by Beth Macy
It was exactly what Art Van Zee predicted in one of his first letters to Purdue. “My fear is that these are sentinel areas, just as San Francisco and New York were in the early years of HIV,” he had written of Lee County back in November 2000. Van Zee had no idea then that the OxyContin epidemic would become a heroin epidemic, which itself would lead to more deaths from HIV and hepatitis C.
From a distance of almost two decades, it was easier now to see that we had invited into our country our own demise.
Methadone dispensing room, Gray, Tennesse
Chapter Ten
Liminality
I watched the Hope Initiative take hold in early 2016 at the same time I began following Tess Henry and her cheerful five-month-old son. I hoped that one day their stories would converge. But as loved ones and advocates eager to help heroin users navigate treatment have shown me, threading a needle blindfolded over a hot bed of coals might have made for a less complicated odyssey.
Tess was nearly seven months pregnant when she left jail in June 2015. For a month, she lived with her mom and tried to make a go of it with her boyfriend, the baby’s father—“disastrous,” Patricia and Tess agreed—before they found a private treatment center two hours away that would take Tess during her final month of pregnancy. Private insurance covered most of the $20,000 bill while her dad paid the $6,500 deductible, using the remainder of Tess’s college-savings fund. The Life Center of Galax was one of the few Virginia facilities that accepted patients on medication-assisted treatment (methadone or buprenorphine). Tess was now taking Subutex, a form of buprenorphine then recommended for some pregnant mothers. (Suboxone is typically the preferred MAT for opioid users because it also contains naloxone, an opiate blocker; Subutex, which is buprenorphine with no added blocker, was then considered safer for the baby but more likely to be abused by the mom.)
After spending the first half of her pregnancy in the throes of heroin addiction and the second half on Subutex, Tess was nervous about the possibility of delivering a child with neonatal abstinence syndrome, a painful state of withdrawal that sometimes requires lengthy hospital stays. The syndrome is common even among so-called Subutex babies, about half of whom require neonatal intensive care and methadone treatment to facilitate their withdrawal from the medication.
An NAS baby is a portrait of dopesickness in miniature: Their limbs are typically clenched, as if in agony, their cries high-pitched and inconsolable. They have a hard time latching on to either breast or bottle, and many suffer from diarrhea and vomiting. When neonatologist Dr. Lisa Andruscavage showed me the hospital’s NAS services, nurses who had just spent the better part of an eight-hour shift coaxing an opioid-dependent baby girl born four weeks early to sleep greeted us, only half joking, with “If you two wake that baby up, we will kill you.”
While Tess’s son was born two weeks early, he entered the world astonishingly healthy, showing zero signs of distress. He was not among the fifty-five babies born with NAS at Roanoke’s public hospital that year, a rate well above the state’s average. He was not among the children seen at the region’s NAS clinic, where dependent babies released from the NICU come back for weekly check-ins while being very slowly weaned from methadone under their mother’s or another family member’s watch; despite such attention, around 27 percent of the clinic babies end up in foster care.
In fact, Tess’s son was a calm baby, happy to sit on your lap looking at a board book or gumming a teething ring or playing peek-a-boo. He had his mother’s intense eyes, and his grin was captivating, bell-shaped and wide. Back then, Tess was fiercely protective, to the point of not letting strangers hold him, even for his first picture with Santa. She held him on her own lap instead, saying she was worried Santa might drop the baby or give him germs—a common reaction among drug-addicted new mothers, an NAS nurse told me. “These moms are so over the top after they deliver because they’re trying to show everybody how much they care,” Kim Ramsey, the hospital’s neonatology nurse specialist, explained. Many have been stigmatized by their friends and families, even by members of the hospital staff.
“Our staff used to be really ugly to them,” Ramsey admitted. “They’d say, ‘This is ridiculous. These moms need to quit having babies and quit doing drugs,’ myself included. We had no understanding that these women’s brains have been altered, and what they need now more than anything, for the sake of the baby, is our support.”
