The Centers for Disease Control and Prevention wants the public to weigh in on its proposed new guidelines for when and how doctors should prescribe opioid painkillers.
They are about to have their ears full in New Hampshire: chronic pain patients, who say they have been victims of overzealous efforts to fight the ongoing opioid epidemic that has left them without the drugs they need to function.
Bill Murphy, a Manchester man who has become a leading advocate for chronic pain patients like himself, previously posted a comment on the Federal Register criticizing the CDC’s draft clinical guidelines on prescribing opioids.
The two biggest problems he faces, Murphy said, are chronic pain patients who are forced to “cut back” on opioid painkillers they’ve been taking safely for years, and patients whose doctors have stopped to practice and who cannot find new doctors who will take them. And both are direct consequences of the CDC’s latest proposed guidelines for prescribing opioids in 2016, he said.
This direction, adopted in response to the opioid epidemic, has had “unintended consequences,” according to James Potter, executive vice president and CEO of the New Hampshire Medical Society.
The agency has recommended specific dosage limits for opioid painkillers to reduce the risk of addiction and overdose. And with federal and state agencies closely monitoring prescriptions for these drugs, doctors began limiting the amount of opioids they prescribed and “trimming” many chronic pain patients off the medication.
There was no clinical justification for reducing opioid doses for patients with chronic pain, Potter said; he believes it was done in response to lawsuits against drug manufacturers and distributors.
But with the number of drug overdose deaths rising here, New Hampshire’s Board of Medicine passed new rules incorporating CDC guidelines into clinical practice in 2016.
The chronic pain community has mobilized. They held “Don’t Punish Pain” rallies, wrote letters and lobbied their lawmakers to change.
In 2019, the Food and Drug Administration issued a safety alert, advising physicians not to abruptly discontinue opioid medications for patients who are physically dependent on them. The warning came after reports of “serious harm” to patients, including “severe withdrawal symptoms, uncontrolled pain, psychological distress, and suicide,” the FDA warned.
And in 2020, the New Hampshire Legislature passed a measure to protect chronic pain patients and their doctors.
“All decisions regarding the treatment of patients with chronic pain should be made by the treating practitioner even when it is determined that the treatment requires the prescription of opioid analgesics,” the law says.
And it states that “the ordering, prescribing, dispensing, administering, or payment for controlled substances, including opioid pain relievers, should in no way be predetermined by specific milligram equivalent morphine (MME) guidelines. )”. (MME is a way to calculate the dosage of opioids such as oxycodone and fentanyl.)
In January, the Board of Medicine passed new rules that prohibit arbitrary prescription dose limits for patients with chronic pain, Potter said.
“It provides clear guidance and flexibility to physicians in prescribing opioids for patients with chronic pain, where opioid treatment has improved functionality and quality of life,” he said. “The Board of Medicine has really recognized that for chronic pain, it’s really about increasing functionality and quality of life.”
Now the CDC has come out with new clinical guidelines for prescribing opioids, and while patient advocates see improvements, they say problems persist.
The project recommends different approaches for patients with chronic pain and for “opioid naïve” patients receiving such drugs for the first time.
The agency makes it clear, “Payers, health systems, and state medical boards should not use this clinical practice guideline to set rigid standards related to dose or duration of opioid therapy, and should s ensure that policies based on conservative dosage thresholds do not lead to rapid tapering or abrupt discontinuation of opioids, and that policies do not penalize clinicians for accepting new patients using prescribed opioids for chronic pain , including those receiving high doses of opioids.
And he cautions: “Clinicians must not abandon patients.
But the CDC draft also includes numerous references to limiting opioid doses to 50 MME per day for acute pain and for patients being prescribed the drug for the first time.
And patient advocates say that’s a problem.
Dr David Nagel, who has cared for pain patients for many years, said including a 50 MME limit in any way is ‘incredibly dangerous and should be removed’ .
Nagel, author of “Needless Suffering: How Society Fails those with Chronic Pain,” said previous federal guidelines — which included a dose limit of 100 MME — resulted in some pain patients dying by suicide and others turning to deadly street drugs when their legal painkillers were cut.
