Abandoned to Pain: Has Opioid Access Become Too Restrictive?

John Watson


September 28, 2018

The Opioid Epidemic's Other Casualties

Teresa Brewer's voice trembles with pain over the phone from her Arkansas home, the result of retroperitoneal fibrosis first diagnosed in 2003 and complications from subsequent failed surgeries. She was recalling the day last March when she learned that her long-term opioid prescription—the only thing separating her from agony—would be tapered down.

"My doctor, I thought he was going to cry when he told me he's going to have to reduce me off on my pain meds," she said.

Until that day, Brewer had been treated with methadone at increasing dosages that eventually reached 100 mg/day. Even that proved insufficient, but she got by, turned over unused scripts, followed every direction she was given. Then she learned that the 100 mg would become 30 mg. The reduced dosage had no impact on her life, so she opted to be taken off opioids completely.

"Now every time I take a step, it sends pain to my body," she said.

Brewer's doctor sent her medical records to 17 pain specialists, all of whom have refused to see her. Some cited a lack of capacity; there are countless cases like hers these days. Others gave no clear reason at all.

Brewer is just one of an estimated 100 million people in the United States suffering with chronic pain,[1] but her story is now distressingly common. On internet forums, in courtrooms, at meetings before the US Food and Drug Administration (FDA), patients with chronic and intractable pain who have abruptly been phased off opioid therapies they've taken for years, sometimes decades, speak of feeling abandoned. Some have taken their own lives rather than continue suffering.

Their experiences, and those of clinicians who have paid steep prices for continuing to treat them, are causing the medical community to ask whether the fight against opioid addiction has come at the cost of some of the most vulnerable patients.

The Crackdown

The opioid epidemic is now considered the worst drug crisis in American history. There is plenty of culpability to spread around. Purdue Pharma's highly criticized marketing of OxyContin is thought to have lit the flame of the crisis in the 1990s,[2] with the diversion and improper use of prescription opioids acting as the accelerant.[3] For years, federal and state authorities were accused of neglecting the issue, until it exploded into a full-blown public health emergency.

There is no longer a concern over inaction. Instead, it surrounds the direction of recent antiopioid efforts, which appear primarily aimed not at illicit substances like heroin, but at the medical community itself. In early 2018 Attorney General Jeff Sessions announced a "surge" directed against pharmacies and physicians considered oversuppliers and the establishment of a task force directed at manufacturers and distributors. In March, President Donald Trump introduced a goal of cutting opioid prescription by a third within 3 years.

Evidence suggests that these new policies may be both belated and misdirected. While opioid prescriptions rose precipitously until 2011, their numbers fell by 29% between then and 2017.[4] A systematic review of 80,000 participants found that only 4.5% of those treated with long-term opioids for chronic pain go on to become addicted, which may be an overestimation as it included patients with prior substance abuse history.[5] Prescription opioid misuse in adults and children is at its lowest levels in nearly 2 decades.[6] And most crucially, tighter prescribing restrictions are believed by some to actually increase the use of illicit drugs.[7]

A Recommendation That Became a Mandate

In 2016, the Centers for Disease Control and Prevention (CDC) issued new guideline for prescribing opioids for chronic pain.[8] They cautioned against dosages higher than the equivalent of 90 mg/day of morphine, a threshold that an estimated 1.6 million Medicare beneficiaries had met or exceeded that year.[9]

According to an analysis published this month in the Annals of Internal Medicine,[10] between the guideline's March 2016 release and December 2017, there were 14.2 million fewer opioid prescriptions dispensed (1.3 million of which were high-dose) and nearly 1.1 million fewer patients received concurrent benzodiazepines and opioids prescriptions, a significant risk factor for overdose death. The study was unable to look at patients' indications, and it not known how many were receiving treatment for acute or chronic pain.