Asked what her goal was in early 2016, Tess told me: “To be a good mom to my son. For right now it’s just to get some good sober time, and eventually go back to school and live a normal life. Luckily, I have a nice family, and I’m not dead or serving prison time. I’ve been given second and third chances, so…”
The buprenorphine made her “feel normal,” as Tess thought of it, with insurance covering 80 percent of the medication’s costs. Visits to her addiction doctor were cash only, though, requiring $700 up front and $90 to $100 per follow-up visit, as many as four a month, in order to be monitored and receive the buprenorphine, which prevents dopesickness and reduces cravings, theoretically without getting you high. “It’s a real racket,” Tess’s mom, Patricia, said of cash-only MAT practices. “And there are waiting lists just to get into most of these places.”
At the time, federal Health and Human Services rules prevented MAT-certified doctors from treating more than 100 patients at a time, a cap adjusted to 275 later that year in response to the opioid crisis. Access to MAT in Virginia would broaden greatly in 2017, thanks largely to the efforts of Dr. Hughes Melton, a Lebanon addiction specialist tapped to help lead the state’s Department of Health opioid response. Every week, piloting his own airplane, he would make the round trip between his Suboxone clinic, Highpower, in Lebanon, Virginia, and his office in Richmond. Melton also worked with state Medicaid officials to broaden reimbursements as well as to include payment for mandatory counseling and care coordination, partly as an incentive for cash-only clinics to begin accepting insurance, including Medicaid.
Some eventually did, but the vast human need for treatment was slow to be recognized, and even slower to trickle down to most communities.
As a work-around to the Republicans’ refusal to expand Medicaid in Virginia, the Governor’s Access Plan, initiated in January 2015, would provide additional addiction treatment and services to fourteen thousand Virginians—but only to a fraction of those in need, and not until 2017, leaving most families to continue navigating wide treatment gaps on their own. “When calling facilities there is rarely a sense of urgency for capturing the addict,” Patricia explained, in the middle of a subsequent crisis with Tess. “An application process has to be completed. How many addicts on the streets have insurance, Medicaid, or ability to fax lengthy applications, or access to large amounts of cash?”
For now, Tess and her mom had to pay cash, up front, at every visit.
Among public health officials, buprenorphine is considered the gold standard for opioid-use disorder because it reduces the risk of overdose death by half compared with behavioral therapy alone. It also helps addicts get their lives together before they very slowly taper off—if they do. One researcher recommended that MAT users stay on maintenance drugs at least twice as long as the length of their addiction, while others believe it’s too risky for long-term addicts to ever come off the drugs.
But black-market dealing of buprenorphine, especially Subutex, is rampant. And the drug can get you high if you inject or snort it, or take it in combination with benzodiazepines, a sometimes fatal blend.
Though I’d visited several Suboxone clinics considered to be best-practice beacons in addiction medicine—including Hughes Melton’s in Lebanon and Art Van Zee’s in St. Charles—a plethora of shoddy prescribers in rural Virginia and elsewhere in Appalachia had given the good clinics a bad name. Operating at clinics often located in strip malls and bearing generic-sounding names, some practitioners defy treatment protocols by not drug-testing their patients or mandating counseling, and by co-prescribin
g Xanax, Klonopin, and other benzodiazepines—the so-called Cadillac high.
“Their treatment is a video playing in the lobby as a hundred patients walk through to get their meds; it’s insane!” said Missy Carter, the Russell County drug-court coordinator who has dealt with widespread Suboxone abuse among her probationers as well as in her own family.
Overprescribing among doctors specializing in addiction treatment was rampant, according to several rural MAT patients I talked to who unpacked how Suboxone doctors prescribed them twice as much of the drug as they needed, fully knowing they would sell some on the black market so they could afford to return for the next visit. Others traded their prescribed Suboxone for illicit heroin or pills.
