Over the past two years, Tanja Johnson has had an influx of patients who were cut off of opioids by their past providers.

Johnson, a nurse practitioner who specializes in chronic pain, said she thinks it’s because health care providers are afraid.

“Because they don’t want to be scrutinized for how they’re prescribing,” she said.

Since the U.S. Centers for Disease Control and Prevention released a report in 2016 recommending providers limit opioid prescriptions to 90 morphine milligram equivalents per day or less, chronic pain patients have felt betrayed.

The guidelines were meant to address the growing opioid epidemic, which was taking lives both through prescription medication and heroin, though it’s unknown how many of the prescription medications were legally obtained.

Several states adopted the recommendations into laws, including Colorado. While the morphine milligram equivalent limit is a recommendation, and not a mandate, some doctors might be misinterpreting the law to the detriment of patients, said Robert Valuck, executive director of the Colorado Consortium for Prescription Drug Abuse Prevention.

“Some doctors are afraid,” he said. “I don’t know that there’s an easy answer to it.”

Quality of life

Bill Blackburn, 72, served in the military and played contact sports when he was younger. His pain grew over time, and he’s now been dealing with it for about 20 years.

He has pain in his knees from hairline fractures, pain in his ankles and hips, and pain in his spine from degenerated and herniated discs.

He first got an opioid prescription from his doctor, before switching to a pain management program at Boulder Community Hospital.

“When I worked with doctors, my bias was to keep it as low as possible,” Blackburn said.

Over time, his prescription increased slowly to manage the increasing pain. He took short-acting opioids every four to six hours at about 10 milligrams each. His doctors would rotate different combinations, so he wouldn’t get used to anything, and he was doing pretty well.

He was still able to wrestle with his grandkids, exercised more often and maintained a garden in his 1-acre yard in Boulder. He even stacked blocks of wood in a circle as seating.

Then, the recommendations came out, and his doctors switched him to long-acting medications and lowered the number of pills he could take each day, saying the state wouldn’t allow them to prescribe up to six short-acting opioid pills per day.

The change has had a large effect on Blackburn’s quality of life.

“Over the past two years, my general mobility has deteriorated,” Blackburn said. “… I never thought I’d be where I am today. It’s depressing.”

Now, Blackburn can’t roughhouse with his grandkids or garden or use a treadmill. The majority of his day is now working on the computer and watching television.

Blackburn has tried everything, he said. He’s had several surgeries. He works out and takes vitamins. But the only thing that’s solved his pain problem is opioids.

“I think they come up with all these alternative solutions because they don’t want to admit that opioids are the answer,” he said.

Politicians are creating another problem while trying to solve the opioid crisis, he said.

“They’re taking away huge chunks of our lives,” Blackburn said.

Some people need opioids

Richard Dart, director of the Rocky Mountain Poison and Drug Center, said he has been “working on the opioid epidemic since before it was an epidemic.”

He said both sides are right. Doctors were prescribing too many opioids in the 1990s and the 2000s, but that was to the broad population.

“The catch is, when you apply a policy broadly there’s always the inadvertent victims,” he said.

“We have people who have been on opioids a long time whose physicians are saying to them: ‘I’m going to take you off, whether you want it or not,’” he said. “Evidence shows that when you do that, some people commit suicide.”

Opioids need to be prescribed for those who need them, he said, but that’s a difficult concept for some.

Rep. Jonathan Singer, D-Longmont, said it was “eye-opening” for him to start talking with chronic pain patients.

“I think there’s an impression that people struggling with chronic pain are pill shopping opioid junkies,” Singer said. “Sometimes, frankly, when you’re dealing with that much pain you can look pretty desperate, but that doesn’t mean that you’re struggling with a substance abuse disorder.”

Nurse practitioner Johnson, who works at a chronic pain clinic and provides care to those in the Boulder area, provided documents that show the amount of paperwork chronic pain patients must complete. They also complete urine tests and pill counts, and can be called in at random for testing, she said.

