When the former nonprofit director—a woman with a master’s degree in social work—moved from North Carolina to Spotsylvania County last fall, she brought detailed medical records about her chronic pain and the opioids she takes to treat them.
As she searched for a pain management doctor in the Fredericksburg area, she called at least eight different offices. Before she could even describe her situation, the receptionist would cut her off, saying: “We don’t prescribe opiates.”
The woman, whose first name is Becky, was shocked, then scared. She eventually found a doctor to treat her, and she signed a contract spelling out her expected behavior. It specified monthly urine tests, even though her insurance requires only four a year, and regular pill counts to be sure she didn’t exceed daily dosage. She could use only one pharmacy, even if that facility was temporarily out of stock, and she agreed to pay fines—or be dismissed as a patient—if she violated any terms.
“I think we [chronic] pain patients get it; we understand why this is happening and all of us are willing to do whatever we need to do to show that we’re working with the program,” she said. “But at the same time, we’re being treated like criminals before we even have done the first thing.”
Doctors are looking at opioid prescriptions through a microscopic lens because since 2013, more people in Virginia have died from drug overdoses than vehicle accidents or guns, according to the Virginia Department of Health.
Drugs caused 10,379 fatalities in the commonwealth between 2007 and 2017—and more than 72,000 deaths in the United States in 2017 alone, according to estimates from the Centers for Disease Control and Prevention.
As a result, the health care industry has reduced the number of opioid prescriptions, hoping to curtail “drug seekers” who may start with pain pills, which become a gateway drug to more illicit substances.
But the cutback also is affecting those with legitimate pain problems.
“People who use drugs responsibly, just like a diabetic uses insulin, face greater scrutiny simply because they are managing their pain to lead as functional lives as possible,” said Sally Balsamo, co-founder of the Alliance for the Treatment of Intractable Pain. “This is yet another byproduct of the other side of the opioid epidemic.”
'MISERABLY IN PAIN'
Becky, the Spotsylvania patient who moved from North Carolina, didn’t want to use her last name for fear someone would look up her address and rob her medicine cabinet. She agreed to be photographed because she said few people in the area know her.
The 44-year-old doesn’t get out much because of chronic bladder problems and severe nerve pain in the pelvic region. For the last two decades, she’s tried other measures, from lesser drugs to repeated nerve blocks to reduce the pain.
She was coping—and working full-time—despite pain caused by the pudendal nerve, which is in the tailbone and affects affects bladder and anal continence and sexual function. A 2014 procedure meant to block the pain hit the nerve instead and "kind of took me back a decade in terms of progress," she said.
"At that point, an opioid was pretty much necessary," said Becky, who had to quit her job. "I was miserably in pain."
A recent report from the Virginia Department of Health says prescription opioids have been the leading category of drugs causing or contributing to deaths since 2007. The report also points out that those who die from drug overdoses tend to mix prescribed painkillers with illicit drugs such as cocaine, heroin or fentanyl, a synthetic drug up to 100 times more potent than morphine.
Deaths from all drugs more than doubled in Virginia from 721 in 2007 to 1,538 in 2017, according to the VDH.
But deaths from prescription opioids alone remained constant in the same period, according to the report. In 2007, 401 people died from overdoses of prescription drugs. The number of deaths stayed in the 400-range for the next seven years—even dropping to 398 in 2015—before hitting 507 in 2017.
That leads patient advocates such as Balsamo to conclude that the opioid epidemic doesn't extend to those who take only the medicine prescribed to them.
Less than 1 percent of patients with chronic pain problems actually abuse opioids, but they’re all being treated like “drug addicts or junkies,” she added.
Distinguishing those who are in legitimate pain can be tricky.
“It’s not like a broken bone or a kidney stone, which I can objectively diagnose. Basically, I’m just taking the patient’s word for it,” said Dr. Robert Fines, an emergency physician with Mary Washington Healthcare who quickly added he doesn’t typically prescribe opioids for pain that he can’t measure.
Patients checking into emergency rooms know they’ll be asked their level of pain, from zero to 10, the worst imaginable. Many list a 10 because they know a high rating means they’ll be seen sooner, said Dr. Jayson Tappan, medical director of the emergency department at Spotsylvania Regional Medical Center.
When Patrick Neustatter practiced family medicine in Stafford County, he saw patients who deserved an Academy Award for their depiction of agony. He also met people with lower back problems or fibromyalgia, a condition that can cause widespread muscle pain, who had trouble functioning.
“You’re always trying to decide if they’re taking you for a ride or if they have legitimate issues," Neustatter said. "Doctors don’t like the idea of someone pulling one over on them.”
‘OUT OF CONTROL’
Getting pain under control has become such a high priority that government agencies who regulate the health care industry—and oversee its funding—have made it a fifth vital sign. It’s as important a measurement as temperature, pulse rate, breathing rate and blood pressure, Tappan said.
The government also decided to equate a hospital’s reimbursement with patients’ satisfaction ratings of how they were treated, including how their pain was managed.
“Over time, that led things to get a little out of control and those well intentions probably created the opioid epidemic that we have,” Tappan said.
At the same time, pharmaceutical companies offered stronger, safer opioids that promised less dependency. Trusting these statements initially led doctors to prescribing more opioids, said Dr. Jason Sneed, who practices osteopathic medicine, a "whole person" approach rather than treating specific symptoms.
Sneed has written about a physician's perspective to the opioid problem on his blog. He listed the pharmaceutical push to prescribe more pills as the first factor and government regulation as the second, especially in terms of tying reimbursement with patient satisfaction.
"Unfortunately, what a patient wants and what is best for them are often not the same thing," Sneed said.
Fines has seen that as well. Perhaps medical advances have led some to believe they should never be in pain, no matter the situation.
“I have noticed a kind of general trend in society where people feel it’s their human right not to feel discomfort,” Fines said.
He’s not referring to people with cancer or broken bones or victims of horrible vehicle accidents. He’s talking about patients with sprained ankles and toothaches who demand narcotics.
Tappan has dealt with parents of 8- to 10-year-old children who want heavy-duty meds for their kids after they’ve hurt themselves on the field or playground.
“Parents are adamant; they’re screaming at us, ‘He’s in pain. Do something,’” Tappan said, adding that all those factors probably contributed to why doctors “went too far in one direction.”
'WRONG WITH THE SYSTEM'
Those factors also are part of the reason the pendulum has swung in the opposite direction, and other patients face the same situation as Becky.
Mark Snyder has a medical record “as fat as a phone book,” but said he hasn’t been able to find a clinic to manage his chronic pain since he moved from New York to the Northern Neck in May.
Snyder has more than 20 health issues, including heart problems and degenerative discs, kidney cancer, arthritis and diverticulitis. He’s been on pain medicine since 1986 for nerve damage after a severe car accident in which he was hospitalized for nine months and almost lost his arm and leg.
“I have the paperwork to back up my necessity for pain medicine, and it doesn’t count for a hill of beans,” he said.
Since moving to Virginia, he’s found doctors to address all his other health problems and has had all his prescriptions filled except for the opioids. As a result, he’s faced withdrawal symptoms that he says compound the pain by 10 times.
“I’m 68, I’m not a 20-year-old looking to get high,” he said. “A cancer patient can’t even get medicine? There’s something wrong with the system.”