Marty Mioni knows what she'd do if her pain medications were taken away.
"I'd go find a gun," the 63-year-old Port Orchard resident said.
Mioni isn't being dramatic. For some chronic pain patients, who fear they could lose access to opioid medications under evolving prescribing guidelines aimed at countering the nationwide opioid crisis, suicide is a realistic alternative to a life of grinding pain.
Mioni has been taking opioids for 15 years to cope with pain caused by a ruptured disc suffered in a workplace injury and lingering nerve damage from a surgery. She says she's tried every other form of therapy available to her, even volunteering for trials of experimental treatments.
"This is the only thing that works for me," Mioni said of opioid medications.
But this year, Mioni said her provider began gradually tapering her Oxycodone prescription in response to new guidelines. Her doses, which she takes several times a day, no longer mask her pain. Just cooking dinner this summer has become a "little struggle," she said. She worries more restrictions are coming.
"If they don't get this resolved, I'm very fearful we're going to lose our pain medications totally," Mioni said.
Fellow patient Gretchen Lont, 52, attempted suicide once a decade ago after throbbing back pain from several falls drove her into depression. An opioid prescription was the only thing that allowed her to live a normal life, she said.
Like Mioni, Lont's doses are being tapered and the pain is creeping back.
"I do nothing now," she said. "When you have pain twenty-four/seven, and it never goes away, it gnaws at you."
Lont feels the rights of chronic pain patients are being trampled as lawmakers and health care leaders rush to respond to the opioid crisis.
"We're treated like addicts, but without the compassion," she said.
Mioni and Lont have joined other chronic pain patients banding together to bring awareness to their situation. "Don't Punish Pain" rallies being organized on Facebook are planned across the country Sept. 18, including one in Olympia.
A trend toward tapering
The patient protests come at a time of rapid change in the field of pain management.
Guidelines released by the federal Centers for Disease Control and Prevention and the state Agency Medical Directors' Group encourage non-opioid treatments for chronic pain and discourage high doses of opioids (greater than 90 morphine milligram equivalents under CDC guidelines and 120 morphine milligram equivalents under the state guidelines), among other recommendations.
The state Department of Health is in the midst of refining a set of rules for opioid prescribing, monitoring and tracking under legislation passed in 2017. Those rules could be finalized later this year.
Locally, a project is underway in Kitsap, Clallam and Jefferson counties to help practices better manage opioids using a "Six Building Blocks" method developed by the University of Washington.
The reform efforts respond to a wave of opioid abuse and overdose deaths — partially fueled by over-prescribing — and greater understanding of the health risks associated with high doses of opioids.
"There's been a large push to say, 'what's the appropriate ceiling for opioids?'" said Dr. Nathan Schlicher with CHI Franciscan Health, who serves on a Washington State Medical Association and Washington State Hospital Association task force for safe opioid practices.
Existing guidelines and the state's proposed prescribing rules don't specifically recommend providers taper doses for chronic pain patients unless the patient is out of compliance with the stringent pain management agreement they signed with their provider, are taking escalating doses without improvement in pain, or meet other criteria.
Dr. Jon Hillyer with Peninsula Pain Clinic in Bremerton, which prescribes opioids alongside other pain therapies, said the decision to taper is made on a case-by-case basis. One consideration is growing evidence that high doses of opioids do not provide greater benefits than moderate doses and increase the risk of harm for patients, he said. Another consideration is that pain patients prescribed high doses of opioids may not be able to find treatment in the future if prescribing guidelines become more stringent or they need to switch providers.
"We're trying to work the dosage down for some patients," Hillyer said, noting that most patients respond well to the change. "We can reduce some side effects and improve their quality of life."
Hillyer recognizes there is a subset of chronic pain patients whose quality of life could be hurt by tapering. These patients have for years used consistent, high doses of opioids to successfully manage their pain and have followed all the rules.
"They have well-established diagnoses and long-term compliance," Hillyer said.
These patients have tried other forms of pain therapy available and only find relief with opioids.
"They don't have an alternative," Hillyer said.
Feeling the pain
A shoulder surgery in 2005 left Candyce Smith with relentless pain.
The procedure damaged nerves in her neck that never regenerated. Later her back went out and she was diagnosed with degenerative disc disease — a condition that layered on still more nerve pain.
