Pain Patients Testify to Congress

Pain Patients to Congress: CDC’s Opioid Guideline Is Hurting Us – by Shannon Firth – Med Page Today – Feb 2019

Now we just have to hope Congress really listened and “heard” what pain patients are trying to make clear.

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.

About 50 million Americans suffer from chronic pain and almost 20 million have high-impact chronic pain.  

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

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

I’ve heard this process of forced tapers called many names, but I like Ms. Steinberg’s description, which touches upon our “humanity” and implies that this action is “blameworthy”. (I’m a word fanatic and always appreciate properly used and very precise terms with just the right flavor of implications.)

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.

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.

Yes, one would think that the CDC wouldn’t just issue guidelines without a foundation in science but in this case, they handed off the responsibility to a group of anti-opioid activists who did as they wished and painted even appropriately prescribed opioids as “dangerous”.

(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.”

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.

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.

Perhaps only a fellow pharmacist can understand how horribly wrong it is to place prescribing responsibility on pharmacists, who don’t even have access to a patient’s medical record and are thus unable to base their decisions on the individual patient’s condition.

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.

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 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.

2 thoughts on “Pain Patients Testify to Congress

  1. daniel cook

    An alarming fact my PMP shared with me as I search to find a new pain mgt doctor who will take me as a patient(18 years previous pain mgt with flawless record of total compliance) is that Pain mgt doctors are now using the prescription monitoring systems to decide what new patients they will see.

    Liked by 1 person

    1. Zyp Czyk Post author

      Well, that’s actually what they’re supposed to do.

      Unfortunately, the PDMPs are error prone and have been known to incorrectly “flag” patients based on proprietary algorithms that look through all kinds of data, (including where we live and who we live with).

      We’re considered so insignificant that algorithms are being used to decide our fates.



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