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Pain Patients to Congress: CDC’s Opioid Guideline Is Hurting Us

WASHINGTON — Patients with chronic pain are suffering from ham-handed efforts to curb opioid overdoses, a series of witnesses told the Senate Health, Education, Labor and Pensions (HELP) Committee on Tuesday.

In particular, the CDC’s 2016 guidelines for opioid prescribing came under heavy fire, as even a self-described supporter of its recommendations admitted the evidence base was weak.

In 2018, Congress passed the SUPPORT for Patients and Communities Act, which included billions of dollars in funding aimed at curbing the overdose epidemic and expanding access to treatment for those with substance use disorders.

About 50 million Americans suffer from chronic pain and almost 20 million have high-impact chronic pain. At the same time, more than 70,000 people died from drug overdoses in 2018, often involving opioids, said HELP Committee Chairman Lamar Alexander (R-Tenn.) at the start of Monday’s hearing.

Even as Congress tries to dramatically curb the supply and the use of opioids, “we want to make sure … that we keep in mind those people who are hurting,” said Alexander.

Cindy Steinberg, national director of policy and advocacy for the U.S. Pain Foundation, argued that well-intentioned efforts to address the epidemic — particularly strategies to tamp down overprescribing — have stoked a “climate of fear” among doctors.

Thousands of patients with chronic pain have been forcibly tapered off their medications or dropped from care by their physicians, said Steinberg. (Physicians in California, under threat of medical-board sanction if patients die from overdoses, have reported similar reactions.)

Such decisions are “inhumane and morally reprehensible,” she said.

Steinberg, herself a pain patient, said she takes opioids in order to function. Eighteen years ago, Steinberg was injured when a set of cabinets fell on her. Since her accident, she experiences constant pain, she said, and throughout the hearing she took breaks from testifying to recline on a cot and pillow.

She was especially critical of the CDC’s opioid guidelines, which included recommendations regarding the number of days and dosage limits for certain pain patients.

“When opioids are used for acute pain, clinicians should prescribe the lowest effective dose of immediate-release opioids and should prescribe no greater quantity than needed for the expected duration of pain severe enough to require opioids. Three days or less will often be sufficient; more than seven days will rarely be needed,” notes a CDC fact sheet.

These recommendations have been “taken as law,” she said.

In 2016, Massachusetts set a 7-day limit on first-time opioid prescriptions, according to the National Conference of State Legislatures, which counted 33 states with laws limiting opioid scripts as of October 2018.

Steinberg said the guidelines should be rewritten.

Because of the CDC’s reputation, “people think that those [guidelines] are based on strong science and they’re not,” Steinberg said. Pain consultants were not involved in the development of the guidelines, she said.

(Voicing similar concerns in November, the American Medical Association passed a resolution opposing blanket limits on the amount and dosage of opioids that physicians can prescribe.)

Steinberg pointed instead to the Pain Management Best Practices Inter-Agency Task Force, a group appointed by Congress of which she is a member, which issued its own draft recommendations in December.

Alternatively, the NIH (which she noted has an office dedicated to pain policy) could be asked to make recommendations, she suggested.

Halena Gazelka, MD, chair of the Mayo Clinic Opioid Stewardship Program in Rochester, Minnesota, pointed out that the guidelines were “intended to advise primary care providers” and not to provide “hard and fast rules.”

“I actually like the CDC guidelines,” Gazelka said. Mayo’s own guidelines are based on the CDC’s. However, “the doses that are mentioned, probably are not scientifically-based, as we would prefer that they would be,” she acknowledged.

Another challenge for some pain patients are situations that pit prescribers against pharmacists, said Sen. Lisa Murkowski (R-Alaska).

“It’s the pharmacists that are refusing to fill the prescription the doctor has prescribed,” she said, blaming the CDC guidance. Pharmacists are following it out of “an abundance of caution,” including in cases where abuse is not suspected, she suggested.

Steinber said, “I think we need public education about pain and the fact that pain is a disease itself. … Pharmacists are not getting proper training in that, I don’t think anyone is getting proper training in pain.” She asserted that veterinarians get nearly 10 times as many hours of pain management training as do medical students.

Andrew Coop, PhD, of the University of Maryland School of Pharmacy in Baltimore, returned to the CDC guideline. “I think those guidances on the quotas, I think they’ve been taken too far and that needs to be rolled back.”

Improving Care

In exploring other ways to improve care for patients with chronic pain, Gazelka recalled the pain clinics that existed 30 years ago, which included a physician, a psychologist, and a physical therapist.

“It would be ideal to return to a situation where people could have all of that care in one place,” Gazelka told MedPage Today after the hearing. But most small practices and even institutions may not have the same blend of clinicians, and the cost could be “prohibitive,” she said.

Access to specialists also poses a problem, noted witnesses as well as senators.

In her own pain group, it takes patients more than a year to get an appointment with pain specialists, Steinberg said. She encouraged Congress to “incentivize” pain management as a specialty.

Gazelka agreed and suggested leveraging telemedicine and electronic health records to extend the reach of existing specialists.

Telemedicine can allow primary care physicians to consult with pain management specialists, she said. Also, in Mayo’s own controlled substances advisory group, she and other specialists review cases submitted by primary care clinicians and provide advice directly into the patient’s medical record. However, Gazelka noted that privacy protections in some states might disallow that.

Gazelka noted that insurance coverage can be a barrier to non-opioid alternatives. For example, the Mayo Clinic has a Pain Rehabilitation Center staffed by specialists in pain medicine, physical therapy, occupational therapy, biofeedback, and nursing that aims to treat pain without opioids. But Medicaid won’t pay for it, she testified.

Witnesses also spoke of efforts to develop non-addictive painkillers, such as NIH’s Helping to End Addiction Long-term program.

Steinberg called these efforts “a great start” but noted that only 2% of the NIH’s budget is directed towards pain research. Funding should be “commensurate with the burden of pain,” she said.

Finally, Coop pressed the committee to take seriously the potential of medical marijuana.

Acknowledging that it’s a controversial area, he stressed the need for “good consistent, well-designed clinical studies with good consistent material,” referring to the type of marijuana used.

But speaking to reporters after the hearing, Alexander was cautious. “I’ve supported giving states the right to make decisions about medical marijuana. That’s about as far as I’m willing to go right now.”


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