By Sam Whitehead and Andy Miller/KHN
Jessica Layman estimates that she has called more than 150 doctors in the past few years, looking for someone to prescribe opioids for her chronic pain.
“Many directly insult,” said the 40-year-old woman, who lives in Dallas.
“They say things like, 'We don't treat drug addicts.'
Layman has tried a number of non-opioid treatments to help her with the intense daily pain caused by her double scoliosis, a collapsed spinal disc, and her facet joint arthritis.
But she said nothing worked as well as methadone, an opioid she has taken since 2013.
People like Rheba Smith of Atlanta say they have had trouble getting opioid prescriptions in recent years.
Smith has suffered from chronic pain ever since she mistakenly severed a nerve during surgery.
CDC guidelines in 2016 inspired laws cracking down on opioid prescribing.Andy Miller/KHN
He said the last phone calls were late last year, after his previous doctor closed his pain medicine practice.
He hopes his current doctor doesn't do the same.
“I would have nowhere to go,” she added.
Layman is one of the millions of people in the United States living with chronic pain.
Many have had trouble getting opioid prescriptions—and getting them filled—since 2016 Centers for Disease Control and Prevention (CDC) guidelines inspired laws cracking down on medical and pharmaceutical malpractice.
The CDC recently updated those recommendations to try to lessen their impact, but doctors, patients, researchers and advocates say the damage has already been done.
[The opioid crisis is not just a white problem: deaths among Hispanics have skyrocketed]
“We had a massive problem with opioids that needed to be rectified,” said Antonio Ciaccia, president of 3 Axis Advisors, a consulting firm that tracks prescription drug prices.
“But the crackdown and federal guidelines have created collateral damage — they hurt patients without resources.”
Born out of an effort to combat the national overdose crisis, the guideline led to legal restrictions on doctors' ability to prescribe opioid painkillers.
Those recommendations left many patients dealing with the mental and physical health consequences of rapidly reducing doses or abruptly stopping drugs they had been taking for years, carrying risks of withdrawal, depression, anxiety and even suicide. .
Help for Chronic Pain Sufferers
In November, the agency published new guidelines, encouraging doctors to focus on the individual needs of patients.
While the guidelines still say that opioids should not be the preferred choice for pain, they do ease recommendations on dose limits, which were strict in the 2016 CDC guidance. The new standards also caution physicians about the risks associated with rapid dose changes after prolonged use.
But some doctors worry that new recommendations will take a long time to make a significant difference, and they may be few or late for some patients.
Reasons include a lack of coordination from other federal agencies, fear of legal consequences among providers, state legislators hesitant to change laws, and the widespread stigma surrounding opioid medicines.
People who oppose the sale of illegal drugs on Snapchat protest in front of the company's headquarters to call for stricter restrictions on the social network, after the fatal fentanyl overdose, Santa Monica, California, June 2022.Ringo Chiu / AFP viaGetty Images
The 2016 guidelines for prescribing opioids for people with chronic pain filled a gap for state officials seeking solutions to the overdose crisis, said Dr. Pooja Lagisetty, an assistant professor of medicine at the University of Michigan Medical School.
Lagisetty said the dozens of laws states have passed limiting how providers prescribe or dispense those drugs had one effect: a decline in opioid prescriptions even as overdoses continued to rise.
[The new drug mix that makes the “deadliest substance the country has ever faced, fentanyl, even deadlier”]
The CDC's early guidelines "put everyone on the alert," said Dr. Bobby Mukkamala, chair of the American Medical Association's Pain Management and Substance Use Task Force.
Doctors reduced the number of opioid pills they prescribed after surgeries, he said.
The 2022 revisions are "a dramatic change," he said.
A young man dies after taking a marijuana candy adulterated with fentanyl: his mother denounces Snapchat
March 17, 202302:31
It's hard to overstate the human cost of the opioid crisis.
Opioid overdose deaths have risen steadily in the United States over the past two decades, peaking early in the COVID-19 pandemic.
The CDC says illicit fentanyl has fueled a recent spike in overdose deaths.
Taking the perspective of chronic pain patients into account, the latest recommendations try to reduce some of the harm to people who had benefited from opioids but were cut off, said Dr. Jeanmarie Perrone, director of Penn Medicine Center for Addiction Medicine and Policy.
[A wave of fentanyl overdoses among young Latinos brings pain and frustration to this Texas city]
“I hope we continue to spread caution without spreading the fear of never using opioids too much,” said Perrone, who helped craft the latest CDC recommendations.