Johnson looks at all of that work and the checks, in addition to the daylong ups and downs patients endure as medication wears off, and asks: “Who would choose that life?”

People need to realize there is a difference between opioid addiction and opioid dependence, Johnson said. No chronic pain patient will ever feel “high,” unless they are overprescribed.

Opioids are pain blockers, so those with chronic pain don’t feel high when they them, Johnson said. Instead, she said, the drugs do what they’re supposed to, and attach to the receptors that feel pain.

“Our goal is to get their pain level to five or below out of 10,” she said, adding it never completely goes away, but is relieved enough so patients can live their lives and do things like drive, continue to work and buy groceries.

Abandonment

But people can develop a tolerance, Johnson said. Usually, doctors will just increase the dosage. Johnson, however, is considered a specialist, and thus will take more time to monitor patients to see when they’re developing a tolerance.

When it happens, she changes the medicine to a different opioid. With a change in the molecules they’re exposed to, the receptors in patients’ brains will become less “clogged” with the old medicine and the tolerance will subside, she said. .

With the new guidelines, Johnson started seeing patients who were cut off from doctors — after being prescribed 700 morphine milligram equivalentsor more of opioids. Johnson keeps all of her patients between 30 and 200 morphine milligram equivalents, unless they are in palliative care.

“What it showed me is that there were many providers that shouldn’t have been prescribing opioids,” she said. “… I didn’t know that providers were going that big.”

Dart, of the Rocky Mountain Poison and Drug Center, said that’s another issue with chronic pain patients: They take a lot of time.

“These days, a primary care doctor in particular does not have a lot of time,” he said.

A discussion on tapering takes at least 30 minutes, and can’t be handled in a regular visit, Dart said.

Because of this, and the new guidelines, some doctors are abandoning patients.

“We see a lot of stories of doctors saying, ‘This is too confusing and I’m discharging you,’” Dart said. “That’s actually illegal, it’s called patient abandonment. I don’t think most patients realize that, and they just suffer through.”

Abandonment for those using opioids can be deadly. Just as opioid addicts deal with life-threatening withdrawal symptoms when they try to quit, so do those dependent on opioids who are suddenly cut off or tapered too quickly.

Johnson said patients can suffer electrolyte imbalances, seizures, cardiac impacts, vomiting and more. This doesn’t mean they’re addicted, she said. Rather, it’s the brain reacting to a sudden imbalance as it loses the regular medication in its receptors.

Pendulum, swung too far

Singer said he and his colleagues are working on a few things at the Legislature to address this issue.

They’re inviting chronic pain patients to the table as they decide how to spend settlement money from pharmaceutical companies, if they receive any. The Colorado Consortium, run by Valuck, has committed to stepping up provider education on the guidelines.

Singer said legislators also are going to review the state’s Medicaid provider system’s rules to ensure they’re not working against chronic pain patients, because some insurance providers also are not allowing higher levels of opioid prescriptions. And they are thinking about possibly passing legislation that would resemble California’s Pain Patient’s Bill of Rights .

One of the main issues right now, Singer said, is “diagnosing the problem.”

“Doctors are misinterpreting what we’ve already passed, so passing a new law is not going to change that necessarily. It’s a look before you leap situation,” he said. “But there’s enough anecdotal situations where I’ve seen patients hurt that we need to have that conversation.”

It also is easy for people to see what’s happening nationally, with raids on medical providers, and be afraid to lose their licenses or worse, he said. Legislators need to examine whether it’s education, legislation or something else that’s needed, Singer said.

The recommendation isn’t to not prescribe opioids, Valuck said, but to monitor it more closely.

The pendulum has been swinging too far for a while now, he said. Doctors treated pain as the “fifth vital sign,” and were sold the concept of opioids by pharmaceutical companies. Now, Valuck said they can’t swing the other way and not prescribe the drug to those who need it.

To try to fix the issue, the state is mandating continuing education on chronic pain and signs of addiction, and the consortium is organizing programs to help doctors better understand what the law really says.