For more than 10 years, Shannon Greenwood took 16 opioid pills a day for her chronic pain. But over the last eight years, the 59-year-old Longview resident has cut the daily dose to two.
“It was a long, hard road,” Greenwood said. “I was going up and down like a roller coaster, and it just ruins your life. You don’t have the ability to do what you used to do, and you don’t want to run out of feeling good before you do all your duties for the day.”
Onalaska resident and chronic pain sufferer Ramona Poppe also lowered her opioid dose. Poppe was born with a congenital deformity and has had more than 20 operations since she was a child. About four years ago, the 56-year-old dropped her daily dose from seven pills to five over several months.
Poppe said the pills don’t take away all of her pain, but they allow her to keep a clear head. But if her dose drops any lower, Poppe said she would lose her ability to function.
Up until now, state regulations have allowed opioid users to slowly wean themselves off the addictive medications, and Poppe and Greenwood both did so with the help of Longview doctor Rich Kirkpatrick. But new state regulations in the works may force patients and their doctors to withdraw the medications faster, and that could be bad news for chronic pain sufferers. Many of them are living in fear of losing their prescriptions and ability to manage pain.
The new rules could have special significance for Cowlitz County, which had the state’s highest opioid-related overdose deaths from 2011 to 2015. The county rate of patients with chronic opioid prescriptions was 33 percent higher than the state average in 2017, according to the state health department.
Last year, the Legislature passed a bill requiring five healthcare professional boards and commissions to adopt the new rules for prescribing opioids by Jan. 1. The draft of the rules doesn’t set a threshold for prescriptions, but doctors and patients are concerned the final rules will.
According to the American Academy of Pain Medicine, 100 million people in the United States suffer from chronic pain. Kirkpatrick and former Longview doctor Anne Dubosky, who now practices in Central Washington, are concerned the changes are targeting a group that doesn’t have a high rate of overdose deaths.
“The state is creating new regulations in response to the increase in opioid overdose deaths,” Dubosky said. “But there’s no evidence that it is chronic pain patients dying of these overdoses.”
Kirkpatrick said many chronic pain patients feel guilty, thinking they did something to contribute to the overall increase in overdose deaths. The potential threat from new regulations just adds to that concern, he said.
“Patients with chronic pain are anxious because they don’t think they can survive if they are forced off medication,” Kirkpatrick said.
Poppe said her ability to function would suffer if her dose of opioids is tapered too low. The 56-year-old has walked with crutches on and off since she was nine. Despite lifelong pain, Poppe didn’t start taking opioids regularly until she was in her 30s. Her current prescription enables her to take care of her 86-year-old mother.
“It’s difficult, but if I wasn’t on opioids, she would be in a nursing home, and I’d be by myself,” Poppe said.
According to the Centers for Disease Control’s 2016 guidelines on prescribing opioids for chronic pain, there have been few studies to assess the long-term benefits of opioids for chronic pain. However, it states that use of opioid pain medication creates serious risks, including overdose and opioid use disorder. Patients also can experience tolerance and loss of effectiveness over time.
Nevertheless, a growing number of chronic pain sufferers are starting to push back against calls to restrict them.
Martha Mioni of Port Orchard, Wash., is organizing a “Don’t Punish Pain” rally for Tuesday at the State Capitol building in Olympia. The 64-year-old takes opioids for chronic back pain caused by an injury. She is organizing the rally to help bring attention to how the opioid crisis is affecting people with chronic pain. Mioni said her dose already has been forcibly tapered back. She is worried the regulations will lower it even more.
“Anytime I go to the doctor, I wonder how much it’ll be tapered this month,” Mioni said Friday. “I’ll be bedridden if they keep going like they are.”
Mioni said the change in her dose has nothing to do with her health and is a result of doctors feeling pressure from the CDC to lower doses.
The CDC’s 2016 guidelines on prescribing opioids for chronic pain suggest doctors limit patients to a dose of 90 morphine milligram equivalents per day. (Morphine milligram equivalents are used to compare relative potency of different opioids.) Dubosky said this number is just a guideline, but states are taking it as a rule that must be followed.
