Beyond the Stigma: Chronic pain is the other side of the opioid epidemic
From UnionLeader.com posted on 01/26/2019. Original article can be viewed here.
Chris Sounia’s spine was crushed and his leg shattered when a drunken driver going the wrong way on I-495 in Massachusetts crashed head-on into the limousine he was driving.
Twenty-five years later, Sounia is among the estimated 19.6 million Americans who suffer from “high-impact” chronic pain, defined by the Centers for Disease Control and Prevention (CDC) as pain that interferes with daily life or work activities.
Many of these patients say they have become victims in the government’s battle against the opioid epidemic, as doctors have become fearful of prescribing these drugs and insurance carriers have refused to pay. They say they are being punished for the misdeeds of others.
And some say the fault lies with the CDC itself.
This is the other side of the opioid epidemic.
A letter of warning
Sounia spent a year at a rehab hospital in Salem after that 1994 crash. He went back to his chauffeur job for a time but a fall in 2000 shattered bones again. “I was eating Tylenol and Motrin like it was candy,” he recalled.
Sounia is convinced that all of that over-the-counter medication contributed to the massive heart attack he suffered in 2012; a surgeon performed a quadruple bypass, removing most of his breastbone and replacing it with a titanium chest plate.
That’s when his primary care doctor sent him to a pain clinic. After trying several other drugs that had terrible side effects, his doctor prescribed oxycodone, and Sounia has been taking it daily ever since.
In 2017, Sounia learned he had colon cancer; that meant more surgery to remove part of his intestine. He figures he’s had about 20 surgeries over the years, and each one came with its own pain.
Sounia is a big man; at 6-foot-7-inches, he weighs 370 pounds. He takes four 30-milligram oxycodones a day; he also has a prescription for up to five 15-milligram pills for days when he needs extra relief.
The letter came last August from the pain clinic where Sounia has been a patient for seven years. Due to a new federal policy taking effect Jan. 1, it warned him, he should expect to begin “weaning” off his prescription painkillers.
In 2016, in response to the opioid crisis, the CDC issued guidelines that recommended limits on prescribing opioids. And since then, public and private payers have been making coverage decisions based on the dosage limits recommended in those guidelines.
Citing the CDC guidelines, the Centers for Medicare and Medicaid Services issued a new policy for Medicare drug plans to follow starting Jan. 1. It requires “safety alerts” when patients present opioid prescriptions that add up to 90 “morphine milligram equivalents” (MME) or greater; the pharmacist is required to contact the prescribing physician “to confirm medical need,” according to the CMS website.
Sounia bristles at the new federal rule. “A pharmacist isn’t an MD,” Sounia said. “What right does he have to tell me what I need, and what goes in my body?”
Allows him to function
Sounia thinks chronic pain patients should be issued cards — like those that allow some patients to legally buy medical cannabis — to allow them to get their prescriptions without fighting with pharmacies or insurance companies.
The medication he takes doesn’t get him high, Sounia said; it just allows him to function, to spend quality time with his four kids and two grandchildren. And there are safeguards, he said; he had to sign an agreement with his pain clinic to comply with random urine testing and pill counts. “If you’re called upon to do a pill count, you bring your prescriptions up there, they count all your pills and they have to equal up to what you’re supposed to have,” he explained.
A spokesman for CMS, speaking on background and not for direct attribution, said in an email that addressing the opioid crisis is a “top priority” of the federal administration. He said, “decisions to start, stop, or taper prescription opioids must be carefully considered and … should be made between the patient and prescriber” and he said patients have the right to appeal a coverage decision.
The aim of the new policy, the CMS spokesman said, is “to strike a better balance between preserving patient access to medically necessary drugs and addressing opioid overuse without negatively impacting the doctor-patient relationship and the doctor’s ability to meet the needs of their patient.”
Stephanie Caucis is the operations officer for PMC Medical Group, which owns Granite State Pain Associates; it averages 3,000 patient visits a month across six locations in New Hampshire, including the Concord clinic where Sounia is a patient. In an emailed response to questions, Caucis said that “in some situations our patients have become the unintended victims of what are seemingly well-intentioned guidelines.”
Caucis said patients and providers alike feel like they’ve been caught up in efforts to stop the opioid crisis. “Often our providers express that they feel their ability to treat patients is unnecessarily regulated,” she said. “All want to see the illicit use of medications eliminated from our streets, but not at the expense of patients battling chronic and often debilitating pain.”
In a draft report issued last month, an inter-agency federal task force called for a review of the CDC guidelines for prescribing opioids for chronic pain, pointing to “unintended consequences” as a result of their “misapplication or misinterpretation.” One of those consequences, it said, is “the forced tapering or patient abandonment that many patients with chronic pain on stable long-term doses of opioids have experienced.”
The report by the Pain Management Best Practices Inter-Agency Task Force noted that at least 28 states have adopted laws related to opioids prescription limits based upon those same guidelines. “The CDC guideline was not intended to be model legislation for state legislators to enact,” the report states.
In 2016, the New Hampshire Board of Medicine adopted its own rules for opioid prescribing, without specific dosage limits. Instead, for chronic pain, the rules require physicians to “prescribe for the lowest effective dose for a limited duration.” Providers also must consult with an “appropriate specialist” when a patient receives a dose equivalent to 100 MME for longer than 90 days.
Sounia said he has already lowered his own prescription dose on his own, and his doctor has reassured him she won’t reduce the dosage further. “She’s not going to abandon me; she’s been right there since day one,” he said. His insurance company recently notified him that his current dosage has been approved for another year.
But he knows other pain patients who are being “tapered” off their medications — and he knows two New Hampshire patients who took their lives after their doctors stopped prescribing painkillers.
And he worries about what will happen to him when his doctor retires.
For those who don’t understand what’s at stake for people like him, Sounia suggests: “Try living a day in a pain patient’s shoes.”
“You wake up, you’re in pain; you go through the day, you deal with pain. You go to bed, you fight the pain to get some sleep, and then nine out of ten times you can make it through,” he said.
He said he understands why some patients give in to despair when their medications are cut off. “If someone takes all your hope away … you’re going to become desperate,” he said.
Despite everything he’s been through since his crash, Sounia doesn’t dwell on why all this has happened to him, and he shrugs off expressions of sympathy. “Everybody’s got their own path and destiny,” he said. “If it didn’t happen to me, it would have happened to somebody else.”
The car behind his limo that night was a minivan with a mom and three young kids. “They wouldn’t have survived,” he said. “I’d rather take the brunt of it than let that happen.”