Anne Fuqua keeps a list of suicide deaths. She’s chronicled hundreds of cases of chronic pain sufferers who have killed themselves after losing access to opioid medication since 2014. Recently, she almost became an entry.
Ms. Fuqua, a former nurse, has an incurable genetic disorder that causes agonizing spasms and shaking. She can only function when she takes opioids. She’s one of the estimated five million to eight million Americans with chronic pain who regularly rely on them. But in November, her doctor’s license to prescribe controlled substances was suspended by the Drug Enforcement Administration — marking the second time she’s been left to fend for herself to avoid pain and withdrawal because of law enforcement action against a pain clinic.
Between the mid-1990s and the early 2010s, the number of opioid prescriptions written for Americans roughly doubled, driven by dishonest pharmaceutical marketing campaigns and unscrupulous entrepreneurs who opened so-called pill mills to sell drugs. Medical guidelines, legislation, law enforcement and other measures have since returned painkiller prescribing to pre-crisis levels. But because people who lose access to medical opioids are rarely provided with immediate treatment (whether they are experiencing pain or addiction or both), the result has been more overdose and suicide deaths, not fewer.
Despite these dismal facts, American medicine and law enforcement continue to fight the last war. Policymakers still operate under the assumption that too many opioids are being prescribed. Overdose deaths — including those among adolescents — are now overwhelmingly caused by street fentanyl, not prescription medications. And fatalities have nearly doubled since 2012, in concert with the decline of the medical supply.
To make matters worse, the D.E.A. has just reduced the permitted quota that opioid manufacturers can produce for next year by 5 percent — even though Kaiser Permanente, a major health insurer, recently told its patients that it may slash their doses because there is already a shortage. This scarcity, too, is linked to the last war: Distributors and pharmacies promised to minimize availability as part of opioid litigation settlements. But this course correction can create difficulties for people who need opioids to function amid chronic pain.
Earlier efforts intended to help patients like Ms. Fuqua — and the millions of Americans like her — have failed. Both the Food and Drug Administration and the Centers for Disease Control and Prevention have issued warnings about the life-threatening dangers of cutting or ending opioid prescribing involuntarily. The C.D.C. even published revised prescribing guidelines in 2022, which emphasize that its recommendations are not mandates and that patient consent is important when determining whether to reduce or eliminate opioids.
Moreover, the Supreme Court ruled unanimously in June that only doctors who show provable criminal intent should be prosecuted for overprescribing. Nonetheless, the D.E.A. continues to target physicians who have large numbers of patients on high opioid doses or on combinations of opioids and other drugs that it considers “red flags.”
Ms. Fuqua estimates that she knows dozens of people who have lost more than one doctor to law enforcement action. When her most recent doctor’s license was suspended, she said, “there were no provisions for ongoing care for patients,” and added that the only thing she was given was a list of emergency rooms and a flier with the numbers for two addiction treatment hotlines.
“I am barely able to get by on my own,” she said, noting that the condition she suffers from, dystonia, “went from well controlled to not controlled at all.”
“Entire body is shaking and jerking 24/7,” she said.
Ms. Fuqua said she has contacted dozens of doctors trying to find care. She also called the C.D.C.’s Opioid Rapid Response Program, which is intended to help when pain clinics are shut down or large numbers of opioid patients lose doctors for any reason. “It was almost like they thought I was out of line, even ridiculous, for calling them,” she said. The program’s management admits it has difficulty finding physicians to help such patients, and is in the preliminary stages of considering proposals to study why they get rejected.
Patient advocates say the answer is simple: Doctors who agree to take significant numbers of chronic pain patients who need opioids rightly fear law enforcement scrutiny. Physicians with more than a few high-dose patients will immediately stand out in prescription monitoring databases, even if they are pain specialists.
So what can be done to help people with intractable pain that only responds to opioids? First, the surgeon general needs to send another letter to health care professionals, as Dr. Vivek Murthy did when he announced the publication of the 2016 C.D.C. guidelines for opioid prescribing. The new letter must inform providers about the 2022 update and, this time, strongly warn against involuntary dose cuts for existing patients as a way to reduce overdose risk. The initial guideline warranted this high level of national attention, and it hurt people in pain — surely an update intended to improve their treatment would deserve equivalent publicity.
Second, the U.S. attorney general needs to send a similar letter to the D.E.A. and to its prosecutors, instructing them to stop pursuing doctors simply because they prescribe high doses of opioids or potentially risky drug combinations. If there are no other signals of criminal intent, this is a matter of medical judgment and possible malpractice, not an issue that should be handled by federal law enforcement. And when agents find physicians who actually are dealing drugs, they and agencies like the C.D.C. need to ensure that there is no disruption in pain or addiction care for patients, before busting doctors.
Patients who are abandoned to withdrawal and untreated pain have an increased overdose death risk of nearly 300 percent, and their risk of suicide is also significantly elevated. If thousands of them hadn’t been cut off in the first place, the enormous street fentanyl market that now exists might have been minimized rather than given rocket fuel. It is both cruel and nonsensical to increase patients’ risk of overdose death and suicide in an attempt to reduce these harms.
To permanently solve this problem, Congress needs to pass legislation to provide a safe harbor for patients with intractable pain and their doctors. People like Ms. Fuqua who have a clear, documented need for opioids should not have to live as though each time they successfully pick up a prescription it’s a “stay of execution,” as she put it.
It is not the fault of people who suffer pain that America has an addiction problem. Denying them access to needed medication helps no one. At least one man and his wife have already died by suicide following the closure of the clinic Ms. Fuqua attended.
Her list now contains 932 suicide deaths, 235 of which are documented with materials like news articles, suicide notes, family accounts and medical records and include the patients’ full names; the rest are culled from sources that do not include names, such as medical case reports. She should never have to add another entry.
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