An opioid prescription allowed her to keep working at her office job. Smith has been on the same dose for more than a decade, she said.
"What it was doing was taking care of my pain to the point that I could work," the 65-year-old Bremerton resident said of the pills.
Smith said her dose is now being tapered due to the prescribing guidelines, and her pain has mounted to the point that she can no longer sit or stand comfortably for any length of time. She's had to quit her job and file for disability benefits.
"I was just not expecting this at all," she said.
Smith is scared she'll have to keep living in pain.
"I don't know what to do for me," she said. "I really don't. Something has to change here."
Smith, Mioni and Lont — all patients at Peninsula Pain Clinic — agree restrictions are necessary to keep opioids from being abused. But they believe new prescribing guidelines are reactionary and have created a one-size-fits-all policy that doesn't fit their situation as rule-abiding chronic pain patients.
"The only thing I'm addicted to is my quality of life," Smith said, "and I'm losing that."
Mioni fears some patients could choose to commit suicide rather than live with chronic pain and believes more patients whose doses are tapered will be more likely to buy drugs illegally and self-medicate.
"Don't they know that if they take people off their meds, they're going to go find it somewhere else?" she said.
The patients want to be sure any rules adopted allow flexibility for providers to continue prescribing high doses of opioids to chronic pain patients who depend on the medication to manage their pain and don't respond to other treatments.
"For most of us, there are no alternatives," Smith said.
Pendulum swinging on opioids
A reform effort that has frustrated some patients is also challenging health care providers.
"It's a pendulum that's swung," Hillyer at Peninsula Pain said.
In practice for more than 20 years, Hillyer recalls when the pendulum swung hard in opposite direction.
By the mid-1990s, escalating doses of opioid medications were an accepted treatment for chronic pain. Use of opioids became ingrained in the culture of health care, Hillyer said, as providers prescribed higher doses for more people.
Daily regimens of more than 300 morphine milligram equivalents — three times the Centers for Disease Control's new recommended limit — were not uncommon.
"Opiates, in a way, became one of the first-line treatments because they were seen as safe," Schlicher with CHI Franciscan Health said.
The national health crisis that followed forced a re-evaluation of those practices. According to the Centers for Disease Control, more than 350,000 people in the U.S. died from overdoses related to prescription or illegal opioids between 2009 and 2016. More than 300 Kitsap residents died from opioid overdose between 2000 and 2016, according to the Department of Health.
As the pendulum swings toward tighter regulation, Hillyer said it has become more difficult for practitioners to serve pain patients. New opioid prescriptions are scrutinized by insurance companies, pharmacies and agencies overseeing workers' compensation claims.
"There are so many other areas becoming so restrictive that it's becoming tough to practice," he said.
The threat of discipline also looms over the industry. In 2016, state regulators cracked down on the Seattle Pain Centers clinics, suspending the medical license of its director and launching investigations into providers who worked at the clinics "based on concerns of poor practice standards." The company shut down abruptly, closing its eight offices, including one in Poulsbo, and leaving thousands of patients scrambling to find new providers.
In June, the Board of Osteopathic Medicine and Surgery charged Silverdale pain doctor Beno Kuharich with unprofessional conduct for what it alleged were unsafe prescription practices. Kuharich, a former Seattle Pain Centers provider currently practicing with The Doctors Clinic, vehemently denies the charges.
Hillyer said the disciplinary cases had the unintended consequence of making practitioners wary of prescribing opioids, reducing access to care for pain patients. Both Schlicher and Hillyer said the overall regulatory burden saddled on opioid prescriptions has caused many primary care providers to no longer utilize the medications, shifting the burden to specialty clinics like Peninsula Pain.
"We're seeing that change nationally," Schlicher said.
Schlicher, a former state senator, said policymakers need to create a set of rules that will counter the opioid crisis, create clear guidelines for providers that emphasize education rather than punishment, and be mindful of the individual needs of chronic pain patients. Rules should allow opioids to be a tool in the prescriber's toolbox, alongside a host of other therapies.
"We're working to address this epidemic on both sides, and we want to be respectful to patients," he said.
Hillyer believes that balance will be found eventually, even if the transition can be painful.
"It's a period when things are changing and change is difficult for providers and patients," he said. "But it's necessary."
