born out of efforts to combat the country’s overdose crisis, the guidelines have resulted in legal restrictions on doctors’ ability to prescribe painkillers. The recommendations have led many patients to face the mental and physical health consequences of rapidly reducing or abruptly discontinuing medications they have been taking for years, with the risk of withdrawal, depression, anxiety, and even suicide.
In November, the agency published new rulesencouraging physicians to focus on the individual needs of patients. While the guidelines continue to say that opioids should not be used for pain, they soften recommendations on dose limits that were widely seen as hard and fast rules in the 2016 CDC guidelines. The new standards also warn physicians of the risks associated with rapid dose changes after long-term use.
But some doctors fear it will take a long time to make meaningful changes to the new guidelines, and for some patients it may be too little or too late. Reasons include a lack of coordination from other federal agencies, fear of legal repercussions among service providers, the reluctance of state politicians to change laws, and widespread stigma associated with opioids.
A 2016 guide to prescribing opioids for people with chronic pain filled a vacuum for government officials seeking solutions to the overdose crisis, the report said. Dr. Pooja Lagisettiassistant professor of medicine at the University of Michigan School of Medicine.
V dozens of state laws Restricting how health care workers prescribe or distribute these drugs has had an effect, she said: the number of opioids prescribed has dropped, even as the number of overdoses has continued to rise.
The first recommendations from the Centers for Disease Control and Prevention (CDC) “warned everyone.” Dr. Bobby Mukkamala, Chairman of the Task Force on Substance Use and Pain Relief of the American Medical Association. Doctors have reduced the number of opioid pills they prescribe after surgeries, he said. The 2022 amendments are a “dramatic change,” he said.
The human cost of the opioid crisis cannot be overestimated. Death from opioid overdose growing steadily in the US in the last two decades, with spike at the beginning of the covid-19 pandemic. The CDC reports that illegal fentanyl has caused a recent spike in overdose deaths.
Taking into account the perspective of patients with chronic pain, the latest recommendations attempt to reduce some of the harm for people who have benefited from opioids but have been cut off from them. Dr. Jean-Marie Perronedirector of the Pennsylvania Medical Center for Addictions and Politics.
“I hope we just continue to be careful not to spread too many concerns about never using opioids,” said Perrone, who helped develop the latest CDC guidelines.
Christopher Jones, director of the CDC’s National Center for Injury Prevention and Control, said the updated guidelines are not a regulatory mandate, but merely a tool to help clinicians “make informed, person-centered pain management decisions.”
several studies the question is whether opioids are the most effective way to treat chronic pain in the long term. But lowering the dose of the drug is associated with overdose deaths and suicide, with the risk increasing the longer a person takes opioids, according to a study by Dr. Stefan Kertészprofessor of medicine at the University of Alabama-Birmingham.
He said the CDC’s new guidance reflects “an extraordinary amount of information” from chronic pain patients and their physicians, but doubts it will have much of an impact unless the FDA and the Drug Enforcement Administration change how they enforce federal laws.
The FDA approves new drugs and their new formulations, Kertész said, but the advice it makes on how to start or stop patients may encourage clinicians to do so with caution, Kertész said. The DEA, which is investigating doctors suspected of illegally prescribing opioids, declined to comment.
DEA harassment of doctors has put Warner Robins, Georgia’s Danny Elliott in a terrible predicament, his brother Jim said.
In 1991, Danny, a representative of a pharmaceutical company, was electrocuted. Jim said he took pain medication for years for a brain injury until his doctor faced federal charges for illegally dispensing prescription opioids.
Danny went to doctors out of state, first in Texas and then in California. But Danny’s last doctor had his license suspended by the DEA last year and he couldn’t find a new doctor to prescribe the drugs, Jim said.
Danny, 61, and his wife Gretchen, 59, committed suicide in November. “I am very frustrated and angry at pain patients being turned off,” Jim said.
Danny became a defender against forced cessation of drug use before death. Patients with chronic pain who spoke to KHN pointed to his plight, calling for more access to opioids.
Even for those with a prescription, it is not always easy to get the medicines they need.
Pharmacy chains another wholesale drug dealers settled billions of dollars in lawsuits over their alleged role in the opioid crisis. Some pharmacies have limited or stopped supplies of opioids, notes Chachcha of 3 Axis Advisors.
Reba Smith, 61, from Atlanta, said her pharmacy stopped filling prescriptions for Percocet and MS Contin in December. She said she took these opioids for years to cope with chronic pain after her iliac nerve was mistakenly severed during surgery.
Smith said she visited nearly two dozen pharmacies in early January but couldn’t find one that matched her prescriptions. She eventually found a local mail-order pharmacy that had a month’s supply of Percocet. But now this drug and RS Contin are out of stock, the pharmacy told her.
“It was a terrible three months. I was in terrible pain,” Smith said.
Many patients fear constant pain in the future. Layman thinks about the lengths she’s willing to go to get the cure.
“Would you agree to buy drugs on the street? Would you like to go to a drug treatment clinic and try to get painkillers there? What are you willing to do to stay alive?” She said. “That’s what it all comes down to.”