According to the study's co-author, Gery P. Guy Jr., PhD, MPH, a health economist in the CDC's Division of Unintentional Injury Prevention in Atlanta, Georgia, there have been several efforts to communicate the risks of misapplying the original guideline. He cited a 2017 commentary[11] emphasizing that it "does not provide support for involuntary or precipitous tapering, and that such practice can be associated with withdrawal symptoms, damage to the clinician-patient relationship, and patients obtaining opioids from other sources," and advising clinicians to "not abandon patients in chronic pain."

He added that the CDC is working with partners like Centers for Medicare & Medicaid Services (CMS) to ensure the guideline is implemented as intended, advice that is reflected in CMS's 2019 Medicare Call Letter outlining new policies.[12]

Yet it is not clear whether the various stakeholders are following suit. CMS announced that beginning in 2019 they will implement "hard safety edits" when prescriptions exceed the 90-mg/day threshold, at which point prescribers will need to provide a rationale for scripts to be filled.[13] Pharmacies have already begun to phase out opioid prescriptions above a certain level.[14] States have moved to push the guidelines even farther, most controversially in Oregon, where regulators are trying to entirely eliminate Medicaid coverage for opioids in chronic pain patients.[15]

This has given rise to criticisms that that nuance of the CDC's original guideline has been lost in its translation into a blunt legal mandate. Writing this July in the journal Addiction, Stefan G. Kertesz, MD, and Adam J. Gordon, MD, criticized new policies that they say have "weaponized" the CDC's guidelines and come primarily from individuals and agencies ill-equipped to objectively and responsibly evaluate this complex issue. As a result, they warn that they have, "incentivized involuntary termination of opioids in otherwise stable patients, with resultant reports of harm."[16]

Tapered and Abandoned

It was around the time of the CDC guidelines that Robert Rose Jr made a visit to his local US Department of Veterans Affairs (VA) facility, where he was informed of a new policy that would require the tapering of his medication to zero.

Despite nearly two decades of successful, uncomplicated treatment with long-term opioids for chronic pain resulting from multiple injuries suffered during his career in the Marine Corps, which eventually led to his being granted a medical discharge in 1994, he was accused of breaking the pain contract for reasons that are still unclear. He says that he's passed every surprise drug screen he's been given. Later, a VA psychiatrist declared him as having opioid-use disorder (OUD) and recommended Suboxone.

There was a bitter irony to this. In addition to his career as an educator, Rose Jr had served as a drug and alcohol counselor in the court system. Though the pain he experienced often left him crawling to his bathroom, his work as a counselor had raised his awareness of the risks inherent in opioids. He put off their use and instead sought help with a variety of alternative treatments like chiropracty, pool therapy, aromatherapy, all to no avail. He finally relented and received a prescription for hydrocodone.

"It was a miracle. I didn't get high, didn't get euphoric, but I was able to get up off the floor and continue to work eventually."

Now suddenly returned to the pain that rendered his life unmanageable so many years ago, Rose Jr is adamant that he will not seek illicit opioids on the street or take his own life.

"I'd rather live in pure hell and torture from being denied pain meds than to dishonor God, the Marine Corps, or law enforcement," he says.

Rose Jr is active in online groups for other military veterans with chronic pain similarly afflicted by the VA's policies, and aware of the statistics. The risk for suicide is already doubled in chronic pain patients when compared with control patients,[17] and veterans may be particularly vulnerable. A study of 509 Veterans Health Administration patients discontinued from long-term opioid therapy reported a 12% rate of suicidal ideation and suicidal self-directed violence.[18] The VA's own statistics released in June of this year show that veteran suicide rates are 2.1 times the national average.[19]

"The VA blames veterans' access to weapons and mental illness," he says. "That is really wrong because now that I have OUD in my records, if I commit suicide it's not because of pain; it's because I suffer from a mental illness. The VA is very good at covering up their mistakes, and that's what we are—their mistakes."

From Patients, to Potential Addicts

Chronic pain has a well-established history of stigmatization going back at least to the 19th century.[20] The problem was exacerbated by the advent of objective technologies like the x-ray. If it couldn't be seen and measured, it wasn't taken seriously.

