Dopesick

by Beth Macy

  But where prescribed painkillers were concerned, the Harrison Act had effectively contained the earlier iatrogenic wave of addiction, and the small-town female morphine addict gave way to the image of the hustling, mainlining male junkie. Progressive doctors championed the carefully restricted use of narcotics and called out heavy prescribers for being behind the times. Pharmacists, too, upped the refill bar so high that in 1955 the heroin-addicted Beat writer and artist William Burroughs called them “sour, puritanical shits,” unlikely to fill even a codeine prescription without checking with the doctor’s office first.

  When 20 percent of American soldiers came back from Vietnam with symptoms of heroin dependence, researchers were initially puzzled by the fact that most didn’t go on to become heroin addicts—possibly, some theorized, because they returned to spread-out social networks in rural areas and small towns where heroin didn’t exist. It may have helped, too, that many were detoxed in Vietnam before they came home, with the veterans who continued to struggle with addiction typically being the ones who already had drug problems before serving.

  “In the early 1990s, probably ninety percent of the heroin market was still in cities like New York, Chicago, and Detroit,” Courtwright explained. “There was this long-standing urban hierarchy of heroin that completely dominated the illicit opioid market in the United States.” But when doctors started widely prescribing OxyContin for noncancer pain in the late 1990s, it effectively nationalized the supply, making opioids no longer only a big-city story. “So that any doctor in any small town, under the dispensation of a new FDA-approved prescription, could now suddenly provide opioids to people with low back issues and so on. You read a lot about economic depression and loss of morale, and I’m certain that fuels the epidemic.

  “But the supply expansion [via OxyContin] came before anything else. And if it hadn’t been for the supply expansion, then this [epidemic] would not have happened,” Courtwright said.

  If history was any indication, the moment OxyContin and other opioid pills became too expensive or too cumbersome to get, illegal drug peddlers would step in to fulfill the market demand, just as they had done a century earlier when heroin became illegal. For centuries, dealers of opium, morphine, and heroin understood that an addicted person’s fear of running out—of becoming dopesick—portended one hell of a business model.

  The author of several books on the history of drug addiction, Courtwright said he used to tell his students that “what most surprised me in my lifetime were things like the internet, or seeing tattoos on respectable women. But I’ve got to add this to the list of real shockers. I’m sixty-four years old, and I have to admit, I didn’t think I would ever see another massive wave of iatrogenic opiate addiction in my lifetime.”

  Courtwright wasn’t the only one. Though it took nearly a decade before police, the press, and drug-abuse experts fully understood what was happening, Ed Bisch watched the urbanization of the pill epidemic play out on his front lawn in 2001, as paramedics carried his son’s body away.

  He retreated to his computer, where he was shocked to learn that his son’s death had been the region’s thirtieth opioid overdose in the past three months.

  How was that possible when he’d only just learned the word? “The internet was still new, and back then it was mostly message boards as opposed to websites,” he said.

  Bisch channeled his grief into computer code. Hoping to warn other families, he created his own message board, giving it the bluntest moniker he could think of—OxyKills.com. Within weeks it had morphed into a scrolling database of grief, warnings, and statistics. The website became a clearinghouse for the latest Oxy-related overdose numbers reported by local medical examiners and the DEA. Bisch promoted news stories about OxyContin, such as when the New York Times noted that the drug’s sales in 2001 hit $1 billion, outselling even Viagra.

  Parents from Florida to California joined Bisch in memorializing their dead children on his site, which became a running tally of dead athletes and young mothers and former beauty queens, many no more than twenty years old. “I was answering every email, and it was consuming me,” Bisch recalled. “Probably ten deaths a day, sometimes a hundred emails a week.”

  Lee Nuss of Palm Coast, Florida, was too grief-stricken to reach out to Bisch initially, but her daughter, Monique, called him one night, begging him to talk to her mom. Turned out they had grown up in the same section of Philly, in the same working-class neighborhood of Fishtown, less than a mile apart. And the similarities didn’t end there.

