Liz O. Baylen/Los Angeles Times/TNSOxyContin 80 mg pills, photographed in the LA Times studio in 2013.

An Oregon proposal to expand alternative treatments for certain chronic pain conditions while limiting the use of opioids has moved forward with minimal changes, despite outcries from chronic pain patients and sharp criticism from pain experts across the country.

The state’s Chronic Pain Task Force, an ad hoc committee providing recommendations on treatments for chronic pain under Oregon’s Medicaid program, backed a proposal Wednesday to provide coverage for five chronic pain conditions currently not covered by the Oregon Health Plan.

That would allow patients to receive services such as physical therapy, acupuncture and other types of treatment. Opioids would be covered in limited doses for some of the chronic pain conditions, but not for fibromyalgia or centralized pain syndrome, a central pain processing disorder that can heighten the response to painful stimuli and produce painful responses to normally nonpainful stimuli. The task force concluded that opioids are not beneficial and can be harmful for those conditions.

Patients who are already taking doses above the opioid limits would be required to begin a taper of their medications at rate determined in conjunction with their doctor. Patients with fibromyalgia or centralized pain syndrome would be required to taper off opioids completely.

Overprescribing of prescription opioids has been blamed for the ongoing overdose epidemic nationwide. With other states wrestling with the same issues, Oregon’s proposal has garnered national attention and concern.

“This is basically more extreme and draconian than any approach in the country. It goes against all of the guidelines,” said Kate Nicholson, a civil rights attorney from Colorado and a chronic pain advocate. “And importantly, it does so without regard for any attempt to measure potential harms or benefits to patients.”

The proposal is the second try by the task force to craft the chronic pain coverage guidelines. A previous proposal would have limited opioid coverage to 90 days and required patients to taper off painkillers within a year. After hearing from patients and providers, Oregon Health Authority staff reworked the proposal to soften the language and provide patients and their doctors more flexibility in the rate of tapering.

“We at OHA believe that health care delivery is really dependent on the trusting relationship between a patient and provider,” Dr. Dana Hargunani, chief medical officer at OHA, told the task force. “All of the proposal elements, particularly addressing the opioid tapers … including the timelines, the rates and the ultimate success in getting to zero, are intended to be flexible and to meet individual patient needs based on the patient and doctor relationship.”

Hargunani said the revised proposal recognizes that for some patients, long-term opioids can be an appropriate treatment and would not require a full taper off the drugs. For those for whom opioids are not appropriate, the ultimate goal would be a taper to zero.

“This is intended to be a goalpost and to help providers engage with their patients on the discussion of tapers,” she said. “It’s intended to be flexible and individualized.”

Oregon Health Authority officials estimated that about 67,400 people would gain coverage to alternative pain treatments under the proposal and that between 600 to 1,200 patients would need to have their opioid treatments re-evaluated by their providers.

The Oregon proposal, however, is not intended to be a general guideline on opioids for chronic pain, and task force members stressed that it would not apply to chronic pain patients across the board.

“These were things that were not covered at all,” said Amber Rose Dullea, a fibromyalgia patient and member of the task force. “So if somebody is seeing a doctor under the Oregon Health Plan and they’ve been getting opioids, this line would not have any effect, because if they had gone to a practitioner prior, they wouldn’t have gotten any treatment.”

Chronic pain patients had flooded previous committee meetings providing heart-wrenching testimony about their conditions and the fear of losing pain relief going forward. At Thursday’s meeting, they relied more on expert testimony, reading letters from academics and clinicians to state their case.

That included a letter signed by six of the leading pain experts in the country stating the task force would require changes “far more aggressive than any existing guideline or any other current law or mandate, and it does so without evidence or regard to the potential harm or benefit to patients.”

A combined statement from the Oregon Medical Association and the American Medical Association called for modifications including language stating that “neither patients nor physicians should ever be forced into nonconsensual tapering protocols.”

The task force considered a review of the evidence supporting the safety and effectiveness of tapering patients, conducted by researchers from Oregon Health & Science University. That review found there was little evidence to suggest that tapering patients off opioids improved pain, functioning or quality of life. Similarly, there was little information about the potential risks of weaning patients off opioids.

The Oregon debate is in many ways a microcosm of the difficulties faced by medical experts trying to write opioid guidelines that discourage overprescribing while protecting patients with chronic pain needing ongoing relief.

“There is no demarcation or line in the sand where this dose of opioids is unsafe and this dose of opioids is safe,” said Dr. Sean Mackey, a pain medicine specialist at Stanford University. “So what people have unfortunately done is, they have looked at the data, which clearly shows that there is an increasing risk with increasing doses, and they’ve drawn a land in the sand where we’re going to call this a threshold.”

The vast majority of people who die from opioids are actually dying at lower doses, he said, because most people are on lower doses. And there is little evidence to say whether patients on high doses of opioids are more at risk staying on those high doses or tapering down.

For many patients, a taper, particularly a forced taper, leads to greater problems and can increase the risk of adverse events or death.

“We believe there is a big difference between voluntary and forced tapering, and there are huge unintended consequences in this space,” Mackey said.

Dr. Stefan Kertesz, a professor of preventive medicine at the University of Alabama at Birmingham, said the scientific community is split on what to do with patients on higher doses. Some argue there’s a safety risk that can be mitigated by bringing everybody down, while others argue that hasn’t been proven even for patients on doses that no doctor would now prescribe for them.

“The problem is you cannot always walk backwards on the path you walked forward on,” he said. Tapering can be traumatizing for the patient and can destabilize their physical and mental health. Both Mackey and Kertesz suggest that Oregon should first try voluntary tapers with patients willing to do so, and then study the impact on those patients. Similar studies are currently underway in other parts of the country, including at Stanford.

“We’re getting a lot of people right now who are saying, if you can support me, if you can help me, I’ll come down,” Mackey said. “I think (Oregon) should start with a voluntary program before they go and run a huge social experiment on their population without really knowing the consequences.”

The proposal now goes to another committee for consideration at its January meeting, and if approved will go to the full Health Evidence Review Commission for consideration as early as March. If the commission agrees, the new rules would go into effect on Jan. 1, 2020.

Those deliberations will be closely watched across the country, as many chronic pain patients and their advocates fear other jurisdictions could take the same approach.

“I see Oregon as one of the more remarkable examples of a potentially extreme approach,” Kertesz said. “My concern has been if that approach takes root, in the absence of serious data regarding its impact on patients, it could be adopted by other states.”

— Reporter: 541-633-2162, mhawryluk@bendbulletin.com