According to Kristen Ogden, an advocate for intractable pain patients, it's a problem that endures to this day. It requires such patients, like her husband Louis, to make a case not only for their clinical condition, but also for their character.

"At a certain point I started going with my husband to every appointment, because I realized that at least by showing up, I could give him somewhat more credibility with doctors," she explained. "I was there to say, 'This is real. It's not malingering, or made up, or drug seeking.' And it's pretty horrible when you come to the point in your life where you realize you have to do that, or else people will be dismissed."

With the current atmosphere surrounding prescription opioids, this stigmatization now seems to apply to even those who have been through verified medical traumas.

On paper, Bailey Parker meets all of these criteria. After a car accident fractured her spine, a prescription opioid temporarily halted the pain but was soon retracted. The pain got worse after a double-level cervical fusion she underwent failed, but a consistent prescription was impossible to obtain in her small Colorado town.

"I was told, 'If it's narcotics you are looking for, we just don't do that here' or 'We can't handle the long-term care of those medications," Parker said. "I feel as if I am being punished for being disabled."

She finally found a pain specialist who was willing to prescribe to her a combination of OxyContin, Lorzone, and Lyrica. But their offices are in Denver, a 6-hour drive from her home. As relieved as she is to have found a prescriber, it's coarsened her view of the medical establishment.

"Driving that far in the state that I am in every month is an unrealistic expectation for doctors to put on me," she said. "I feel desperate and that doctors are merely businessmen that do not want to get in trouble. The Hippocratic Oath has been lost."

Caught Between Your Oath and Prison

The Hippocratic Oath is something that's on the mind of Mark Ibsen, MD, quite a lot these days.

In 2010, Ibsen opened an urgent care facility in Helena, Montana, after roughly 30 years of practicing hospital-based emergency medicine. A couple of years later, he noticed an alarming trend of chronic pain patients coming to him after being dropped by their doctors or being refused renewal of existing prescriptions by new physicians.

Ibsen began writing prescriptions for some of these patients. He saw it as an opportunity to fulfill his Hippocratic Oath, treating patients "drowning in acute withdrawal and acute pain."

He assumed himself to be acting as a stopgap until the patients could find new practitioners to manage their pain. Only that moment never arose. What started as an ethical conundrum soon turned into a mission.

"As a society, we made a commitment to these patients. Maybe we didn't know we were making a commitment, but if you start somebody on pain pills for their chronic palliative care, you can't just suddenly drop them. It's like dropping insulin from diabetics."

Everything changed in 2013 when a complaint was made to the state medical board by a former chiropractor on his staff, who he says was let go after she made derogatory comments toward chronic pain patients within their earshot. What followed was, by his own description, a "rabbit hole of a nightmare."

There were spot inspections, visits by the Drug Enforcement Administration (DEA), and endless hearings. The surrounding media coverage became a catch-22 for Ibsen. Local doctors alarmed by his experience began to phase out opioid prescriptions, sending more patients into his office to seek treatment. His Hippocratic Oath had become a weight dragging him further into peril.

Ibsen obtained 150 new patients, 80% of whom he said were successfully weaned off opioids. But when another local practitioner, Chris Christensen, was charged by the DEA, Ibsen had enough. He decided to protect himself by phasing out prescriptions in the fall of 2015.

Tragedy soon struck when one of his patients, unable to find another provider, took his own life, stunning Ibsen. He says he's lost two more patients to suicide and three more to related circumstances, like complications of turning to alcohol to dull their pain.

"The irony of it is that the patients that were able to stay with me were able to stay alive, and the patients who were not able to stay with me died."

Ibsen's license was suspended and then reinstated 36 hours later. But the door has been left open for the state to bring charges again. He shuttered his practice in 2015.

The Tension Between Law and Medicine

There are many cases like Ibsen's, such as that of prominent pain specialist Forest Tennant, MD, who closed his own California practice this year after increasing DEA scrutiny as more patients were drawn to his clinic from across the country.

