Jean Anderson, a pain patient and mental health advocate, and her son, who has a traumatic brain injury, meet Gov. Roy Cooper. Photo courtesy of Jean Anderson

By Taylor Knopf, North Carolina Health News

As people in the United States grasp for answers to a national epidemic of opioid overdoses, there’s been a culture shift in the discussion around pain.

Many say that the opioid crisis really took off in the 1990s once the assessment of a patient’s pain was promoted as being a “fifth vital sign,” to go along with pulse, temperature, respirations and blood pressure measurements. There was a growing expectation that no one should suffer from pain.

As pain assessment became more widely accepted, health care providers prescribed a record number of opioid pills.

But as the death toll has grown, headlines about opioids, heroin and overdose deaths have filled the media. Doctors and patients alike have become afraid of opioids, and there’s a general sense of: “If you touch these, you’ll become addicted.”

Attorneys general across the nation are suing pharmaceutical manufacturers alleging that the companies misrepresented how addictive their opioid products could be.

And the pendulum is starting to swing back the other way.

There’s been a crackdown on opioid prescriptions. There are pill take-back days to get extras out of medicine cabinets and off the streets.

And while most would agree it’s a good thing that a teen will no longer get a 30-day supply of Vicodin for a pulled wisdom tooth, chronic disease and pain patients believe they are getting the short end of the stick.

‘15-minute clock’

Some medical providers now refuse to prescribe opioids, which pain patients argue they need to accomplish their day-to-day activities. According to the North Carolina Medical Board, hundreds of providers in the state have stopped prescribing opioids altogether. Many cite fears that the medical board will investigate them.

There is a lingering concern that pain patients will become addicted to their medication. However, pain advocates will point out that according to the Substance Abuse and Mental Health Services Administration the percent of the American population with Substance Use Disorder (SUD) has not changed much in the last decade even as overdose deaths have soared.

But Steven Prakken, Duke Health pain specialist and psychiatrist, said he thinks the reason physicians don’t want to take on pain patients is a little more insidious than even that.

“They don’t want to take the time,” he said. “And they are refusing to write anything that has to do with opioids so they don’t have to be inside this topic.”

He said the present-day medical system – which requires physicians to stay on a “15-minute clock” –  is partly to blame.

“In that 15 minutes, you have to take care of diabetes, hypertension and chronic pain,” Prakken said. “That’s impossible!”

“So I don’t blame them for taking an easy out because they have productivity goals they have to meet. Inside the large systems … you can’t take care of chronic pain very well.”

In his paper, “Opioid Crisis: No Easy Fix to Its Social and Economic Determinants,” University of North Carolina Chapel Hill researcher Nabarun Dasgupta also blamed today’s modern health care system for the overprescribing issue.

“Over-reliance on opioid medications is emblematic of a health care system that incentivizes quick, simplistic answers to complex physical and mental health needs,” he wrote.

Treating chronic illnesses can be complicated. Each body responds differently to pain management, and a large number of patients suffer from co-occurring disorders.

There’s a psychiatric component to pain too. Many people with chronic pain also have depression.

“The intersection of social disadvantage, isolation, and pain requires meaningful clinical attention that is difficult to deliver in high-throughput primary care,” Dasgupta wrote.

“Some providers struggle with addressing complex, chronic medical conditions requiring regular follow-up, especially with limited recourse to nonpharmacological alternatives and the predominantly urban concentration of specialty services.”

Right now, an emerging medical response to chronic pain is to encourage alternatives to opioids, such as Tylenol, cognitive behavioral therapy, physical and massage therapy, or acupuncture.

And there are a host of studies showing promise for non-pharmacological pain treatments.

For example, a 2016 randomized clinical trial found that cognitive behavioral therapy can be successful in treating chronic lower back pain. And some new, small-scale research indicates that medical cannabis could be effective for some types of pain.

However, it can be difficult to get these treatments consistently covered by insurance. Medicare, for instance, will only cover“medically necessary” outpatient physical and occupational therapy. But it does not cover acupuncture or massage therapy.

As Dasgupta pointed out, these services are primarily located in larger cities, which leaves rural residents at a disadvantage.

There is conflicting research showing that opioids could make a person more sensitive to pain over time. This is called opioid-induced hyperalgesia, and there is research to support it in some patients, but researchers note more clinical studies are needed.

Despite newer choices, Prakken said most of his patients have tried everything with only moderate to no success.

“They have been through the list,” he said.

All about function

For Prakken, successfully treating chronic pain is about function.

He gave a hypothetical situation: He might have a patient who can only tolerate walking for 15-minute stints on pain medication. But what if that patient is taken off the medication and can only walk for three minutes, instead of spending 90 percent of the time in bed?

“And they’ve already had three surgeries for this,” he explained. “And they’ve had all the injections one can get. And their insurance won’t let them have chronic physical therapy or acupuncture.”

Prakken said he’s clear with patients that he cannot stop all their pain. At best, he said he can help manage about between 30 to 50 percent of it.

“You have to be functioning better for me to have you on these meds,” he said. “And if I give you opioids and your function doesn’t increase at all, that’s not an optimal outcome.”

For pain patient Jean Andersen from Stanfield, that ability to function is key. She wants to continue caring for her son with a traumatic brain injury and being a mental health advocate. Andersen gardens, tends to her chickens, and spends time with family, and says the fentanyl patch that she wears enables her to do these things.

“Nobody ever expects to be completely without pain,” she said. “It’s a careful calculation. You want to be functional, but not affected in a negative way.”

She’s been on pain medication for decades due to an autoimmune disease, frequent joint dislocations and spinal arthritis. But when attention turned to opioids a couple years ago, her pain clinic doctor said her two-day patch would now need to stretch to three days.

At another visit, the doctor cut the dosage of her patch.

Andersen said that for the first day or two, she would be OK. But on the third day, she would start to feel withdrawal symptoms and even considered pulling her powered wheelchair out of the basement. It became harder to care for her adult son and she said she had to lay down more frequently.

“I’m angry,” she said. “Something I’m not a part of is controlling my way of life,” she said of the skyrocketing rate of opioid overdoses and the responses of lawmakers and the medical establishment.

“I love being with my family. And I resent the fact that my ability to care for my son is dependent on decisions someone else makes.”

Luckily for Andersen, her doctor realized these changes were hurting her.

“I’m one of the rare people that had some medication returned to me because the clinical outcome was bad,” she said.

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