“That number needs to go,” Nagel said. “You are going to kill people.
Potter of the New Hampshire Medical Society said his organization would submit comments urging the CDC to get rid of those dose limits.
“They should follow New Hampshire’s lead and ban arbitrary dose limits for chronic pain,” he said. “I’m a bit shocked they didn’t learn the first time that any arbitrary limit would be misinterpreted.”
Nagel said such clinical guidelines should never be used to craft public policy, and the CDC needs to make that even clearer in the final draft. “They’re naive to think that policymakers aren’t going to use this to make policy,” he said.
In addition, he said, “The guidance must include a statement that non-consensual opioid dose reduction in people who respond well to the drug and do not abuse it, is contrary to the ethical and should never be practiced”.
The law passed by New Hampshire in 2020 ensures that chronic pain patients here “are treated with dignity and are not unduly denied the medications necessary to treat their condition.”
“When it happened, we were thrilled,” said patient advocate Murphy.
But despite New Hampshire’s new law banning dose limits, Murphy said, he’s spoken with three doctors who work in pain management practices who tell him their groups have already adopted policies with dose limits. of 50 MS of the CDC’s draft guidelines.
Meanwhile, the Board of Medicine’s website still shows the old rules from 2016.
living with pain
Murphy, who suffers from chronic abdominal adhesions, said he had undergone a “voluntary” reduction, reducing the dose of painkillers he takes every few months.
“I’ll be honest with you,” he said. “My only reason for doing this is the fear that one day I will lose my doctor and be in the same situation as some of the patients I help.”
One such patient is Bethany McMahon from Derry.
After being assaulted and injured in the back in 2010, McMahon could not walk for 2 and a half years and her legs atrophied.
Then a doctor diagnosed her with complex regional pain syndrome and put her on fentanyl, an opioid painkiller. It worked really well and McMahon was getting back on his feet.
When illicit fentanyl became the drug of choice in the opioid epidemic, 31-year-old McMahon asked his doctor to stop it. “I really didn’t like the stigma associated with it,” she said.
His doctor switched him to long-acting morphine and oxycodone for breakthrough pain. But her doctor retired at the end of 2020 and McMahon’s new doctor insisted that she stop taking her medication.
She tries to find a new doctor, but without success so far. “A lot of them will say right away that we don’t prescribe opioids, and unfortunately opioids are the only treatment available for CRPS,” she said.
Her mother, Rebecca McMahon, is her caregiver and advocate, and Bill Murphy also tries to help her. Rebecca McMahon said she called many doctors, but none had openings for new patients. “They just don’t want to take it,” she said.
It’s hard for a mother to watch her daughter suffer all the time. “CRPS is called suicidal disease because the pain levels are off the charts,” she said.
“I don’t know what we’re going to do,” Rebecca said. “She’s afraid of her mind.”
Lena Zerbinopoulos, accountant, Pilates instructor and chronic pain patient, recently moved from Weare to Manchester, where she has opened a Pilates studio to help patients like her who benefit from exercise but have a disability .
After years of suffering, Zerbinopoulos was diagnosed in 2016 with Ehlers-Danlos syndrome, a connective tissue disorder that affects the heart, kidneys, eyes, immune system, muscles and even mental health.
About 18 months ago, her doctor tried a promising new treatment for Ehlers-Danlos syndrome: low-dose naltrexone. The drug is used to treat opioid use disorder, but at low doses it has shown promise in relieving pain and other symptoms of EDS, she said.
Zerbinopoulos does everything she can to take care of herself; she makes sure to eat the right foods and exercise.
She does not take opioids for her pain, which can be debilitating. But she felt compelled to testify about the Chronic Pain Bill in 2020 to defend other patients who depend on drugs for a living, she said.
Zerbinopoulos said she plans to submit a comment to the CDC on clinical guidelines on opioids. It’s more of a question.
“When it comes to the effects of chronic pain on the body, why is the risk of addiction assumed to be more devastating than the effects of living in a state of pain?” she says. “That can be devastating in itself.”