Pained patients

Every day, Charlotte Elmore suffers through the opioid crisis. She trembles at media coverage of overdoses. She, like 40,000 people in her Facebook group, mourns deaths connected to prescription painkillers.

Elmore’s concerns center not on the scourge of addiction. Rather, she fears for the fate of people such as herself: patients who use their opiates as prescribed, under physician care, yet nonetheless find their medicine restricted.

The U.S. government has prioritized reducing opioid abuse by reducing prescriptions—for hydrocodone, morphine and oxycodone, notably. The feds have done so, primarily, by intensifying scrutiny of practitioners and pharmacists; state regulators have followed suit. (See “Clamped down,” Healthlines, Aug. 23.) Butte County is among the areas with community prescribing guidelines that recommend a judicious approach to pain pills. (See “An uphill battle,” Healthlines, Nov. 2, 2017.)

Elmore, an Oroville resident, feels these cures have side effects. She says she knows patients who have had their dosages reduced by doctors or pharmacies to meet governmental targets—some “so drastically” that the medication “doesn’t help them any longer.” She knows patients who have gotten cut off entirely. She knows of 38 who subsequently committed suicide, “and there are a lot more people in the [Facebook] pain group that are talking about suicide, thinking about it.”

Elmore relates. Early into 23 years of chronic pain from a spinal injury, she decided to forgo medication. Being homebound for months, relegated to the bed or couch, changed her mind. She’s adamant about not reliving that experience.

“I do understand that there are people who take [opiates] for pleasure. But the pain people are not like that,” Elmore said. “We don’t take it to ‘get high.’ We just take it to be able to do a load of laundry or dishes ….

“When you don’t have any quality of life, and you have no hope, it’s really easy to get depressed.”

The Chronic Pain Support Group on Facebook led her to Don’t Punish Pain, an organization that coordinates rallies to lobby for legislation and give a voice to chronically ill and pained patients. Elmore, a state organizer, joined around four-dozen Don’t Punish Pain activists Sept. 18 in Sacramento; she is arranging another rally at California’s Capitol for Jan. 29.

A major point of contention for Elmore and Don’t Punish Pain relates to statistics. The U.S. Centers for Disease Control and Prevention, or CDC, has released figures often cited by media showing overdose fatalities continuing to rise as prescriptions have fallen. Minimized or overlooked, Elmore says, is how the CDC lumps all opioids into this metric—including heroin, an illicit street drug; and fentanyl, a highly concentrated narcotic, manufactured both as a legal pharmaceutical and illegally.

According to a study by the nonprofit American Action Forum, utilizing CDC reports, “the annual growth rate of deaths involving prescription opioids slowed from 13.4 percent before 2010,” when prescribing reduction measures began, “to 4.8 percent after.” Death rate increases from heroin “surged from 4.1 percent before 2010 to 31.2 percent after”; fentanyl, “from 13.7 percent to 36.5 percent.”

Dr. Andrew Miller, Butte County’s public health officer, said by phone that parsing the data this way presents an oversimplification. Referencing the book Dreamland: The True Tale of America’s Opiate Epidemic, Miller noted that 80 percent of new heroin users in the authors’ study had used prescription opioids first.

“These are not groups that are necessarily divorced,” he said. “I actually try to avoid any time when we’re separating people into the ‘good people’ who are doing the right thing and the ‘bad people’ who are doing the wrong thing, because we’re losing lives from both of those groups. I just don’t find that a useful distinction.”

Miller had not heard of Don’t Punish Pain, he said, but “I deal with lots of people who are similarly concerned about access to medications.” He also hadn’t heard of suicide related to access, whether through studies or individual accounts.

“Anecdotal stories are not the way we can make decisions [on public policy],” Miller added. “I think that you have to look at all of the different pluses and minuses—and that’s definitely one that can be considered—but it’s certainly not that simple.”

A family practice doctor in Chico for 14 years before becoming county health officer, Miller understands that patients and providers are both “in a really difficult spot, and are going to be in a difficult spot for a while, because we had one approach to this family of medicines and now that approach is evolving.”

Elmore has seen the evolution firsthand. She recalls the 1990s and 2000s when physicians considered pain the “fifth vital sign” and prescribed opioids liberally.

“Twenty years ago, doctors were giving me tons of medication, to the point where I didn’t want that much,” she recalled. “Two years ago, the pendulum swung totally in the opposite direction.”

Elmore’s pain comes from nerve damage in her spine. While working as a certified nursing assistant at a senior care home in Arkansas, she ruptured a disk while picking up a patient to put on her pants.

“I know I’m not supposed to [lift patients],” she said, “but that’s the last thing I had to do before I could go home for the day. I felt a pop, and a few months later I started feeling pain—and that’s when my journey began.”

She’s run the gamut of treatment forms. She currently has a neurostimulator, an implanted device that acts like a pacemaker for pain by sending faint electrical pulses to override nerves transmitting pain signals. Only opiates have provided significant relief.

“I can understand wanting to help addicts, because they are dying,” Elmore said. “The way pain patients are being treated, in my book, it’s torture—there’s no other way to put it.”

That patients feel so frightened, and would go so far as suicide, worries Miller.

“I feel for anybody [who’s] in pain,” he said, “and I don’t think anybody should be punished. I actually think the effort to be more responsible with pain medication is an effort to keep people from being punished—from losing their lives, from losing their quality of life [with addiction]—and I want those medications to be governed by the same rules we use for every other medication, which is a balance of the good and the harm.

“I will suggest, for two decades, harm was not factored into that calculation at all and that’s what people got used to.”