On November 3, the Centers for Disease Control and Prevention (CDC) released its final 2022 Clinical Guideline for Prescribing Opioids for Chronic Pain. Since the introduction of the CDC Guideline in 2016, there has been overwhelming and widespread evidence of serious adverse consequences to thousands of pain patients including forced tapering, hundreds of documented suicides, sudden loss of access to medication triggering withdrawal, dismissal from physician practices, inability to find medical care, and loss of function and quality of life. 

The U.S. Pain Foundation has been a staunch advocate in speaking out about the damage and harm the Guideline has needlessly caused those with chronic pain. We have submitted comments, been interviewed for articles, taken part in panel discussions, podcasts, talk shows, and more to highlight the missing patient voice in the national conversation and controversy surrounding the Guidelines.

Cindy Steinberg, national director of policy and advocacy for U.S. Pain, was interviewed following the release of the document this afternoon by a national news outlet.

Below are her responses to the questions posed.

What stands out to you about the new guidelines?

The CDC has missed a huge opportunity to improve the abysmal state of pain care in this country.  As a public health agency, the CDC has an enormous megaphone and spotlight. Chronic pain affects 50 million adult Americans; 20 million of whom live with high-impact chronic pain that destroys their ability to function on a daily basis.

While this final version has small improvements over the original 2016 Guideline, it does not go nearly far enough in correcting the serious problems that arose from the 2016 Guideline.  

Since the CDC Guideline controversy, Congress actually mandated a task force of pain experts to report on best practices in pain management and to scientifically review the Guideline. The final report of that panel—the HHS Pain Management Best Practices Inter-Agency Report (the CDC Guideline review begins on page 69)—released in 2019, was widely praised by over 160 leading medical organizations. The CDC could have shown the spotlight on the findings of that report, but they did not.

Do you have any concerns about the updated recommendations?

Yes.  I have 5 major concerns:

    1. From a scientific perspective, the Guideline is based on fundamentally weak evidence. 10 out of the 12 guidelines are based on “very weak” or “weak” evidence.

    2. Second, the exemption of certain pain conditions—of which sickle cell disease has been added to Cancer, Palliative Care and End-of-Life Care—as being more worthy of pain control where the stated “risks” and “harms” don’t apply.

      We acknowledge the severe pain those living with sickle cell disease experience on top of the barriers and disparity in care many in the sickle cell disease community face. However, pain is pain. There should not be exclusions for any specific conditions that cause pain. A person with any given pain condition could be in much worse pain for longer duration than a person with one of the excluded conditions.

    3. The Guideline repeatedly makes reference to cautions and warnings regarding increasing dosages above 50 milligrams morphine equivalence (MME) through much of the supporting narrative in the Guideline. These dosage cautions and limits are arbitrary and unscientific, and have caused widespread harm, including prosecution of doctors who prescribe above those amounts and forced tapering of patients who are receiving dosages above this arbitrary amount.

    4. Additionally, the Guideline has clear bias against opioid therapy, continually emphasizing the perceived risks and harms while failing to discuss any benefit for pain relief when taken appropriately under medical supervision. Opioids do not help everyone with pain, but for millions of Americans who took them appropriately, they were a lifeline that allowed them to have a life worth living.

      Opioids are still one of the most effective pain relief tools we have. Despite all the hype, in repeated studies the actual risk of addiction in medically-managed pain patients is between less than one- and eight percent. Stated another way, between 92% to 99% of chronic pain patients on opioid therapy do not become addicted to their medication.

    5. Finally, the Guideline fails to acknowledge the risks and harms of enduring prolonged pain when other therapies have proven inadequate or contraindicated, especially severe, unremitting, daily pain.

      Do you feel they do enough to take into consideration the concerns of pain patients?

      I don’t. The reality is that the 2016 Guideline has caused egregious harms over the past six years to perhaps hundreds of thousands of pain patients. Patients have been force tapered off medication and dismissed from physician practices leading to withdrawal, inability to find medical care, extreme anxiety and depression, loss of function, and quality of life. Horrifically, there have even been documented suicides because of individuals losing access to the treatment–opoioids–that kept them stable and contributing members of society. 

      I, along with the U.S. Pain Foundation, have received thousands of calls, emails, and letters over the past six years from desperate pain patients who were forced off opioid therapy as a result of the Guideline. They are so debilitated by unrelenting pain that they are unable to work, sleep, or take care of their families.  I still receive these heartbreaking messages every week.  I literally have three in my inbox right now.

      Does the document go far enough to course correct some of the problems that happened as a result of the 2016 guidelines?

      No, it does not. If CDC was serious about a course correction, this new version would clearly state right up front what has changed and why.  It would state that the specific dosage limits and days duration of therapy have been removed, and that clinicians must work with patients who do benefit from opioids to ensure the optimal dosage for that individual patient. 

      But it does not do that. 

      In fact, it is not until page 11 of the official Guideline (published on November 4, 2022), after ten dense pages of prose that Box 3 finally reveals what the new Guideline is. Why is the CDC burying the Guideline on page 11, and why don’t they clearly show a comparison of the 2016 vs. the 2022 version so clinicians can quickly ascertain what has changed?

      Do you think this will make a difference for patients?

      I don’t think this will make any appreciable difference to the lives of pain patients, and that is a real shame and a lost opportunity.  We have no perfect solutions for pain. We don’t even understand the pain system in the human body yet.

      Opioids are one tool in a large toolbox of therapies, devices, procedures, complementary treatments and medications for pain.  

      The best way to manage pain at present is through an individualized, multidisciplinary approach combining a number of different treatments.  CDC missed the opportunity to clearly educate doctors and patients on the full range of possible treatments.

      Does it feel like a different outlook/philosophy than the 2016 doc?

      I think you are right on target with that question.  Given all the controversy, uproar and problems with the CDC Guideline, a different and fresh outlook is exactly what was needed here.  Instead, it feels like CDC dug in their heels and doubled down on a troubled and misguided solution.