“My concern is how quickly we’re instituting rules that aren’t based on evidence,” Dubosky said. “I feel that as a physician, my ability to treat patients as individuals and use my judgment are being taken away.”
The draft of state regulations would require a mandatory consultation threshold of 120 morphine milligram equivalents. That means patients who need more potent prescription needs would be required to see a pain management specialist. Kirkpatrick said a problem with this proposal is the lack of pain specialists.
Mioni said it can take over a year to get in to see a pain specialist. The department of health lists 62 pain clinics across the state, but it notes the clinics may not take new patients.
Department of Health spokeswoman Julie Graham said the department knows pain patients are concerned about the change, but it wants people to have a clear idea of what the rules do and don’t do. She said the regulations wouldn’t require providers to change care as long as they are following the rules.
The healthcare boards involved in drafting the rules will separately implement the new rules, Graham said. Health officials are finalizing the regulations based on comments from the boards involved. It’s unclear what all the changes will be until the rules are finalized.
The new state regulations are the latest change in the evolving approach to opioids.
Dubosky said there’s been a “pendulum swing” in prescribing opioids. Before the 1990s, doctors didn’t prescribe narcotics for things other than cancer, end-of-life and acute pain, she said. After a push to treat chronic pain, doctors began to prescribe opioids to more patients and at higher doses. Now the pendulum has swung back since the rise in addiction and overdose deaths, Dubosky said.
“I never agreed with using higher than normal doses of narcotics,” Dubosky said. “But a lot of providers did, and now we’re all bearing the burden.”
Kirkpatrick said regulators need to separate people who are using illegal drugs for recreation and chronic pain patients using narcotics to function normally. Poppe echoed that sentiment.
“Why should I be lumped together with that group of people who have addictive personalities, when all I want to do is have a decent life?” Poppe said.
Patients wishing to start or continue an opioid prescription for chronic pain go through a process beforehand, Kirkpatrick said. They first have to try alternative treatments before starting opioids, he said. Patients would then fill out a questionnaire to find out if they are prone to substance abuse and depression and be tested for drug use, he said. But Kirkpatrick isn’t accepting new chronic pain patients.
Kirkpatrick said his practice has seven full-time and four-part time providers. Altogether, they see about 200 hundred patients with chronic pain. He said they don’t feel like they have room for any more, and they’re turning away about four people per day who call for pain management.
There is a shortage of doctors willing to prescribe opioids across the state and country, Kirkpatrick said. Hesitation stems from concern about being under scrutiny of drug enforcement and state agencies, as well as the amount of work it takes to care for chronic pain patients, Dubosky said.
“It’s emotional to discuss with people cutting back on their medications based on the new guidelines,” Dubosky said. “Those making the regulations have forgotten how difficult it is.”
Oversight is not a bad thing, and some doctors have contributed to the problem by prescribing opioids to patients knowing they are selling or giving pills away, Dubosky said. That problem is not going anywhere, but there are better ways to drop opioid doses than a sweeping regulation cutting off doses at a certain level, Dubosky said.
“It’s important to establish rapport with patients,” Dubosky said. “The most successful way to do this is have patients on board and accepting of the plan.”
That’s what Kirkpatrick was able to do with Poppe and Greenwood. The doctor helped Greenwood transition to methadone, which stays in her system longer and allowed her to drop her hydrocodone dose, she said.
Greenwood said the weaning process was difficult, but Kirkpatrick listened to her concerns and took them into account. She now is able to get out of the house without worrying about her medication wearing off.
“I’m just so grateful to him for hearing me and working with me,” Greenwood said. “I couldn’t have done this on other medication.”
Doctors shouldn’t be given a hard time for prescribing opioids, Greenwood said. Regulations are important, but patients can take opioids to manage pain without overdoing it.
“I believe there will always be abuse of drugs,” Greenwood said. “But that comes from people trying to reach a high, not people like me who are just trying to make it through the day.”