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 Painissued in a letter from the agency to ASCO, ASH, and NCCNcomes 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

19 thoughts on “CDC Issues Key Clarification on Guideline

  1. Linda

    Cancer affects lots of people. A major legal victory against misapplication of the CDC Guidelines was won because of Sickle Cell https://www.reviewjournal.com/local/local-las-vegas/las-vegas-hospital-ordered-to-pay-nearly-43m-to-family-of-dead-woman-1582367/?fbclid=IwAR2HO9RnJwNzyvz7Ov_JpeREIQKd-2y9COITboOxvcfcelS_D3y0Vji1amQ

    Winning lawsuits by specific groups and diagnoses might help in the future, but ALL PEOPLE WITH PAIN need to be treated appropriately.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      Agreed – it helps to have a diagnosis with severe pain as a known, documented symptom, so they can’t argue that it’s just a “psychosocial” problem (they neglect the “bio” component entirely).

      Liked by 1 person

      Reply
      1. Dee199

        Hi Zyp, found the letter, thank you so much! Can you share where you found this? I’m looking for the original source. I completely understand if you can’t Thank you so for sharing this

        Liked by 1 person

        Reply
        1. Zyp Czyk Post author

          I found it on the website of the American Society of Clinical Oncology (ASCO) – a link is in the first line/title of my post. The other medical organizations this letter was sent to also posted articles about it.

          Like

          Reply
  2. John S

    Is there any attorneys who want to represent thousands of Chronic Pain Patients who have been cut off their pain meds or represent the hundreds of people that have taken their own life because they was forced off their pain meds?

    Liked by 2 people

    Reply
  3. canarensis

    About frigging time. The first sentence on the 2nd page appears to cover all chronic pain conditions, but you know that no one (no doc or insurer) will pay attention to it, or even consider it if the patient points it out to them. I can’t believe the jerks didn’t do anything sooner –ditto for their big warning on not cutting CPPs off cold turkey…but where’s the warning against involuntary dose reductions? They have many of the same effects of abrupt cessation, e.g. suicide.

    I saw that Florida is suing one of the big pharma chains for selling opioids. I’m expecting some state to sue the companies that make pill bottles & sticky paper for labels next. Money grubbing *%$#%s.

    Liked by 2 people

    Reply
    1. Zyp Czyk Post author

      Because sickle cell anemia can be “seen” in bloodwork and cancer can be seen in images, the CDC thinks their pain is more “real” than our invisible pain, which they will always suspect because we can’t “prove” it.

      Like

      Reply
      1. canarensis

        The way things are going I have to wonder if compassion isn’t a completely dead concept in this country. it’s always been perceived as “weak” among a certain percentage, and another (sometimes overlapping group) has always been convinced that others’ suffering is caused by their own bad habits or wicked ways (until the judgers get hit with something dire, at which time the suffering is unjust & they clearly deserve relief –for themselves only). I’m convinced those kinds of people will never go away. But as we’ve observed, optimism is not one of my major characteristics.

        Liked by 2 people

        Reply
        1. Zyp Czyk Post author

          It’s hard to remain optimistic, but I find pessimism to be too painful and anxiety-inducing so I have to talk/think myself away from those depths. Mostly I’m successful, but when I’m not… it’s awful.

          Liked by 2 people

          Reply
      2. Dee199

        I agree, this clarification doesn’t really change anything. Until the CDC makes an announcement in Main Stream Media this letter to 3 cancer docs doesn’t mean much. I had hope when I heard about it but I just don’t see it. It seems to be open to interpretation

        Liked by 1 person

        Reply
        1. Zyp Czyk Post author

          You’re right, it’s vague enough to leave lots of room for misinterpretation, but it’s a step in the right direction that could be the beginning of the end of opioid prohibition.

          ________________________________

          Liked by 1 person

          Reply

Other thoughts?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.