Six months after surgery to repair a damaged urinary tract in 1998, computer technician Doug Hale woke one morning with excruciating, burning pain. Hale’s suffering persisted for years, despite all sorts of treatments. Finally, in 2006, he was prescribed strong doses of opioids.
Fast-forward 10 years. Still on his pain killers, Hale was popping so many of the highly addictive pills that he regularly ran out of his prescription early. His doctor cut off his supply and urged Hale to enter a detox program. That didn’t work. Hale, still in agonizing pain and now suffering from intense withdrawal symptoms, returned to his doctor and pleaded to get back on his opioid regime. The doctor refused. The next day, Hale put the barrel of a small-gauge gun in his mouth and pulled the trigger.
It would be tempting to view Hale’s death, at 53, as one more sad entry in the never-ending national tragedy of opioid deaths. In fact, it’s much more than that. Hale’s story is a window into the country’s silent majority of opioid sufferers.
These are the millions of painkiller-dependent users inhabiting a vast gray zone somewhere between medical patient and drug addict, who are finding themselves suddenly abandoned in droves by the medical system. Under threat of lawsuits and government and insurance industry crackdowns, doctors have been cutting off the supply of painkillers, forcing many of their patients to quit cold turkey after years or even decades of dependence, sometimes with catastrophic consequences. Worst of all, those left suddenly without their meds often have nowhere to turn for help.
“These are victims of our era of aggressive prescribing,” said Andrew Kolodny, co-director of opioid policy research at Brandeis University’s Heller School for Social Policy and Management. “These patients become hot potatoes that no one wants.”
Roughly 8 million Americans are on long-term opioid therapy for chronic pain, and as many as a million are taking dangerously high doses, said Michael Von Korff, a senior researcher at the Kaiser Permanente Washington Health Research Institute. In the Medicare program alone, 500,000 patients were on high opioid doses in 2016, according to a 2017 report from the Department of Health and Human Services.
Many health professionals, fearing sanctions or even the loss of their licenses following government cases against a handful of doctors, have been caught up in a broader crackdown sweeping the pharma industry. In 2016, the Centers for Disease Control and Prevention issued guidelines for treating chronic pain, warning doctors to avoid prescribing high opioid doses when possible. Doctors have been heeding the message. Since peaking in 2010, prescriptions for more dangerous, higher-dose opioids dropped 41 percent from 2010 to 2015, according to a CDC analysis.
Meanwhile, more than a dozen states and about 100 counties and cities have already sued Purdue Pharma LP, other opioid makers and drug distributors, in a strategy echoing the litigation that led to the 1998 $246 billion settlement with Big Tobacco. Purdue is proposing a global settlement in an attempt to end state investigations and lawsuits, Bloomberg News reported on Nov. 17. And last month, President Donald Trump declared widespread opioid abuse a public health emergency.
Purdue Pharma, the maker of OxyContin, said it is “deeply troubled” by the national opioid crisis and is distributing the CDC’s treatment guidelines to doctors. Johnson & Johnson, maker of the fentanyl-containing Duragesic patch, said it is “committed to working with federal, state and local officials to help find meaningful solutions” to the opioid problem. Teva Pharmaceutical Industries, which sells generic opioid pain killers, declined to comment but in the past has denied wrongdoing.
In the battle to wean patients off opioids, dosage has emerged as a critical issue. Chronic pain sufferers on high doses aren’t necessarily addicts, at least not the sort who would resort to buying drugs on the street, experts say. Some may indeed benefit from the drugs and function well on them. Yet many aren’t getting better or going back to work and still report high levels of pain, despite big doses.
Even patients taking high doses prescribed by their doctors run the risk of overdosing, recent studies showed. As many as 25 percent of pain patients may exhibit some level of misuse of the drugs, studies have found.
Major problems with abrupt stop to opioid use
With most medical and government resources focused on treatment for more obvious drug abusers, few formal programs exist to help patients dependent on opioids. And there is little guidance for doctors, who are more accustomed to prescribing than un-prescribing drugs. A few hospitals such as the Mayo Clinic and the Cleveland Clinic have intensive outpatient pain-rehab programs, but they are pricy. The Mayo Clinic’s costs roughly $30,000 to $40,000, though most insurance companies cover at least part of the program, which offers help to specifically taper patients off opioids. The three-week intensive program consists of counseling and alternative treatments such as physical and occupational therapy.
Experts who have studied opioid dependence say that, in some cases, it’s too risky to reduce doses until complex psychological problems are under control. But that message isn’t always getting through to doctors. “We have created this monster, and we think we can stop this by just stopping opioids,” said Ajay Manhapra, a Yale University lecturer and addiction medicine specialist who treats patients at the Hampton VA Medical Center in Hampton, Virginia. Researchers who think drug doses can be brought down quickly “are very naive.”