Almost every Virginia law enforcement official I interviewed for this book despised Suboxone, and most Virginia drug-court judges refused to allow its use among participants. (Nationally, roughly half of drug courts permit use of MAT, though the scales seemed to bend toward acceptance as the crisis deepened.) Critics compared the British makers of Suboxone with Purdue Pharma because of their zest for market saturation and noted that clinic operators have a financial incentive not to wean someone off the drug. “We have people shooting up Suboxone and abusing it every which way,” Mark Mitchell, the Lebanon police chief, told me. “For a town of just thirty-four hundred to have three Suboxone clinics—that’s absurd.”
“People [outside of Appalachia] don’t believe me,” said Sarah Melton, a pharmacy professor and statewide patient advocate who helps her husband, Hughes, run Highpower, their Suboxone clinic, which mandates strict urine-screening protocols, with on-site group and individual counseling. Suboxone, with its blocking agent naloxone, “is a wonderful medicine, but we were seeing actual deaths from Subutex here, where people are injecting very high doses of it. And it comes down to these physicians wanting to make so much money, just like they did with the opioid pills!” Subutex is the monoproduct version of buprenorphine; lacking the added naloxone blocker, it is therefore more coveted among some of the addicted, who like the option of being able to take additional opioids such as Percocet at night to get high, multiple users told me.
In Johnson City, Tennessee, just over the Virginia border—where several of the nation’s top buprenorphine prescribers have offices—one cash-only prescriber admitted as much in a public forum, saying, “We give ’em enough so they can sell it and stay in treatment,” Melton recalled.
Buprenorphine is the third-most-diverted opioid in the country, after oxycodone and hydrocodone.
Hope Initiative angels like Jamie Waldrop and Janine Underwood were opposed to buprenorphine because, based on their sons’ experience, it was too easily diverted and abused. Patricia wasn’t initially a fan either, because of the expense and the lack of accountability on the part of Tess’s doctor, whose drug-testing and counseling protocols seemed lax.
She texted me after taking care of a twenty-five-year-old IV Suboxone user at the hospital where she worked who claimed that 90 percent of all Suboxone was abused. To which I gently replied: “I know Suboxone abuse is awful, but at least no fentanyl is in it, so it’s somewhat safer than street heroin.”
Tess, too, had clearly figured out how to abuse the drug meant to keep her off heroin—Patricia found spoons and Subutex powder among her things, and Tess told me she doubled her dosage when stressed. Patricia fumed, too, because all but one of the treatment centers she’d called when Tess was pregnant refused to accept her until she’d been detoxed from all drugs, including buprenorphine. Even the hospital where she delivered the baby refused to give her a script for MAT. Instead they arranged for Tess to be seen at a local methadone clinic after Patricia refused for a day to take Tess and the baby home, complaining that it was an “unsafe discharge.” They landed at the clinic moments before it closed, with the newborn in tow.
“I’m walking around the methadone clinic parking lot for two hours with a four-day-old baby,” Patricia said. “And it was loaded with addicts. It was a place where Tess’s circle of addicts would become even bigger than it already was.” On days when Patricia had to work, her octogenarian father, who walks with a cane, drove Tess to the clinic.
“It’s a broken system,” said Ramsey, the nurse clinician. Too few obstetricians chose to become waivered to prescribe Suboxone, and very few drug-tested their pregnant moms, afraid of offending upper-middle-class patients and hiding behind their American Congress of Obstetricians and Gynecologists’ recommendation that a verbal screening suffices.
“We need to test all pregnant moms,” Ramsey said in a heated NAS-unit policy meeting I sat in on that pitted pediatric against obstetric staff. “We’re doing pregnant moms no favors by denying them the proper screening. It’s why movie stars and musicians get the crappiest health care—because no one wants to tell Prince he has an opioid problem.”
