Jessica Leiman estimates that she has called more than 150 doctors over the past few years looking for someone to prescribe opioids for her chronic pain.
“A lot of them are just offensive,” said the 40-year-old, who lives in Dallas. “They say things like, ‘We don’t treat drug addicts.’
Leyman tried a variety of non-opioid treatments to help the intense daily pain caused by double scoliosis, a collapsed spinal disc and facet joint arthritis. But he said nothing works as well as methadone, the opioid he’s been taking since 2013.
The last phone calls came late last year, after her previous doctor closed her 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.
Layman is one of millions living in the United States with chronic pain. Many have struggled to get opioid prescriptions written and filled since the 2016 Centers for Disease Control and Prevention guidelines, inspired by laws cracking down on doctor and pharmacy practices. The CDC recently updated those recommendations in an effort to soften their impact, but doctors, patients, researchers and advocates say the damage is done.
“We had a huge opioid problem that needed to be fixed,” said Antonio Ciaccia, president of 3 Axis Advisors, a consulting firm that analyzes prescription drug pricing. “However, federal pressures and guidelines have created collateral damage. patients are left high and dry.”
Born out of efforts to combat the nation’s overdose crisis, the guideline led to legal restrictions on doctors’ ability to prescribe painkillers. The recommendations left many patients facing the mental and physical health consequences of rapidly decreasing dosage or abruptly stopping a medication they had been taking for years, leading to withdrawal, depression, anxiety and even suicide.
In November, the agency released new guidelines encouraging doctors to focus on the individual needs of patients. While the guidelines still say opioids should not be an option for pain, they ease recommendations on dose limits that were widely viewed as harsh rules in the CDC’s 2016 guidelines. The new standards also warn doctors about the risks associated with rapid dose changes after long-term use.
But some doctors worry that the new recommendations will take a long time to make a meaningful difference and could be too little, too late for some patients. Reasons include a lack of coordination by other federal agencies, fear of legal ramifications among providers, state policymakers hesitant to fix laws, and widespread stigma surrounding opioids.
The 2016 guidelines for prescribing opioids for people with chronic pain have filled a vacuum for government officials looking for solutions to the overdose crisis, said Dr. Pua Lagiseth, an assistant professor of medicine at the University of Michigan Medical School.
He said dozens of laws enacted by states restrict how providers prescribe or dispense the drugs that have had an effect;
The CDC’s first guidelines “put everyone on notice,” said Dr. Bobby Mukkamala, chair of the American Medical Association’s Task Force on Substance Use and Pain Care. Doctors have reduced the number of opioid pills they prescribe after surgeries, he said. The 2022 revisions are “a drastic change,” he said.
The human toll of the opioid crisis is hard to overstate. Opioid overdose deaths have risen steadily in the U.S. over the past two decades, increasing at the onset of the Covid-19 pandemic. The CDC says illegal fentanyl has contributed to a recent spike in overdose deaths.
Taking the perspective of chronic pain patients into account, the latest recommendations try to reduce some of the harms for people who had benefited from opioids but were withdrawn from them, said Dr. Jeanmarie Perron of the Penn Medicine Center for Addiction Medicine and Policy. .
“I hope we just continue to spread caution, not spread too much fear about never using opioids,” said Perron, who helped draft the CDC’s latest recommendations.
Christopher Jones, director of the CDC’s National Center for Injury Prevention and Control, said the updated recommendations are not a regulatory mandate, just a tool to help doctors “make informed, person-centered decisions about pain care.”
Many studies question whether opioids are the most effective way to treat long-term chronic pain. But the drug is associated with fewer overdose and suicide deaths, and the risk increases the longer a person uses opioids, according to research by Dr. Stefan Kertess, a professor of medicine at the University of Alabama-Birmingham.
He said the CDC’s new guidance reflects “extraordinary input” from chronic pain patients and their doctors, but doubts it will have much impact unless the FDA and Drug Enforcement Administration change how they enforce federal laws.
The FDA approves new drugs and their reformulations, but the guidance it provides on how to start or wean patients can prompt doctors to do so with caution, Kertes said. The DEA, which investigates doctors suspected of illegally prescribing opioids, declined to comment.
The DEA’s pursuit of doctors put Danny Elliott of Warner Robins, Georgia, in a dire situation, said his brother, Jim.
In 1991, Danny, a pharmaceutical company representative, was electrocuted. He took pain medication for a brain injury for years until his doctor faced federal charges for illegally dispensing prescription opioids, Jim said.
Danny sought out doctors out of state, first in Texas and then in California. But Dan’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.
In November, Danny, 61, and his wife, Gretchen, 59, committed suicide. “I’m really frustrated and angry about cutting out pain patients,” Jim said.
Denny became an advocate against mandatory drug reduction before his death. Chronic pain patients who spoke to KHN pointed to his plight, calling for more access to opioid medications.
Even for people with prescriptions, it’s not always easy to get the drugs they need.
Pharmacy chains and drug wholesalers have settled billions of dollars in lawsuits over their alleged role in the opioid crisis. Some pharmacies have seen their opioid supplies limited or reduced, noted Ciaccia with 3 Axis Advisors.
Reba Smith, 61, of Atlanta, said her pharmacy stopped her prescriptions for Percocet and MS Contin in December. He had taken those opioid medications for years to manage chronic pain after being mistakenly cut during surgery, he said.
Smith said he visited about two dozen pharmacies in early January but couldn’t find one that would fill his prescriptions. She finally found a local mail-order pharmacy that filled a month’s supply of Percocet. But now that the drug and MS Contin are not available, he was told at the pharmacy.
“It’s been a terrible three months. I was in terrible pain,” Smith said.
Many patients fear the future of constant pain. Layman thinks about how far he has to go to get the medicine.
“Would you be willing to buy drugs off the street? Would you like to go to a drug clinic and try to get pain treatment there? What are you willing to do to stay alive?’ he said. “That’s what it comes down to.”