Kerry Heffner, a chronic pain patient from Austin, is doing what her doctors say she's supposed to do.
Managing lupus, fibromyalgia, osteoarthritis, scoliosis and herniated disks, she does the back exercises recommended by a physical therapist. She went to the gym for a while. She's had several surgeries, including joint replacements.
Nothing works as well as a high dose of opioid medications, including a fentanyl patch -- something she says her treatment team will no longer prescribe.
"They're wanting to do injections in my back, and I've had so many of those," she said in an interview. "You get discouraged."
As the national battle against opioid misuse and addiction has intensified, chronic pain patients in Arkansas say doctors have winnowed their access to opioid medications.
On lower doses, and without effective alternatives, everyday pain has led to suffering and feelings of despair, they say.
That's true for Heffner, who this year had her husband sign a "do not resuscitate" order in the event she has a medical emergency.
"You know, I'm 58, but I'm tired. And I'm tired of hurting," she said.
Opioid abuse and addiction caused more than 47,000 overdose deaths in 2017, according to National Institute on Drug Abuse data. Billions of federal dollars were allocated to the public health crisis this year alone.
As part of its response to a rising death toll, the federal Centers for Disease Control and Prevention enlisted experts to produce fresh guidelines in 2016 regarding chronic (long-term) use of opioid prescriptions.
Similar state-level work followed, including in Arkansas, via amendments to the Arkansas State Medical Board's regulations concerning malpractice. Rules that took effect in 2018 define "excessive" prescribing and outline requirements for documentation related to controlled-substance prescriptions.
While neither the federal recommendations nor Arkansas rules formally restricted what doctors are allowed to prescribe, patients say they've triggered a tectonic shift, in which physicians interpret dosage guidance as hard limits.
It's an overcorrection, they say, under which they've lost access to drugs that allowed for day-to-day functioning, such as being able to sit through a grandchild's ball game.
Maria Hill, whose opioid dosage began to be reduced in late 2016 or 2017, has now stopped going to Walmart -- she goes only to the retailer's smaller Neighborhood Markets -- because she's "tired by the time I get to the door."
"My pain is not being managed," said Hill, a 65-year-old breast cancer survivor from Mayflower.
"It wouldn't take just a huge increase in medication for me to able to get through a day ... but right now, that does not matter."
Arkansas providers with pain treatment expertise say the situation is complicated, emphasizing solid empirical reasoning behind recent approaches limiting access to prescription opioids.
Addiction is a concern and so is an "exponential" increase in mortality rates at higher dosages, Jefferson Regional Medical Center pain specialist Dr. Navdeep Dogra said.
The CDC's guidelines were "not just arbitrary. ... Even if you're responsible, accidents can occur. At the end of the day, I'd rather have you safe and alive," he says.
As for patients' reports of more limited access to medication, "I think, to a certain extent, it's true," Dogra said. Some of what the CDC has said "really wasn't supposed to be for people who were chronically on opioids."
Dr. Erika Petersen, a University of Arkansas for Medical Sciences neurosurgeon, says she hears the same kind of stories from chronic pain patients, who report having opioid doses trimmed, sometimes after years of therapy and with no history of problematic use.
Rapid step-downs in dosing can lead to long-lasting withdrawal effects -- depression, insomnia, increased pain -- as well as desperation, says Dr. Carlos Roman, a specialist in private practice who chairs the medical board's pain committee.
"It's not as simple as, 'hey, we're just going to cut these people off their drugs and everything's going to be fine.' It doesn't work that way," he says.
Public health and medical researchers have traced a surge in opioid prescribing back to the 1990s, related in part to trends that urged doctors to interpret patients' complaints of pain as the "fifth vital sign."
Dependence on prescription opioids fueled a corresponding uptick in use of street and black-market opioids, as well as their synthetic cousins, such as fentanyl and carfentanil.
By the 2010s, widespread opioid use and addiction reached a crisis point, prompting a multifront counterattack by providers, regulators and law enforcement agencies.
The 2016 CDC report, which reviewed a large body of evidence, outlined new parameters for prescribing opioids on a chronic basis. Experts concluded that more than 50 morphine milligram equivalents a day -- roughly, two 15-milligram extended-released oxycodone tablets -- increased overdose risks without offering pain-control benefits.
Regulators around the U.S., including in Mississippi, Kentucky and North Carolina, went on to formally adopt the CDC guidelines or use them to inform state-specific rules about the practice of medicine.