Clare Rhodes, a 63 year old San Jose resident, took OxyContin for more than a decade following a 2001 back operation – first prescribed by a surgeon who promised it wasn’t addictive. She was cut off in 2012, after her doctor was arrested for prescribing opioids to addicts. Even though she had never misused her meds, other pain doctors covered by her workers’ compensation policy refused to take her case, so she was forced to go cold turkey. The withdrawal symptoms lasted a year and were worse than the side effects she got from breast cancer chemotherapy treatment. Rhodes was constantly agitated, suffered diarrhea, broke out in cold sweats and was unable to sleep more than an hour at a time.
Now Rhodes runs a private Facebook group for chronic pain patients. Few patients are being eased off the drug gradually, she said. Many are forced off their meds after their doctors retire or move to another clinic. So many patients on the discussion group expressed suicidal thoughts that she tried to find a psychiatrist or psychologist to offer guidance, but no one was willing to take on that responsibility. “It is an insane situation,” said Rhodes. “They are simply being cut off. It is unconscionable that doctors are doing this to their patients.”
Some have seized on medical opioid addiction as a business opportunity. Breaking Benzo, a telemedicine startup in Palo Alto, California, offers online psychiatry appointments and round-the-clock access to health coaches to help people quit opioids or anti-anxiety drugs called benzodiazepines. The service, available in California, costs $349 a month, doesn’t currently take insurance and plans to expand to at least 10 other states by next year, including hard-hit states Ohio, West Virginia and Kentucky. It is in the process of getting certified for insurance coverage.
“Dumped and abandoned” by doctor
The medical system didn’t quite know how to handle the case of Doug Hale.
A paralegal and computer technician, Hale once enjoyed an active life that included scuba diving, softball and hiking. That was before a progression of medical problems forced him to go on disability. In 1998, he needed major surgery from an obstructed urinary tract. Months later, he developed a painful and mysterious bladder inflammation.
Over the next five years, Hale tried and failed a long list of non-narcotic treatments, including behavioral therapy, nerve blocks and nerve stimulators before doctors started him on opioids in 2004, according to his wife.
He progressed through a laundry list of opioids, including Dilaudid, hydrocodone, oxycodone and fentanyl, before ending up on high doses of methadone, a long-acting opioid painkiller that is better known for its use in treating heroin addiction. Complicating his care was a cerebral hemorrhage in 2006 that left him with short-term memory loss, migraines and seizures.
The final years of Hale’s life were a blur of doctor visits for chronic pain, seizures and other medical problems. Most of his treatment was through his primary care doctor, Stephen Kornbluth, and other doctors at Castleton Family Health Center near Hale’s home in Rutland, Vermont. He also traveled to New Hampshire to see a neurologist and a pain doctor and twice checked into a detox center at a psychiatric hospital for week-long treatments. Nothing worked.
By April 2016, Hale was taking 16 methadone pills a day, a huge dose. His daily intake was many times the level the CDC says can significantly increase overdose risk. It still wasn’t enough to ease Hale’s pain. He started taking two or three additional pills a day and ran out a week early.
Hale and his wife sought additional methadone at an April 9 appointment. The doctor who saw him that day warned that his misuse was “exceedingly dangerous” and could put Hale “at risk for death,” according to the doctor’s notes from the encounter. But worried about severe withdrawal symptoms, she renewed the prescription for a week, until Hale’s next regularly scheduled visit with Kornbluth, who also opted to extend prescribing the drug at a lower dose.
But after Hale ran out early again in May, Kornbluth finally lowered the hammer. He told Hale and his wife, Tammi, that he wasn’t comfortable continuing the drugs beyond a month, and offered to send him yet again to a detox clinic. “Too many times she and he have messed up, though I am not convinced that there is abuse consciously,” Kornbluth wrote in medical records that Tammi Hale later received from the clinic. Hale’s wife says Kornbluth gave the couple a different reason for the discontinuation. “‘I don’t want to risk my license for you any more,’ those were his exact words,” said Tammi Hale. “We felt we had been dumped and abandoned.”
“I remember saying to the wife that I can’t prescribe because there was very inconsistent use, and I couldn’t in good conscience write for that,” said Kornbluth in response. “She kept saying she was very comfortable with that, she understood.” He said he made clear he was not opposed to Hale trying to get opioids from a pain specialist. Far from being abandoned, Hale had numerous consultations with specialists, Kornbluth said.
By mid-July, after his second stay at the detox clinic, Hale had hardly slept in two weeks. Though now entirely off opioids, he had constant tremors and shaking. He broke down crying at a visit with Kornbluth. In September, the Hale couple applied for a last ditch option: a methadone clinic for addicts. But the clinic turned him down on the basis that he wasn’t truly an addict.
On Monday, Oct. 10, Hale and his wife saw Kornbluth. The doctor refused their entreaties to restart the opioids. That day, Kornbluth was still working on finding a program that would take Hale, who, the doctor later wrote in his records, fell through “the cracks” between medical providers.
The next day, Hale was dead. “Can’t take the chronic pain anymore,” he wrote in a wobbly penned suicide note. “No one except my wife has helped me.”