Shari Rudavsky | IndyStar

Kelly Wilkinson, kelly.wilkinson@indystar.com

About two years ago, Johnna Magers' health insurer abruptly announced it would stop paying for the pain pills that quelled her back pain and made the difference between her working and being on disability.

“My diagnosis hadn’t changed, the way they did prior authorization didn’t change, nothing had changed,” said Magers, an Indianapolis resident. “Out of the blue, they said, 'Hey, we can’t cover this for you.' ”

The Centers for Disease Control and Prevention was then encouraging doctors to decrease opioid prescribing, which had contributed to an epidemic of addiction.

But for Magers and countless others with chronic pain, the response to those 2016 CDC guidelines meant trouble.

Kelly Wilkinson/IndyStar

Now, many in the medical profession say the pendulum swung too far. A panel of 14 experts, led by an Indiana University School of Medicine professor, earlier this spring advocated in an an article published in Pain Medicine for rolling back some of the practices and policies that arose in the wake of the CDC guidelines.

A few weeks later, the experts behind the guidelines published a follow-up paper, citing the findings of the panel led by Dr. Kurt Kroenke, a research scientist at the Regenstrief Institute and an IU professor of medicine. In this New England Journal of Medicine editorial, the authors argue that many of the responses that cited the guidelines were inconsistent with those guidelines.

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“There are things that are being done that may be attributed to the guidelines, but that actually go beyond what the guidelines recommend,” said Dr. Roger Chou, one of the authors of the original and current papers. “It’s an overenthusiastic application and trying to oversimplify what the guidelines were intended to do.”

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Opioid use goes from all to nothing

The 2016 CDC guidelines galvanized response in a health care community that had already been grappling with its role in the drug crisis. Nudged by pharmaceutical companies eager to sell their product, doctors had been generous with their prescription pads for more than a decade, an attitude that had opened the door to an epidemic of overuse.

As the overdoses piled up, the pendulum swung from an "all" approach to a "nothing" approach. The CDC treatise on opioids that appeared three years ago encouraged doctors to change their habits and sparked a rapid decline in legal opioid prescribing.

Unable to fill her prescription through insurance, Magers picked up an extra shift as a server in a restaurant to pay for her pain pills with cash. Since then, she has managed to pay out-of-pocket for the medication.

When she started to experience breakthrough pain about six months ago, she held out little hope that her doctor would increase her dose, afraid that writing a prescription for more medicine could go against the guidelines and land him in trouble. Instead, she just soldiered through.

Kelly Wilkinson/IndyStar

While the paper Kroenke co-authored was not the only one that informed the CDC group’s most recent paper, Chou calls it “one of the more articulate” discussions of the confusion that has resulted from the 2016 guidelines.

Revisiting the opioid guidelines

As a doctor with many chronic pain patients, Kroenke witnessed firsthand how the over-reaction of legislatures, insurers and others affected them. Doctors rushed to comply, afraid themselves that what was once considered standard practice might now count as over-prescribing.

Meanwhile the 10 to 15 million Americans who rely on opioids to control their chronic pain – and who are not contributing to the drug epidemic – were caught in the cross fire, Kroenke said. Many felt abandoned by the medical profession. Chronic pain is the second most common cause of disability globally, after mental disorders.

Despite common origin stories, such as "I became addicted after having my wisdom teeth pulled," only 37 percent of adults who misused opioids had a prescription, according to the National Survey on Drug Use and Health.

Still, Kroenke and the panel did not dispute that opioid prescribing was at one point rampant and excessive. Taking a more measured approach to starting patients on opioids makes sense, he said, as does exploring alternatives for those with chronic pain and trying to use lower doses when possible.

And, then, he said, there’s the possibility of reconsidering some of the most draconian responses to using opioids.

“Probably we need to revisit these fairly stringent reactions,” Kroenke said. “If we go back to a very more curtailed use of appropriate opiates, I think the clinical system has now been sensitized to following patients with this and watching for misuse.”