Kevin O'Dwyer, attorney for the Arkansas State Medical Board, says the group had discussed amending its prescribing guidelines well before the CDC report's release.
Previous language in Arkansas regulations dealing with prescribing was vague, he said. The medical board looked at making changes to offer doctors more direction on what might be considered "overprescribing," including specific dosages.
The board conducted more than five hours of public hearings on the matter in 2018. Transcripts from those hearings, which run to more than 200 pages, show patients being anxious about the treatment of their pain, doctors fretting about micromanagement and other issues.
"I don't want to see it go so far that, you know, you break your leg and you're given Tylenol or Advil, because that's great -- until it's you that breaks your leg," Roman said in the transcript.
The final rules updated the medical board's Regulation No. 2 to say that doctors should not prescribe more than 50 morphine milligram equivalents per day for chronic-pain patients without evidence such as imaging studies, alternative treatment records and risk factor assessments. There also are provisions for acute (short-term) pain.
O'Dwyer said the finalized regulation divided stakeholders, some of whom felt that it went too far, while others felt that it didn't go far enough.
"I'm not sure that any organization is particularly happy with this," he said. "We were wrestling with how not to cast too large of a net and catch everybody in this attempt to stop the overprescribing. And it's kind of impossible.
"What the medical board has stressed is, you should be prescribing the minimal amount of pain medication to deal with specific issues."
Regarding patients' reports of losing access to medication, O'Dwyer said it's possible that some doctors are using the Arkansas rules as an "easy explanation" to soften tough conversations about ending long-term opioid prescriptions.
Doctors also may phase out opioid use without explaining the legal scrutiny they're under to patients, he said. At least two Arkansas doctors have been indicted for running "pill mills" in the past three months.
Arkansas State Drug Director Kirk Lane agreed that a lack of communication between doctors and patients, particularly about the state-level actions, may be feeding patients' confusion and distress.
"You'll have some doctors that just say, 'I can't give you any more prescriptions because the government won't let me,'" he said.
"They hide behind what the intended purpose of the guidelines were, just to keep from changing."
'HELP THEM LIVE'
It's hard to quantify the effect of federal and state actions on individuals' treatment plans, but data from Arkansas' prescription drug monitoring program does show a measurable decline in recent opioid prescriptions.
The total number of opioid pills sold dropped by roughly 21% -- from 235 million to 186 million -- between 2016 and 2018, a report released this year said. Prescriptions also have become less potent, with total morphine milligram equivalents dispensed falling by almost a third between 2014 and 2019.
However, the state's overall prescription rate continues to outpace the national average, at 102.1 per 100 people compared with 58.7 per 100, according to the report. Some county rates -- 164.7 in Poinsett County and 145.4 in Lawrence County, both in northeast Arkansas -- are significantly higher.
Persistent high numbers may relate to education issues among Arkansas providers, says Dr. Nick Camp of Camp Interventional Pain Associates in Bentonville, who recently practiced in Missouri.
"It's very easy to just say, 'Hey, here's a script for hydrocodone. We'll treat your pain with this,'" he said. "I think that's something that's just a little more common in Arkansas than maybe, perhaps, in other states."
A cost factor also plays a part, he added. Many opioid-class medications are inexpensive, and Medicaid in Arkansas has restrictions on the circumstances in which the program pays for alternative treatments such as physical therapy.
Data from the monitoring program frustrate chronic pain patients in the state, who say the numbers are a blunt metric that conceals their experience and doesn't account for factors such as the state's high rate of disability.
Kaylee Jackson, a 55-year-old from Flippin whose chronic pain is related to autoimmune disease, two vehicular accidents and a workplace injury, said she understands the need to reduce prescribing rates, but argues that it shouldn't be a one-size-fits-all approach.
"If [patients] have every available test done on them, and they've had every other alternative that they can afford or can do, then the most reasonable thing is ... treat them, with humanity and compassion.
"Help them live a productive life," she said.
But overprescribing is a known danger to patients, providers and officials say. It's unlikely that prescribing practices will revert to what they were -- there's just "too much information" about effects of opioid overuse, O'Dwyer said.
Lane adds that it falls on authorities to make changes that help limit risk.
"We have to accept responsibility across the board for allowing it to continue to happen," he said.