Tess relapsed not long after giving birth, Patricia discovered when she came home from a walk in the woods to find a man lurking around her mailbox. He told Patricia he’d come to return thirty dollars he owed Tess, but Patricia guessed, correctly, that he was a drug dealer. Tess went back to treatment in Galax for another month while the grandmothers kept the baby, then around six weeks old.
By the time I met Tess, she had just returned home and was hoping to transfer to a sober-living or halfway house—but the problem was, many didn’t allow MAT, and none of the available facilities would allow her to bring the baby. So she was back at her mom’s house and on MAT.
Though she didn’t agree with Tess’s MAT doctor’s protocols and cash-payment restrictions, Patricia was grateful she took Tess on as a patient when all the other area prescribers had long waiting lists.
Tess’s problems were growing worse by the minute, and the systems designed to address them were lagging further behind, mired in bureaucratic indifference.
For several months in early 2016, I drove Tess and her baby to Narcotics Anonymous meetings, recording our interviews (with Tess’s permission) on my phone as I drove and walking the baby around the back of the meeting room when he cried.
But Tess was edgy and distracted at the meetings, compulsively taking cigarette breaks and checking her phone. She was glad to leave her mother’s house but complained about the first meeting we attended, in white working-class southeast Roanoke, pointing out familiar drug dealers lingering outside the church where the group met. In the past, she’d preferred going to meetings in black neighborhoods because participants there were funnier, tended to have more clean time, and were “way more real,” she said.
She had been to twelve-step meetings before, both AA and NA, but felt stigmatized for being on buprenorphine, which many participants perceive as not being “clean,” or simply as replacing one opioid with another—a cultural gulf that only seemed to widen in the two years I followed Tess. Although NA’s official policy was accepting of MAT, longtime NA members who were asked by the meeting leader to sponsor or mentor Tess politely declined—a shunning that must have “felt like daggers” to her, a relative later said.
If you were drawing a Venn diagram comparing Suboxone attitudes among public health experts and criminal justice officials in the Appalachian Bible Belt communities where the painkiller epidemic initially took root, the spheres would just barely touch.
It had been that way since the birth of methadone, a synthetic painkiller developed for battlefield injuries that was discovered in—or rather, recovered from—German labs shortly after World War II. American researchers soon learned that methadone quelled opioid withdrawal, but the Federal Bureau of Narcotics (precursor to the DEA) was rabidly against using drugs to treat drug addiction. The FBN framed methadone as “unsafe”—read: and maybe even pleasurable—after studies revealed that morphine addicts liked it. The FBN also harassed the handful of doctors who used it in the 1960s to treat morphine and heroin addiction. Such controversies continue to this day and illustrate the blurry line between lethal and therapeutic, between the control of pain and suffering and the pleasu
re of a cozy high.
Over the next decade, into the 1970s, that criticism spurred researchers to improve on methadone and to develop compounds that would both block the euphoric feelings and the dangerous respiratory depression brought on by opioids, including methadone. Such compounds led to the development of next-level maintenance drugs: buprenorphine and naltrexone (now known by the brand name Vivitrol).
Vivitrol, an opiate blocker and anticraving drug given as a shot that lasts around a month, has no abuse potential or street value, and would therefore later become the favored MAT of law enforcement. While naltrexone was approved for treatment of opioid and alcohol addiction in 1984, it was slow to gain social acceptability among doctors or addicted patients despite one researcher’s belief that it was the “pharmacologically perfect solution.” It wasn’t widely used until its maker began aggressively marketing the injection to drug courts and jails, beginning around 2012.
Buprenorphine also blunts cravings, and it’s less dangerous than methadone if taken in excess, which is why regulators allowed physicians to prescribe it in an office-based setting rather than clinics that have to be visited on a near-daily basis. “I don’t think anyone thought the street value of bupe would be significant,” the historian Nancy D. Campbell told me. “That is generally thought of as quite a surprise.”
