CDC Issues Key Clarification on Guideline

CDC Issues Key Clarification on Guideline for Prescribing Opioids for Chronic Pain | ASCO – April 9, 2019

I’m angry that the CDC issued this clarification for only three discreet conditions

• cancer patients,
• cancer survivors, and
• individuals with sickle cell disease.   

Because it so carefully carves out these three very specific conditions for special notice, it seems to imply that any other conditions not listed are currently being understood and implemented as intended, and I’m afraid it could become even harder for chronic pain patients to get opioid relief.

I can’t help but notice that “end-of-life” care is excluded from this list, even though it was, along with cancer, listed in the CDC guideline as specifically exempt. Why clarify the guideline for cancer patients and cancer survivors but not “end-of-life” care?

I’m also surprised that this is the first article I’ve found mentioning such a clarification, even though the actual letter from the CDC is dated over a month ago: February 28, 2019.

Now that one such clarification has been listed, I wonder if it might be easier to demand clarification for other conditions, like Fibromyalgia and EDS.

The American Society of Clinical Oncology (ASCO), the American Society of Hematology (ASH), and the National Comprehensive Cancer Network® (NCCN) are pleased to acknowledge receipt of a key clarification from the Centers for Disease Control and Prevention (CDC) on prescribing opioids to manage pain from certain conditions.

The clarification regarding CDC’s Guideline for Prescribing Opioids for Chronic Pain—issued in a letter from the agency to ASCO, ASH, and NCCN—comes as a result of a collaborative effort by these organizations to clarify CDC’s opioid prescribing guideline in order to ensure safe and appropriate access for

• cancer patients,
• cancer survivors, and
• individuals with sickle cell disease.   

CDC’s clarification letter notes that the agency’s guideline was developed to provide recommendations for primary care clinicians who prescribe opioids for patients with chronic pain outside of active cancer treatment, palliative care, and end-of-life care.

The letter conveys that CDC’s guideline is not intended to deny clinically-appropriate opioid therapy to any patients who suffer acute or chronic pain from conditions such as cancer and sickle cell disease,…

No, not “like” cancer or sickle cell, but only pain with these very specific diagnoses alone.

…but rather to ensure that physicians and patients consider all safe and effective treatment options for pain management with the goal of reducing inappropriate use.

“This clarification from CDC is critically important because, while the agency’s guideline clearly states that it is not intended to apply to patients during active cancer and sickle cell disease treatment, many payers have been inappropriately using it to make opioid coverage determinations for those exact populations,” said ASCO Chief Executive Officer Clifford A. Hudis, MD, FACP, FASCO.

But this throws all other kinds of chronic pain under the bus.

These three professional groups seem to have forced the CDC to do what the rest of us have been desperately asking for. I have to wonder if it’s because of money flowing somewhere, as money has been shown to affect almost all aspects of healthcare, now that our care is in the hands of corporations with a “moral imperative” to seek profit.

Why was clarification was issued only for such limited diagnoses while the vast majority of chronic pain patients are left to suffer inappropriate forced tapers?

The CDC singles out pain from sickle cell and cancer but seems to think it’s ok for the rest of us to suffer and eventually die… This makes absolutely no sense.

I’m appalled that the CDC seems to know about inappropriate opioid restrictions for patients and even has a process to publish “clarifications”, yet has not issued one to address the chronic pain being untreated and leading to suicides.

The CDC’s clarification further notes that clinical practice guidelines addressing pain control for survivors of cancer, such as the American Society of Clinical Oncology Clinical Practice Guideline on Management of Chronic Pain in Survivors of Adult Cancers and the National Comprehensive Cancer Network Clinical Practice Guidelines in Oncology: Adult Cancer Pain, which were published and/or updated more recently than CDC’s guideline, provide important guidance on the unique considerations when using opioids to control pain in cancer survivors without worsening the current opioid crisis.

The only thing unique about cancer pain is the cancer, while many, many other conditions also lead to chronic pain that can be as bad or worse.

“Pragmatic approaches for pain management exist at the intersection of multiple health concerns,” said NCCN Chief Executive Officer Robert W. Carlson, MD. “Our guidelines help clinicians to assess the risk of inappropriate substance use, while still ensuring people with cancer don’t suffer unnecessary, severe pain.

But all other chronic pain (bio-psycho-social) is left to run rampant to decimate our functionality (bio), crush our spirits (psych), and restrict our participation in life (social) until we reach a point where the only rational choice remaining becomes suicide.

CDC’s acknowledgement that clinical decision-making should be based on the relationship between physicians and their patients is important and in the best interest of people with cancer and sickle cell disease.”

But this is exactly what is NOT happening: forced tapers are being instituted regardless of the individual patient.

In November 2018, ASCO, ASH, CDC, and NCCN representatives met in-person to discuss concordance and variation among current guidelines for chronic pain management and develop a strategy to resolve inconsistencies as well as improve communication of existing recommendations.

So here we can see how it was accomplished; couldn’t our national pain organizations do the same?

I think the organizations we are part of should demand their own clarifications.

I feel lucky that my own diagnosis of EDS is also one that is understood, at least by real doctors, to be painful. The EDS society could undergo the same process these other groups did.

Now that one clarification” has been made, it will be harder for the CDC to deny others the right to receive the same treatment. The EDS Society is in a good position to work on this.

External reviews had previously identified perceived inconsistencies among existing guidelines and had noted concern that such inconsistencies may be causing inadvertent confusion in the healthcare community.

The organizations also discussed issues related to the CDC guidelines and agreed jointly to seek clarification of the guidelines regarding their applicability to patients with cancer and sickle cell disease. Following the meeting, ASCO, ASH, and NCCN sent a letter to CDC urging the clarification.

“People with sickle cell disease suffer from severe, chronic pain, which is debilitating on its own without the added burden of having to constantly appeal to the insurance companies every time a pain crisis hits and the initial request is denied,” said ASH President Roy Silverstein, MD.

This is no different from all the other causes of chronic pain.

“We appreciate CDC’s acknowledgement that the challenges of managing severe and chronic pain in conditions such as sickle cell disease require special consideration, and we hope payers will take the CDC’s clarification into account to ensure that patients’ pain management needs are covered.”

So he’s saying that chronic pain conditions, like EDS and Fibromyalgia, do not require “special consideration” to “ensure that patients’ pain management needs are covered.”

I’m furious and outraged that most of our chronic pain has been specifically excluded from clarification or “special consideration”.

---

Here’s a small image of the CDC’s clarification letter:

Here is a link the PDF of the CDC’s clarification letter:
https://www.asco.org/sites/new-www.asco.org/files/content-files/advocacy-and-policy/documents/2019-CDC-Opioid-Guideline-Clarification-Letter-to-ASCO-ASH-NCCN.pdf