"[But] I sympathize with the chronic-pain patients, because there's a lot of patients that need that medication, and we need to not put them in jeopardy."
'I DON'T FEEL HIGH'
Many chronic-pain patients are sympathetic to people with addictions. "They need just as much help as we do, and we're not trying to dismiss them at all," Jackson says. But the patients contend that their opioids experience fundamentally differs from that of addicts.
"For me, [addiction is] when it starts to run your life, you're watching the clock ... or you feel some kind of high from it," Heffner says. "I don't feel high when I take my medicine."
Dr. Michael Mancino, director of the UAMS Center for Addiction Research at its Psychiatric Research Institute, said there is, in fact, a meaningful difference between physical dependence and addiction, with the latter characterized by taking bigger doses than prescribed or by a route not prescribed.
"It's also a loss of control in terms of behaviors: Not being able to function, not going to work, going to work late, not taking your kids to school, doing dangerous things to get drugs," he said.
The subject is a source of unease among pain patients, sometimes compounded by their interactions in doctors' offices, where they are often made to sign a "pain contract" to receive opioids.
In those documents, patients agree to restrictions such as having their pills counted at each visit, taking random urine drug screens (a practice recommended by the CDC and the medical board) and filling their prescriptions only at designated pharmacies.
Some also report being denied treatment by primary-care providers or other specialists. According to one Quest Diagnostics survey, 81% of responding doctors said they are reluctant to accept into their practice a patient who has been prescribed opioids.
Lane cautions that in his view, a "stigma issue" may feed denial of addiction in some cases, making unhealthy usage harder to distinguish.
"Some people have severe pain problems, that they need opioids, and that's their reality," he says.
"But some people have convinced themselves that that's the only thing that works, and [they're] not going to try anything else. ... Whether they want to admit to it or not, they have a substance use disorder."
Camp also points out that patients' self-reported pain levels haven't tracked downward during opioids' rise, suggesting that opioids may not be as effective a treatment as some would like to believe.
"I think that the difficulty with opioids is that patients, maybe they've been on these medications for long periods of time, higher doses," he says.
"And they feel fine. They feel like nothing is problematic, but they go to sleep one night, and they don't wake up."
'NO EASY ANSWER'
In October, Jackson, Hill and Heffner joined speakers at the state Capitol in Little Rock for a Don't Punish Pain rally. Such gatherings, which spotlight issues that pain patients face, have been held periodically since last year.
Roughly 20 people attended the event, including some who used canes or walkers. Others had visible tremors as they stood at a lectern to speak, and Heffner wore a boot with surgical pins sticking out of her toes.
Describing their pain and fears of losing access to opioid therapy, a few speakers openly cried, wiping their eyes with tissues or stopping in the middle of their remarks, unable to continue.
"Sorry if my voice is shaking. It's called spasms, going up and down my back," one woman told the crowd. "I can't do what I used to. But I can still fight, and that's why I'm here."
Organizers at the rally encouraged attendees to keep up with online communities related to the issue, where they swap information about therapies, pain specialists, the medical board and how to engage with lawmakers.
The board, O'Dwyer said, is aware of the issue as the patients have described it, but says "there's no easy answer, there's no overnight answer.
"The one thing I don't think the pain patients understand -- every organization looking at this problem is concerned about them," he says. "It doesn't feel like it, but that's the reality of what is going on."
In the broader medical community, there has been some recent dialogue around opioid use and chronic pain treatment, including an opinion piece published by the CDC guidelines' authors that warned of the "misapplication" of the federal group's recommendations.
That includes "inflexible application of recommended dosage and duration thresholds and policies that encourage hard limits and abrupt tapering of drug dosages," the authors wrote in the New England Journal of Medicine this year, "resulting in sudden opioid discontinuation or dismissal of patients from a physician's practice."
Lane, who largely supports the medical board's recommendations, said he never wanted to see a "knee jerking" response from doctors. He has spoken to chronic-pain patients and told them he shares their interest in high-quality medical care.
"[But] as much as you have on the chronic-pain side, you have a lot of parents and family members who are afflicted by people going through addiction and death," he said.
For her part, pain-patient Hill said she wonders about a day when she may have to start sleeping in her living room because she can no longer climb the stairs.
"We're being told to alter our lives for our pain. There's something wrong with that," she said. "We know there's something out there that gave me a better quality of life."
SundayMonday on 12/01/2019