  Nuss, too, had lost an eighteen-year-old son, Randy, who died of a single, crushed-up 80-milligram Oxy bought from a friend whose mother wanted him to sell it to pay their rent. “I had no idea he was using pills until this happened,” Nuss said. She told herself that Randy hadn’t been using long, because she still had opioid pills prescribed to her in the wake of dental surgery that were untouched at the time of his death.

  The Fishtowners made an informal alliance with Van Zee and Sister Beth after reading Barry Meier’s 2003 book, Pain Killer. If OxyContin nationalized the opioid supply chain, Nuss and Bisch nationalized the opposition to it, launching a grassroots nonprofit called Relatives Against Purdue Pharma (RAPP). It was Ed Bisch’s message board sprung to life, a nonvirtual resistance party that would play out politically and in person over the next decade.

  Together the parents-turned-activists would lobby for the creation of statewide prescription monitoring programs, or PMPs, so doctors could check a patient’s prescription records and prevent themselves from being shopped. Members would sponsor drug-prevention workshops in schools and hold signs outside Purdue’s corporate headquarters featuring poster-sized pictures of their dead kids. They would battle—online and at times in person—with chronic-pain patients who praised the drug for allowing them to function and to sleep through the night. Bisch suspected (correctly, in a few cases) that some were “paid advocates,” hired by Purdue to troll his website and post contrary views.

  From court cases to medical seminars, RAPP could be counted on to turn up whenever and wherever Purdue was in the news. In 2003, its members traveled from Rhode Island and New Jersey to rally outside a drug-abuse-prevention conference held in Orlando at the Caribe Royale resort—because Purdue was an exhibitor at the conference. The protesters were already battling the rain when Bisch began reading aloud the names of 260 people memorialized on his website—only to have an unidentified woman turn a sprinkler on them. (A hotel executive denied having anything to do with soaking the parents.)

  A Purdue Pharma spokesman at the event told an Orlando Sentinel reporter: “We offer our sincere condolences to anyone who has suffered the loss of a loved one from a drug overdose” but insisted that Purdue’s marketing of OxyContin had been “appropriate.”

  Raised Catholic and deeply religious, Lee Nuss began wearing a pair of rosary beads for protection at such events. As an added talisman, she carried a tiny bronze urn in which she’d tucked a portion of her son’s remains. (As she explained it to me: “I leave the main urn at home on my mantel. But when I leave the house, I like to have Randy right there with me.”)

  The memorials kept flooding the message board. When Barbara Van Rooyan’s twenty-four-year-old son, Patrick, died in 2004—after ingesting his first and only OxyContin, at a Fourth of July party—she reached out to Bisch, who put her in touch with Van Zee. “At the time, I knew very little about the drug, other than Rush Limbaugh had been addicted to it,” she told me.

  Van Rooyan, who lived in Folsom, California, had also read about Van Zee’s battle with Purdue in Pain Killer, and she had one central question for the country doctor: “How the hell had such a strong drug come on the market to begin with?”

  Van Zee walked her through the FDA’s 1995 approval of the drug, led by its top examiner, Curtis Wright. Van Zee just happened to have a copy of the company’s New Drug Application, or NDA, a document trove that had been a Christmas gift from Sue Ella in 2000. “It was all I wanted that y
ear,” Van Zee told me. Sue Ella admired the way her mild-mannered husband was stifling his hardwired passivity to stand up for the region, yet she increasingly resented the time it took away from their family life. “We used to try to go a day without saying the words ‘addiction’ or ‘OxyContin,’ but we never made it, not once,” she said.

  Though Purdue claimed it had no idea of the drug’s abuse problems until February 2000, Wright had signed off on a 1995-filed NDA review that spelled out how crushing the tablets would lead to immediate, rather than controlled, release of the drug; that withdrawal symptoms had been witnessed in several patients during clinical trials; and that 68 percent of the oxycodone was in fact recoverable from one single, crushed-up pill when liquefied and injected.

  In a summary of his approval, Wright had even urged caution in the product’s marketing materials: “Care should be taken to limit competitive promotion.” In fact, minimal care had been taken in the drug’s promotion. Wright would go on to work as a consultant for Purdue Pharma two years later.