Christopher Jones, director of the CDC's National Center for Injury Prevention and Control, said the updated recommendations are not a regulatory mandate but only a tool to help physicians "make informed, person-centered decisions related to pain treatment”.
The dramatic images of the fentanyl crisis in border cities
Oct 16, 202202:21
Multiple studies question whether opioids are the most effective way to treat chronic pain in the long term.
But tapering off drugs is associated with overdose deaths and suicide, and the risk increases the longer a person has been taking opioids, according to research by Dr. Stefan Kertesz, a professor of medicine at the University of Alabama-Birmingham.
He said the new CDC guidance reflects "an extraordinary amount of input" from chronic pain patients and their doctors, but he doubts it will have much of an impact if the Food and Drug Administration (FDA) and Drug Enforcement Administration (DEA) do not change the way they enforce federal laws.
[Drug overdose deaths are at an all-time high, and the coronavirus pandemic isn't just to blame]
The FDA approves new drugs and their reformulations, but the guidance it provides on starting or withdrawing the drug for patients might urge doctors to do so with caution, Kertesz said.
The DEA, which investigates doctors suspected of illegally prescribing opioids, declined to comment.
The DEA's pursuit of corrupt doctors put Danny Elliott of Warner Robins, Georgia, in a horrible situation, his brother, Jim, said.
An evidence bag containing the opioid fentanyl disguised as oxycodone at the Fresno County Sheriff's Office, August 2020. Right: Photo of Jackson Laughinghouse in his mother's bed, Greenville, North Carolina, July 2022. Jackson died of a opioid overdose in 2013. Left: Craig Kohlruss/Fresno Bee/Tribune News Service via Getty Images.
Right: Madeline Gray/The Washington Post via Getty Images
In 1991, Danny, a representative of a pharmaceutical company, suffered an electric shock.
He took pain medication for the resulting brain injury for years until his doctor faced federal charges for illegally dispensing prescription opioids, Jim said.
Danny turned to doctors out of state, first in Texas and then in California.
But the DEA suspended the license of his last doctor last year and was unable to find a new doctor to prescribe those drugs, Jim said.
[Historic judgment against the pharmaceutical company Johnson and Johnson: he must pay 572 million for the opioid epidemic]
Danny, 61, and his wife, Gretchen, 59, committed suicide in November.
“I'm really frustrated and angry that pain patients are mistreated,” Jim said.
Shortly before he died, Danny became an advocate against drug reduction.
Chronic pain patients who spoke to KHN pointed to his plight by asking for more access to opioid medications.
Opioid addictions can start at home, and Latinos are vulnerable.
So you can protect yourself
Nov 17, 202101:33
Even for people with a prescription, it's not always easy to get the medicines they need.
Pharmacy chains like CVS and Walgreens and drug wholesalers like Johnson & Johnson have settled multibillion-dollar lawsuits for their role in the opioid crisis.
Some pharmacies have seen their opioid dispensing limited or cut, said Ciaccia of 3 Axis Advisors.
[CVS and Walmart agree with West Virginia to pay $147.5 million for its role in the opioid crisis]
Rheba Smith, 61, of Atlanta, said her pharmacy stopped filling her prescriptions for Percocet and MS Contin in December.
She had taken these opioid medications for years to control chronic pain after her iliac nerve was mistakenly severed during surgery, she said.
Smith has experienced pain in his left leg since a nerve was severed during surgery years ago.
But in December his pharmacy stopped filling his prescriptions for pain relievers. Andy Miller / KHN
Smith said she visited nearly two dozen pharmacies in early January but couldn't find one that could fill her prescriptions.
He finally found a local mail-order pharmacy that filled him with a month's supply of Percocet.
But now that medicine and MS Contin are not available, the pharmacy told him.
“It has been a horrible three months.
I've been in terrible pain,” Smith said.
[Pharmaceutical company Purdue Pharma admits criminal guilt in the opioid epidemic over the drug OxyContin]
Many patients fear a future of constant pain.
Layman thinks of everything he would do to get medicine.
“Would you be willing to buy drugs on the street?
To go to an addiction clinic and try to get pain treatment there?
What are you willing to do to stay alive, she said.
"That's what it all comes down to."
KHN
(Kaiser Health News) is the newsroom of
KFF
(Kaiser Family Foundation), which produces in-depth journalism on health.
It is one of the three main programs of KFF, a non-profit organization that analyzes the problems of health and public health in the nation.