Give or take a few breaks, Kelly Howard has been on opioids for 17 years. She suffers from severe nerve pain and says opioids have enabled her to have a life.
“I was able to function. Take care of the house. Take care of the animals. Still get some exercise. Sleep,” she said, in an interview from her home in the small Willamette Valley town of Veneta.
But a year and a half ago, her doctor retired. It was at the peak of the opioid crisis and her new doctor was anxious to follow Oregon’s stringent new opioid prescribing guidelines.
The Oregon Health Plan was asking doctors to taper patients off opioids within a year. Howard's doctor tried to do it in three months and Howard said it was devastating.
“So many things just got dropped by the wayside. Because I just couldn’t do things. I couldn’t take care of the house. I could barely take care of myself,” she said.
Howard said she briefly thought about suicide. She understands opioids have wreaked havoc. About 130 Americans die every day from opioid overdoses. But she said people like her need them long-term – just like heart disease patients need statins or beta-blockers long-term.
“We’re stigmatized,” said Howard. “We’re accused of being addicts, of just wanting to get high, which we don’t. With causing all of the problems of illegal drugs, which is completely not true. We are vilified.”
An estimated 24,000 Oregonians have pain reliever use disorder – that's equivalent to the population of the Oregon city of Newberg. And now they've attracted some powerful help in the form of Human Rights Watch. The international nonprofit, better known for tracking political corruption and child soldiers, recently wrote to Oregon Gov. Kate Brown expressing concern about the state's opioid tapering proposals.
Human Rights Watch researcher Laura Mills said it is possible to taper how much a patient uses opioids, but it has to be done carefully. Otherwise, it can cause some patients to spiral out of control.
Related: VR Gives Oregon Patients And Doctors An Alternative To Opioids
“When a patient comes to a doctor and says: ‘I want to reduce my dose,’ or agrees with the doctor that is the best decision, those can be successful and studies show that. The problem … is with involuntary dose reductions. When the doctor just says: ‘That’s it. I’m cutting you off.’ Because it really, really destabilizes those patients,” said Mills.
Studies show they’re more likely to consider suicide, lose a job or start looking for other drugs to treat pain — such as heroin.
The Centers for Disease Control recently published a report in the New England Journal of Medicine saying tapering puts patients at risk of withdrawal symptoms, increased pain and psychological problems. The U.S. Food and Drug Administration issued a similar safety announcement on tapering this spring.
In response, the Oregon Health Authority removed its opioid tapering requirement this month. Dr. Dana Hargunani, OHA's chief medical officer, said they're responding to new research.
“The evidence continues to move along and we need to make sure that our proposals and decisions are updated based on the best evidence we have,” said Hargunani.
Back in Veneta, Kelly Howard is angry.
“I’m mad at the entire country. But I’m particularly mad at the state because Oregon has decided they want to be the opioid-free state. They want to be first in the forefront in the battle against opioids.”
Back in 2016, Oregon started to enforce its tapering program. At the same time, state health officials also broke ground by offering Oregon Health Plan patients coverage for alternative treatments like acupuncture.
Howard said she’s tried everything from exercise to healthy eating, to prescription drugs like Xanax and Paxil.
But nothing has worked as well as opioids.
So she shopped for a doctor willing to prescribe. She’s on a lower dose now but can function again.
“On a reduced scale I can work on my garden a little bit. Work on the yard. Try to work on the house. Like I said, I have to really try to predict the future … ‘If I do this today, I’ll be in this much more pain tomorrow. And I don’t have so many pain medications, can I stretch them out?’” said Howard.
Oregon’s ‘Opioid Tapering Guideline Task Force’ meets at the State Office Building, 800 NE Oregon Street, Portland, 1:30 pm Thursday to figure out where to go from here.
Editor's note: A previous version of this story incorrectly attributed a quote given by Laura Mills with Human Rights Watch. OPB regrets the error.