  Van Zee told Van Rooyan, too, about the eight-hour drive to Maryland he’d made in January 2002 to testify before an FDA advisory committee convened to discuss the agency’s role in approving and overseeing the management of narcotics. That meeting pitted Van Zee, wearing his only suit and a Jerry Garcia necktie his mother had given him, against Purdue executives and some of the nation’s top pain-management experts, most of them acknowledging that they were or had been paid speakers for Purdue.

  Van Zee found himself outnumbered nineteen to one, a harrowing experience for a loner not accustomed to public speaking.

  “I get nervous,” he told me. “It was intimidating, especially in front of my peers, all of whom had big reputations in the field. But this was my responsibility to do, and I did feel like I was speaking truth to power.”

  “He practiced and practiced and practiced,” added Sue Ella, who accompanied him on the trip. “I tend to be emotional when I speak, but Art is so careful about saying only what he absolutely knows to be true. His ego is never invested.”

  The gist of Van Zee’s opposition, as outlined by one Purdue-funded speaker: “We are allowing the abuse and the ignorance of the few to affect the potential health for the many.…Remember the biggest form of drug abuse today is under treatment, and this is a crime that we can all eradicate.”

  The next morning, in a ten-minute conversation with the country’s elder statesman of pain management, Dr. Russell Portenoy, Van Zee asked Portenoy to describe what he believed to be an acceptable level of addiction risk from OxyContin. Given that the “less than 1 percent” figure, trotted out repeatedly from the 1980 medical-journal letter, was out of date and applied only to a hospital setting—rather than in the context of chronic pain treated at home—Van Zee asked Portenoy: Hadn’t that been a meaningless calculator of long-term risk?

  He showed Portenoy an OxyContin distribution map, highlighting the overlap between heightened crime and drug abuse in regions like Lee County, where OxyContin was prescribed at a rate 300 to 600 percent above the national average.

  “That’s good,” Portenoy responded. The more opioids that were out there, the better to meet the needs of chronic-pain patients.

  But what if the risk of addiction is 5 or 6 percent? Van Zee persisted. “What do you consider acceptable collateral damage? If you create fifty thousand patients that are opioid addicts?”

  The country doctor’s single-mindedness exasperated Portenoy, who walked away.

  Although a decade later Portenoy conceded to Wall Street Journal reporters that he and other pain doctors had mistakenly overstated the benefits of opioids while discounting their risks, back then Van Zee was the doctor whose judgment was questioned and even mocked. “A lot of people discounted Art as a rabble-rouser and a kook,” a prominent Virginia health care administrator explained. Another parent activist suggested that Van Zee’s uncomfortable and slightly disheveled appearance helped Purdue cast him as a kook rather than the groundbreaking physician he was. “He should’ve gotten the Nobel Peace Prize,” she said.

  Van Zee pressed on, raising similar concerns at the end of the 2002 hearing with the FDA committee’s chairman, Dr. Nathaniel Katz. He told Katz he’d spent months looking for studies that addressed the long-term-abuse risks to patients who used painkillers.

  “There’s a reason you didn’t find any,” Katz, also a prominent pain doctor, explained. “They don’t exist.”

  This time it was Van Zee’s turn to walk away. It dawned on him then that the only detailed study about potential abuse was the one that Purdue itself had undertaken in 1995 for its NDA—the one he’d read about in the gift from his wife. The one that noted that 68 percent of the drug could be extracted from a crushed tablet.

  The FDA forum ended with experts urging the agency to closely monitor abuse and addiction as soon as new drugs went to market. But for Van Rooyan’s son Patrick, the efforts were way too little, way too late. A year before his death, the FDA had missed another opportunity to help her son when it chose not to restrict the use of OxyContin to severe pain, a move that might have reduced addiction without compromising terminally ill or dying patients’ access to the drug. Van Rooyan was never against the use of OxyContin for terminal pain but argued that it should not be used for chronic, noncancer pain unless all other treatments have first been explored. “To this day, I believe OxyContin has a place for terminal, end-of-life care, and for acute pain when other, lesser opioids haven’t worked,” she told me. But it was clear as early as 2004 to Van Rooyan, then a researcher, professor, and college counselor, that the FDA failed to protect the public, her son included, not only when it approved the drug but also multiple times thereafter.

