Pain sufferers rise up against ‘inhumane’ limits on opioids

January 30, 2019

HARTFORD — Kelly Eaves used to be a professional dancer. Now, on many days she can’t get out of bed.

Eaves, 43, has been in pain every day for two years. She has Ehlers-Danlos Syndrome, a connective tissue disorder. Her opioid medication helps her deal with the grinding pain that can leave her screaming and crying.

The national opioid crisis is making her medication harder to get, Eaves said. She’s not alone, as restricted access due to the addiction crisis is leaving her and many patients with chronic pain unable to get the medications they say they need.

When she moved to Connecticut in 2015, it took her a year and half to find a doctor who would prescribe her the medicine she had been receiving from her old physician.

She drives an hour and 15 minutes from her home in Lisbon to a pain clinic in Milford to get it.

“Right now I am terrified that my medication is going to be taken away or it is going to be cut back,” said Eaves, her teal hair offset by bright red lips. “The anxiety that you live with is inhumane.”

In the bitter cold Tuesday, Eaves sat on a walker outside the north entrance of the state Capitol, holding a sign declaring “Chronic pain patients require chronic pain meds!”

She was among about a half dozen people who met with lawmakers, then staged a small rally to demand help for chronic pain sufferers. They wanted a bill to protect their access to medication.

Exactly what it would say, they weren’t sure.

The rally, the group’s second in Connecticut since last summer, was one of about a dozen around the country mounted by an organization called “Don’t Punish Pain.” Many rallies in other states appear to have been postponed, some in locations with extreme cold.

While thousands of deaths and overdoses related to opioids have garnered strong state and federal responses — and have led to lawsuits against Stamford-based Purdue Pharma, maker of OxyContin — this group says the crackdown is hurting them. They’re not drug addicts, but they rely on opioids to manage their chronic pain.

Published in 2016, new Centers for Disease Control Guidelines For Prescribing Opioids for Chronic Pain recommend lower doses of opioid medication than previously.

In April 2018, the Connecticut Hospital Association, State Medical Society and Connecticut Chapter of the American College of Emergency Physicians also released new guidelines recommending emergency department staff treating chronic pain patients lower the dose of prescribed opioids from 30 pills to a three-day supply. This is more restrictive than state law, which limits opioid prescriptions to a seven-day supply for adults and a five-day supply for minors.

As a result of all these changes, Tigger Edgecomb of Canterbury has watched doctors try to cut his 34-year-old quadrapelegic son’s opioid dosage by two-thirds, Edgecomb said.

“You know about opioid addiction but you don’t hear about the other side of the coin,” Edgecomb said. “He’s quadrapelegic and he suffers pain.”

Eaves said when she tries to ask for more medication, she is treated “like a criminal....It’s offensive,” Eaves said.

People at the rally said they believed doctors were limiting medication not for health reasons, but because the doctor feared federal Drug Enforcement Agency scrutiny. Physicians can face legal sanctions for inappropriate prescribing, including malpractice liability, medical board discipline and criminal convictions.

One man from Tolland, whose wife and two siblings treat their chronic pain with opioids, said it was nearly impossible to find a doctor willing to prescribe opioids for chronic pain now. He was so fearful of jeopardizing his family’s relationship with their current doctor that he requested his name not be used in print.

Several people said they had written to their lawmakers for help, but received little response.

emunson@hearstmediact.com; Twitter: @emiliemunson