Kristen Ogden's husband was one of Tennant's patients, and she volunteered in the doctor's office. The Ogdens are based in Virginia, but the flight to California was a necessity if he was to receive treatment, a high dosage of opioids but one that has remained steady for 7 years now.

"If somebody flies across the country to see a prominent heart specialist, nobody's going to question that," she said. "But if you fly across the country to see the world's most knowledgeable pain specialist?"

The pressure is only increasing. In what is described as the largest such enforcement action in Department of Justice history, over 150 healthcare professionals were charged this year with fraud and illegal opioid prescribing.[21]

If you are in one of the dwindling practices offering chronic pain patients access to long-term opioids, you are seeing more patients these days, which in itself makes you vulnerable to accusations of overprescribing.

For states trying to stem an overwhelming tide of opioid addiction, understanding this while also maintaining robust enforcement measures can make for a delicate balance.

"Exceptions for prescribing opioids for those with cancer or other well documented chronic pain problems was part of that balance, and continues to be an important issue," according to Dennis Dimitri, MD, chair of the Massachusetts Medical Society Task Force on Opioid Therapy.

In 2016, Massachusetts became the first state to pass a law limiting opioid prescriptions. Dimitri said this, along with other factors like access to naloxone and increased education, contributed to Massachusetts' finally experiencing a decline in the rate of opioid overdose deaths, an optimistic sign of progress in a state hard hit by the epidemic.

"Unfortunately, the existence of so-called pill mills has been an issue, and we support the role of law enforcement in dealing with these entities," he noted. "However, we have also seen the phenomenon of legitimate practitioners who have developed expertise in treatment of patients with chronic pain being put in jeopardy by investigations. The best protection against such vulnerability is for prescribers to adhere to general guidelines about safe prescribing and document their practices. In turn, law enforcement and regulatory bodies need to keep abreast with the latest research and guidelines about prescribing to make sure that they do not unfairly pursue those physicians who are caring for this suffering population of patients."

From Ibsen's perspective, law enforcement has yet to make good on their side of the pact. Two weeks before our interview, his nephew died of a heroin overdose. He says the failure to distinguish between tragic cases of addiction like his nephew's and the needs of verified pain patients is an absurd conflation that's causing more harm than good.

"All they have to do is look at a computer, mine the databases, and find out who is writing the most prescriptions. It's like shooting fish in a barrel. It's much easier than doing the work of finding out who is selling pills, who is really committing a felony."

A Way Forward

It's a lonely position to fight from, and one that Ibsen said he would not go through again if given the chance.

"I thought my colleagues would follow me up San Juan Hill, and they did not," he said. "Until our culture decides that we want compassion back, until my profession decide that we are in the business of saving lives and relieving suffering, people are going to be abandoned."

For those left behind, there is uncertainty over how to best proceed.

Teresa Brewer said she prays every day for something to change. Rose Jr has brought a lawsuit against the VA, which is currently with the Sixth Circuit Court of Appeals. Brewer, Rose Jr, and Bailey Parker have all shared their stories on patient advocacy websites like Pain News Network.

However, as Parker notes, communing online only goes so far, and she and her fellow patients are at a detriment when it comes to pleading their cases.

"People that are in this much pain really have a hard time advocating for themselves."

So much of the work has fallen to those like Ogden, whose loved ones are personally affected by these policy changes, but who still have the energy and quality of life to actively combat them.

To help do so, Ogden cofounded an advocacy group called Families for Intractable Pain Relief. On July 9 of this year, she traveled to Silver Spring, Maryland, to attend a patient-centered meeting the FDA held to address the crisis. She addressed the meeting, just as she had at an earlier FDA policy steering committee in January.

Given 8 minutes to speak, she tried to touch on all the relevant points: the defining features of chronic and intractable pain; the World Health Organization's analgesic pain ladder[22]; and some potential ways forward. But it was the simple plea at the end of her presentation that perhaps spoke the loudest: "Listen to us!"


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