As Magers learned, some health system leaders and payers have used the CDC guidelines to justify policies that prohibit prescribing opioids above a certain amount. What the guidelines actually say is to be cautious when prescribing doses above those cut-offs, said Chou, a professor of medicine at Oregon Health and Science University.

One insurer even contacted Chou, telling him that he could not place a patient on too high a dose. The insurer cited the guidelines Chou himself wrote as evidence for the assertion that he had violated the recommendation.

Some health care providers or facilities have implemented policies that prohibit the use of opioids for certain conditions, such as chronic pain, or even at all. Again, the guidelines recommend neither of those, Chou said. Instead, they say only that opioids should not be used as first-line therapy.

“The guideline is not policy. It was not (meant) to be policy. It was never meant to be policy,” Chou said. “The guideline was meant to help physicians provide patient care, and this is the challenge that happens when people try to turn practice guidelines which are complicated into policy which is very black and white.”

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Still, some say, the medical profession made some mistakes that could be remedied to help keep the prescribing of opioids to a minimum.

About two decades ago, along with the advent of new drugs to treat pain, the medical field started viewing pain as a fifth vital sign, along with blood pressure, heart rate, respiratory rate and temperature.

Many patients first encountered this new thinking in the form of charts that asked them to point to a range of smiley to frowning faces to indicate where their pain fell on the scale. This transformation of pain into a vital sign inadvertently contributed to the problem of doctors over-prescribing, said Dr. Dominic Gaziano, director of the Body and Mind Medical Center in Chicago and author of "Well Now! Today’s Comprehensive Health and Wellness Guide."

“Pain is not an objective vital sign but a subjective symptom that is hard to quantify,” he said. “Experienced doctors and nurses need to look at pain as a symptom and assess how to treat it. The danger is that treating pain as a vital sign might cause the patient to exaggerate pain symptoms.”

Did the guidelines go too far?

While other pain patients may struggle to find a doctor who believes and treats their pain, Magers considers herself fortunate to have a provider who trusts her.

Three times she has tried to wean herself off the medicine, but the pain keeps sending her back. Finally her doctor, a pain management specialist, told her she would likely need the medicine to calm her pain for the rest of her life.

Kelly Wilkinson/IndyStar

Before she developed back pain suddenly at age 35, she loved to hike and ride horses. The pain rendered her unable to do much other than work, fall into bed and care for her son. Eventually a doctor diagnosed her with disc issues and said there was not much that could be done other than taking medication to address the pain.

She can now work two jobs, including one as a surgical dental assistant that requires her to stand for most of the day. And she advocates for others in her shoes, serving as Indiana organizer for Don’t Punish Pain Rally, an organization that holds regular events to raise awareness about the needs of chronic-pain patients.

Any time the government gets involved in medicine, it's a bad thing. Johnna Magers, chronic-pain patient

Magers is also acutely aware that the current environment could put her doctor and others sympathetic to pain patients in a precarious position.

“We want to see legislation protect our doctors. Any time the government gets involved in medicine, it’s a bad thing,” said Magers, who greeted the latest missive from the CDC panel with delight. “They’re admitting they were wrong. ... They’re admitting that the medical board and the DEA (Drug Enforcement Agency) are taking it too far.”

Finding the perfect balance between the needs of patients like Magers and ensuring that others prescribed opioids do not slip into addiction presents an ongoing challenge for the medical field, experts agree.

Solving that conundrum requires recognizing that several different patient populations exist, Chou said. There are chronic pain patients not yet on opioids who would likely experience little benefit from opioids. Then there are the ones like Magers who have been on opioids from years without transitioning to addiction.

No easy answer exists, Chou said.

“This is a complex area where we have to individualize patient care, and I think people have been using policy as a blunt tool when in many cases, it requires some more nuance than that,” he said. "I think we also now have the recognition that you can’t just implement a bunch of things and fix this problem quickly or overnight, which I think some policy makers were hoping for."