The Centers for Disease Control and Prevention wants the public to weigh in on its new proposed guidance for when and how doctors should prescribe opioid painkillers.

They’re about to get an earful from some in New Hampshire: chronic pain patients, who say they’ve been the victims of overzealous efforts to battle the ongoing opioid epidemic that left them without the medications they need to function.

Bill Murphy, a Manchester man who has become a leading advocate for chronic pain patients like him, has already posted a comment on the Federal Register, criticizing the CDC’s draft clinical guidance on opioid prescribing.

The two biggest issues he encounters, Murphy said, are chronic pain patients being forcibly “tapered” off opioid painkillers they’ve been taking safely for years, and patients whose doctors have stopped practicing and who cannot find new doctors who will take them on. And both are direct consequences of the last guidelines CDC offered for opioid prescribing in 2016, he said.

That guidance, adopted in response to the opioid epidemic, had “unintended consequences,” according to James Potter, executive vice president and CEO of the New Hampshire Medical Society.

The agency recommended specific dosing limits for opioid painkillers to reduce the risk of addiction and overdose. And with federal and state agencies closely monitoring prescriptions for these medications, doctors began limiting the amount of opioids they would prescribe, and “tapering” many chronic pain patients off medications.

There was no clinical justification to reduce opioid doses for chronic pain patients, Potter said; he believes it was done in response to the lawsuits that were being filed against drug makers and distributors.

But with the death toll rising from drug overdoses here, New Hampshire’s Board of Medicine adopted new rules incorporating the CDC’s guidance into clinical practice in 2016.

The chronic pain community mobilized. They held “Don’t Punish Pain” rallies, wrote letters and lobbied their lawmakers for change.

The Food and Drug Administration in 2019 issued a safety alert, advising doctors 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 “serious 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 experiencing chronic pain shall be made by the treating practitioner even when the treatment is determined to require the prescribing of opioid analgesics,” the law reads.

And it states, “Ordering, prescribing, dispensing, administering or paying for controlled substances, including opioid analgesics, shall not in any way be pre-determined by specific Morphine Milligram Equivalent (MME) guidelines.” (MME is a way of calculating dosing for opioids such as oxycodone and fentanyl.)

In January, the Board of Medicine adopted new rules that prohibit arbitrary prescription dose limits for chronic pain patients, Potter said.

“It provides clear guidance and flexibility for physicians in prescribing opioids for chronic pain patients, where opioid treatment has increased functionality and quality of life,” he said. “The Board of Medicine really recognized that for chronic pain it’s really about increasing functionality and quality of life.”

Limiting dosages

Now the CDC is out with new clinical guidance for prescribing opioids, and while patient advocates see improvements, they say problems persist.

The draft recommends different approaches for chronic pain patients and for “opioid-naive” patients getting 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 ensure that policies based on cautionary dosage thresholds do not result in rapid tapers or abrupt discontinuation of opioids, and that policies do not penalize clinicians for accepting new patients who are using prescribed opioids for chronic pain, including those receiving high doses of opioids. “

And it warns: “Clinicians should not abandon patients.”

But the CDC draft also includes numerous references to limiting opioid dosages to 50 MME per day for acute pain and for patients being prescribed the medication 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 fashion is “incredibly dangerous, and it needs to be taken out.”

Nagel, author of “Needless Suffering: How Society Fails Those with Chronic Pain,” said the previous federal guidance – which included a 100 MME dose limit – resulted in some pain patients dying by suicide and others turning to deadly street drugs when their legal painkillers were cut off.

“That number has to go,” Nagel said. “You’re going to kill people.”

New Hampshire Medical Society’s Potter said his organization will submit comments urging the CDC to get rid of those dose limits.

“They should follow New Hampshire’s lead and prohibit arbitrary dose limits for chronic pain,” he said. “I’m kind of shocked they didn’t learn the first time that any kind of arbitrary limit will be misinterpreted.”

Nagel said such clinical guidance should never be used to make 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.

Also, he said, “The guide must include a statement that non-consensual dose reduction of opioids in people that are responding well to the medication, and not abusing it, is unethical and should never be done.”

The law New Hampshire passed in 2020 ensures that chronic pain patients here “are treated with dignity and not unduly denied the medications needed to treat their conditions.”

“When that happened, we were ecstatic,” said Murphy, the patient advocate.

But despite New Hampshire’s new law prohibiting dose limits, Murphy said, he has spoken with three physicians who work in pain management practices who tell him their groups have already adopted policies with the 50 MME dose limits from the CDC’s draft guidance.

Meanwhile, the Board of Medicine’s website still has the old 2016 rules posted.

Living with pain

Murphy, who has chronic abdominal adhesion disease, said he has been going through “voluntary” tapering, reducing the dosage of painkillers he takes every few months.

“I’ll be honest with you,” he said. “My sole reason for doing it is the fear that one day, I’ll lose my physician and I’ll be in the same position as some of the patients I help.”

One of those patients is Bethany McMahon of Derry.

After she was assaulted and suffered a back injury in 2010, McMahon could not walk for 2½ years, and her legs atrophied.

Then a physician diagnosed her with complex regional pain syndrome and started her on fentanyl, an opioid painkiller. It worked really well, and McMahon was getting back on her feet.

When illicit fentanyl became the drug of choice in the opioid epidemic, McMahon, 31, asked her doctor to take her off the drug. “I really didn’t like the stigma associated with it,” she said.

Her doctor switched her to long-lasting morphine, and oxycodone for breakthrough pain. But her doctor retired at the end of 2020, and McMahon’s new doctor insisted on tapering her off the medications.

She’s trying to find a new doctor, but without luck so far. “A lot of them just straight up will say 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 her advocate, and Bill Murphy is trying to help as well. Rebecca McMahon said she has called numerous doctors, but none has openings for new patients. “They just flat out won’t take her,” she said.

It’s difficult for a mother to see her daughter in pain all the time. “CRPS is called the suicide 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 scared out of her mind.”

Lena Zerbinopoulos, an accountant, Pilates instructor and chronic pain patient, recently moved from Weare to Manchester, where she opened a Pilates studio to help patients like herself who benefit from exercise but struggle with disabilities.

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 new treatment that has shown promise for Ehlers-Danlos syndrome: low-dose Naltrexone. The drug is used to treat opioid use disorder, but at low doses it has shown promise to relieve the pain and other symptoms of EDS, she said.

Zerbinopoulos does everything she can to take care of herself; she is careful to eat the right foods and to exercise.

She does not take opioids for her pain, which can be debilitating. But she felt compelled to testify on the chronic pain bill in 2020 to advocate for other patients who depend on the medication to live, she said.

Zerbinopoulos said she plans to submit a comment to the CDC on the opioids clinical guidance. It’s more of a question.

“When it comes to the effects of chronic pain on the body, why is it assumed that the risk of addiction is more devastating than the effects of living in a state of pain?” she said. “That can be devastating in itself.”

To view and comment on the CDC’s proposed clinical practice guidance on opioid prescribing, click here. Comments are due by April 11.

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