Katie Tulley suffers from an incurable bladder disorder so painful that it feels “like tearing skin off your arm and pouring acid on it, 24/7,” she said. On scans, the organ looks like an open sore.
Ms. Tulley, a 37-year-old Louisianan who used to work with autistic children, manages her pain with a fentanyl patch. The opioid gives her a few precious hours out of bed to help her parents, do online volunteer work and occasionally leave home for something other than a medical visit. “I don’t get a euphoric feeling,” she said, noting that she has lowered her dose to avoid feeling woozy and impaired.
Now, because of legal concerns about overdose risk, her doctors have considered stopping her medication, even though she has never misused it. And so, when she recently discovered a suspicious lump in her belly, she found herself hoping it was cancer. “I shouldn’t ‘want’ cancer,” she said. “But at this point it’s the only way to be treated” for her pain.
As many as 18 million patients rely on opioids to treat long-term pain that is intractable but not necessarily associated with terminal illness. In 2016, seeking to curb opioid misuse, the Centers for Disease Control and Prevention introduced guidelines outlining a maximum safe dosage and strongly urging doctors to avoid prescribing for chronic pain unless death is imminent. The guidelines were supposed to be voluntary and apply only to chronic pain patients seeing general practitioners. Instead, they have been widely seen by doctors as mandatory.
As a result, thousands of pain medication recipients have had their doses reduced or eliminated. But this attempt to save people from addiction is leaving many patients in perpetual pain — and thus inadvertently ruining, or even ending, lives.
A Veterans Health Administration study found alarming rates of suicidal acts “following discontinuation of opioid therapy.” Human Rights Watch recently released a report detailing the struggles of chronic pain patients in the United States to find relief and care as a result of government efforts to reduce prescriptions.