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Pain patients and doctors worry the CDC's new opioid guidelines may be damaging

AILSA CHANG, HOST:

There was a time when doctors readily prescribed opioids to treat pain, but opioid prescriptions in the U.S. have fallen more than 40% in the past decade. It's a response to the country's overdose and addiction crisis. The CDC has also encouraged doctors to prescribe fewer painkillers, but these changes led to unintended consequences for patients with chronic pain. And as NPR's Will Stone explains, the CDC now plans to issue new advice to doctors.

WILL STONE, BYLINE: Cindy Steinberg says many patients like herself, who suffer from chronic pain, often don't want to be on opioids, but they are because nothing else works. Steinberg is with the U.S. Pain Foundation, a patient advocacy group. For years, she's tracked how the CDC guidelines led to unnecessary suffering.

CINDY STEINBERG: I hear from patients every week, and doctors just don't even want to see pain patients. It's gotten to that point.

STONE: When the CDC rolled out the new prescribing guidelines in 2016, they were meant to help doctors make better decisions. The document emphasized the risks of addiction from opioids, advised starting patients on the lowest effective dose and told doctors to try to avoid prescribing high doses. Amanda Votta started noticing the impact on her treatment.

AMANDA VOTTA: Pretty much coinciding almost exactly with the CDC guideline, I started having a lot of problems being prescribed any opioids at all.

STONE: Votta was diagnosed with juvenile rheumatoid arthritis when she was 10.

VOTTA: I've had so much inflammation, it's worn away the cartilage in several of my joints, basically just grinding themselves together at this point.

STONE: Votta is now 41. She's a graduate student in Rhode Island.

VOTTA: I had never had any problems with taking opioids. I always took them as directed.

STONE: But it started getting harder and harder to find a doctor who would prescribe enough.

VOTTA: There were times when I would go and sit in one of the small cubbies in the library and just cry because I was in so much pain.

STONE: There's broad agreement now that the 2016 guidelines were misapplied to pain patients like Votta. Dr. Roger Chou was one of the authors of the guidelines.

ROGER CHOU: The guidelines have always been meant to be just that. They're guidance. They're not regulations, you know? They're not laws.

STONE: But many states did use the guidelines as the basis for new prescribing laws and regulations. Some of these set caps on how much doctors could prescribe and for how many days.

CHOU: The guideline never said that you can't prescribe doses higher than X amount. It says, make an individualized decision, but understand the risks and benefits.

STONE: But that's not what many doctors did.

STEFAN KERTESZ: Something really harmful happened.

STONE: That's Dr. Stefan Kertesz at the University of Alabama at Birmingham. He says some doctors refuse to prescribe any opioids at all.

KERTESZ: There's been a lot of forced stoppage, involuntary reductions, abandonment of patients and suicide.

STONE: Kertesz and others say it all led to a new problem of untreated pain. And yes, some patients even died by suicide because their suffering was so great. Now, the CDC has drafted new prescribing guidelines. Kertesz sees some good changes. The top-line recommendations no longer include specifics about the dose or duration a patient shouldn't exceed when taking opioids. The draft also warns up front that the guidelines should not be used as inflexible standards of care.

KERTESZ: So I look at this revision with a real degree of optimism.

STONE: But some are worried. Dr. Gary Franklin at the University of Washington says the 2016 guidelines gave doctors clear parameters.

GARY FRANKLIN: But now, if you take that help away by removing the specific guidance, it's going to make them uncomfortable again, and they're not going to know what to do.

STONE: Franklin was among the first to raise the alarm about how opioid prescribing in the U.S. was increasing and so were overdoses.

FRANKLIN: The worst man-made epidemic in the history of modern medicine - and it's made by us, by physicians, by surrogates for the drug companies.

STONE: Fatal drug overdoses are at an all-time high, but that's primarily being driven by illicit drugs like fentanyl, not prescription opioids. Steinberg, with the U.S. Pain Foundation, says the proposed CDC guidelines could be better.

STEINBERG: You know, I don't think it goes far enough to protect patients from, really, the egregious, inhumane harms.

STONE: The CDC is now holding a public comment period on the draft guidelines, and that ends April 11.

Will Stone, NPR News. Transcript provided by NPR, Copyright NPR.