  It would not come to light for nine more years that FDA regulators and Big Pharma executives had been quietly holding private meetings at expensive hotels at least annually since 2002, through a drug-industry-funded nonprofit, an ethical quandary a Milwaukee Journal Sentinel reporter shone the light on in 2013. The meetings led to the development of “enriched enrollment,” an aptly named practice that allowed drug companies to weed out people from their studies who didn’t respond well to their drugs, therefore tipping the balance toward FDA approval of new drugs—and away from science.

  “Pay-for-play is just not the way the FDA operates,” an FDA regulatory official claimed when the investigation broke. “That’s not part of the culture of the FDA.”

  The same Journal Sentinel reporter, John Fauber, would also uncover how the American Pain Society and the American Academy of Pain Medicine pushed for expanded use of opioids for long-term chronic pain while taking in millions from the companies that made them. His articles prompted a 2012 Senate investigation, led by Senators Chuck Grassley and Max Baucus, that targeted both the American Pain Foundation and Purdue, among other nonprofits and pharmaceutical companies.

  But the results of that investigation would end up sealed in the Senate Finance Committee’s office, where they remain buried, despite periodic calls for their disclosure.

  “A lot of us were very happy when they started the investigation, but nothing’s come of it; it was never followed up on,” said Dr. Steve Gelfand, a South Carolina addiction specialist and activist who helped Van Rooyan file a recall petition with the FDA.

  “To me, it’s all been just another political power play,” he said.

  Staffers at the FDA got used to hearing the name Barbara Van Rooyan. (“We all know who you are,” an ombudsman told her.) She was burning up their phone lines, demanding a temporary recall of OxyContin until it could be reformulated in abuse-resistant form and relabeled for severe pain only. “The FDA’s recall form is long and involved, designed to make you not want to do it,” Van Rooyan remembered. A similar FDA petition to force Purdue to put stronger warning labels on OxyContin, detailing the risks of frequent prescribing, had been filed by the Connecticut attorney general in 2004—and was stalled in bureaucratic purgatory. (That initial application would be rejec
ted four years later, in 2008.)

  “But I’m a stubborn Dutchwoman with my degree from Berkeley, and I was used to doing research.” And the words of the friend who’d given Patrick the OxyContin pill haunted her as she typed: “It’s kind of like a muscle relaxant, and it’s FDA-approved, so it’s safe,” he had told him.

  If Van Zee’s decade-long quest had begun to feel quixotic—now in his sixties, he wondered how much longer he could keep up the pace of thirteen-hour workdays, much of them spent treating addicted patients—Van Rooyan’s focus was a balm. Whereas Van Zee’s earlier recall petition with its ten thousand signatures was never formally submitted to the FDA—“we simply didn’t have the time, energy, staff to do that,” he said—Van Rooyan was unfazed by the paperwork, happily folding Van Zee’s data into hers with her physician husband’s help and filing it on February 1, 2005.

  She testified alongside Van Zee at FDA hearings and organized a protest in her Northern California hometown outside a Purdue-funded continuing medical-education seminar taught by a well-known pain-clinic doctor.

  She waited for an answer on her FDA recall petition. And she waited.

  Following in her artist son’s footsteps, she painted portraits of herself holding Patrick shortly after his birth, then another of his brother, Andrew, as she saw him in his grief at his brother’s death: raw and naked, curled up in a fetal ball.

  “I had a feeling that things would get a lot worse before they got better,” she told me. “I knew that I might not see change in my lifetime, but I was going ahead with this battle anyway.”

  If the federal regulators weren’t moved by memorials to dead Americans from their grieving mothers and fathers, maybe the country doctor and the nun and their growing team of mourning parents would finally get justice from the courts. At minimum, they hoped to amplify Purdue Pharma’s negative press and raise awareness about the heroinlike drug.