People with pain can’t wait two years. That was one of the resounding sentiments shared by individuals living with chronic pain during a public meeting of the Board of Scientific Counselors, National Center for Injury Prevention and Control (BSC, NCIPC). December 4 marked day one of two where members of the BSC, one of the Centers for Disease Control and Prevention’s (CDC) federal advisory committees, presented updates and data relating to health issues, including overdose prevention and opioid prescribing.

The hot button agenda item, which most attendees commented on during the meeting’s public comment period, was the “Background for Updating the CDC Guideline for Prescribing Opioids,” presented by Dr. Debbie Dowel, Director of the Overdose Response Coordinating Unit. Dr. Dowel’s presentation gave an overview of the guidelines since its inception in 2016, noting that the guidelines met their goal in the area of opioid prescribing. When asked why updating the guidelines was now being proposed, Dr. Dowel stated that science is always changing and that there had been instances of misinterpretations of the CDC guidelines.

Another agenda item heavily commented on by the public was the “Charge and Request for Establishment of Opioid Workgroup,” presented by Dr. Robin Curtis, Medical Officer for the Division of Overdose Prevention. Dr. Curtis listed what types of healthcare and medical professionals would serve on the workgroup. Members would be responsible for making proposed revisions to the existing CDC guidelines. In the next two years, the workgroup would publicly release the revisions, accept public comments, and finalize changes based off of the Opioid Workgroup’s findings, recommendations, and input from the public by 2021.

Each person who weighed in during the public comment period was given two minutes. The theme of the comments was desperation. One participant pleaded that federal government agencies not wait to make changes that will help pain patients, saying that many with chronic pain won’t be able to wait. Several comments related to suicide. Forced tapering was also brought up. One woman provided her personal experience with being abruptly cut off from medications. A clinician, who retired early to care for his wife with chronic pain, discussed how she also was forced tapered. Another individual gave testimony while fighting through tears, admitting he was crying from the stories and pleas that had been shared by others.

Speaking on behalf of the U.S. Pain Foundation, I explained the significant impact the existing guidelines have had on individuals living with chronic pain. I also welcomed the opportunity for the U.S. Pain Foundation to serve on the Opioid Workgroup, as Dr. Curtis indicated nominees could be suggested at the meeting. Our statement at the meeting, written by Cindy Steinberg, National Director of Policy and Advocacy, and myself is below:

My name is Shaina Smith and I’m a director for the U.S. Pain Foundation who also lives with chronic pain.

We’ve received countless stories from individuals negatively impacted by the existing CDC guidelines. The guidelines should be updated for the over 50 million Americans living with chronic pain.

Since its release, the guidelines have crippled an already vulnerable and stigmatized population due to misinterpretation by policymakers and clinicians. The misapplication of the guidelines can be punitive, a disservice to patients, and has led to irreparable damage such as forced tapering, prescribing limits, negative health outcomes, the firing of patients and even suicide.

The U.S. Food and Drug Administration has received accounts of serious harm in patients whose medications have been discontinued or the dose rapidly decreased; its April 9 safety announcement warned prescribers that no standard opioid tapering schedule exists that’s suitable for all patients.

The Pain Management Best Practices Inter-Agency Task Force Report notes in section 2.2 titled Medication that there should not be specific dosage limits, such as 90 morphine milligram equivalents, or MMEs, per day, especially since therapeutic needs vary from individual to individual.

In a Fox News series titled Treating America’s Pain: Unintended Victims of the Opioid Crackdown, Part 1 – The Suicides reporters spoke with doctors who said they knew of patients who took their lives after losing access to opioid treatment. With the CDC aware that those with chronic pain have died by suicide, as confirmed by Dr. Debbie Dowel, a lead author of the CDC guidelines, it is evident that change needs to happen sooner rather than later.

The updating process of the guidelines should be transparent, allowing ample time for the public to digest and comment on proposed changes. Pain management doctors, chronic pain patients, and nonprofit pain patient advocacy organizations must serve on the Opioid Working Group, as well as the Guidelines revisions committee. Language that clarifies individuals with chronic pain who have been medically stable on long-term doses of their opioid medication must not be forced off them but be permitted to remain on them if the patient wishes must be included in the updated revision. Thank you for the opportunity to speak to the planned updating of the CDC guidelines for prescribing opioids for chronic pain.

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