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Independent Living News & Policy from the National Council on Independent Living

CDC Guideline Congressional Sign-On Letter

March 24, 2022

We, the undersigned disability rights, pain and drug policy organizations, urge Congress to exercise its oversight authority to ensure that the needs of people with serious pain and/or opioid use disorders who rely on prescribed opioids are not left behind as the Centers for Disease Control and Prevention (CDC) updates its Clinical Practice Guideline for Prescribing Opioids.

The CDC published its draft 2022 update on February 10 with a 60-day comment period. The draft acknowledges the harms that resulted from widespread policy misapplication of its 2016 Prescribing Guideline and takes steps to amend them.  While this language is welcome, the CDC also acknowledged these harms in 2019 in a major medical journal, the New England Journal of Medicine, yet its admonitions failed to filter down to the lives of patients at greatest risk. 

We continued and continue to receive an avalanche of stories from people who were stable on opioids having them suddenly cut off, or being dismissed outright by their providers and left abandoned in care entirely, unable to find a provider willing to treat them.  Many are people with serious disabilities and conditions, and the consequences have been devastating, including increased pain levels, loss of function, overdose, and suicide.

Numerous studies have now affirmed what these people report: opioid cessation, rapid tapering and patient abandonment are all on the rise, subjecting people to harm. One study found the average time of opioid discontinuation was 24 hours, with about half of patients tapered requiring emergency room care or hospitalization as a result. Another found that just changing the dose of someone who has been stable on opioids increases their risk of death threefold. Another found three to fourfold increase in suicide, while a further study linked tapering with use of street drugs. Yet another showed opioid tapering or cessation increased the risk of death and destabilizes people’s health, mental health, and lives. 

Studies further evidence that opioid tapering or cessation is associated with the breakdown of healthcare relationships, and those who lose care are unlikely to regain it.  A recent study of primary care clinics in 9 states found half would refuse to provide care to a prospective patient who requires opioids. 

Such harms have come even to people who were expressly exempted from the 2016 Guideline, including those with cancer and sickle cell disease.  A 2022 study found a significant drop in opioid prescribing for people with cancer after the 2016 Guideline went into effect.  

Fortunately, the CDC’s proposed draft contains many improvements that both acknowledge and aim to ameliorate these harms. The draft underscores that pain is an important public health priority and that care of people with pain must be individualized.  It advises against providers dismissing or abandoning patients from care. In a welcome pivot, the updated draft removes from the mainline recommendations dose and duration limits – two of the more concrete provisions that were mostly widely misapplied – and states that the Guideline is “not intended to be applied as inflexible standards of care.”

It remains unclear, however, how these admonitions and recommendations will prevent continued misapplication and patient harm.  More to the point, just telling doctors not to abandon patients, which they likely already recognize is a violation of law and ethics, will do little to change behavior without addressing the reasons abandonment is happening.  Similarly, just telling policymakers not to use the Guideline inflexibly will not protect against future misapplication when policies and practices are already solidly in place.

Instead, as hindsight offers clear vision, the CDC must draft with the expectations – given history – that its guidance will be used to inform future laws and mandates. And it must take affirmative steps to work with policymakers to undo the harm that continues in real time. The 2016 Guideline was issued as voluntary guidance, but policy actors throughout the healthcare environment — including states, payers, pharmacies and pharmacy benefit plans, health systems, and law enforcement agencies — treated it as a mandate.  Between voluntary guidance and mandates is a gap in authority and accountability into which the lives of far too many vulnerable people have fallen.

Because of this gap, Congressional action is necessary this time around.  We are asking Congress to conduct hearings that document the harm that resulted from the strict application and misapplication of the CDC’s 2016 Guideline.  Hearings should also consider pain management more broadly, including how best to ensure that tools recommended by the updated draft – which covers not just chronic but acute and subacute pain as well – are actually covered by payers so the Guideline does not simply exacerbate current disparities in pain treatment. 

Long-term pain is the primary cause of disability in the US; it is our most widespread chronic health issue and our most costly by a significant margin. One in six people lives with daily pain, and nearly 20 million people experience pain that prevents life activities and work. Pain intersects with and may underlie other widespread public health conditions, including mental health and substance use. We will not adequately address the intersecting public health crises of long-COVID and drug overdoses without addressing pain.

Some eight to 13 million people in the US rely on opioids to manage pain, and many of the 2 million Americans with an opioid use disorder require access to prescribed opioids as well. Both groups continue to face unconscionable barriers to care.

At a moment when the number of both overdoses and people with long-term pain from long-COVID are increasing, Congressional focus on both remains a pressing need. We cannot continue to measure success simply in terms of gross drops in opioid prescribing, especially absent metrics to measure patient safety and well-being.  Notably, as prescribing has dropped since 2012 to per capita levels last seen in the 1990s, overdose deaths have continued to escalate dramatically due to a tainted illicit supply. New solutions are needed to address both overdoses and pain.

Holding hearings concurrently with the CDC’s effort to update its Guideline will help ensure an outcome that truly mitigates harm.