Add Your Organization as a Signatory to NCIL’s Chronic Pain Advocacy Letter to Congress

Because of policies aimed at addressing the opioid crisis through limiting prescriptions, people in pain are facing increasing barriers to accessing their medication and managing their pain. Many who have relied on opioids, often for decades, are seeing their medication forcibly reduced or eliminated; some are being denied medical care altogether.

Because many people with disabilities live with serious or chronic pain, our community is disproportionately affected by these policies. These harms – which may range from increased pain, to loss of function, to suicide or resorting to illegal substances – have finally been acknowledged by the Centers for Disease Control and Prevention (CDC) and the Food and Drug Administration (FDA).

Nevertheless, rigid, one-size-fits-all policies have already been enacted in over half of states and adopted by the major pharmacy chains and insurers. Similar policies continue to be proposed at both federal and state levels. The harm that has been caused cannot be undone, but action now can stop further harm from occurring.

Therefore, NCIL has drafted a letter, which will be sent to Congressional Leadership and leaders of key committees working on these issues. We are writing to educate Congress about recent actions by the CDC and the FDA that call out the dangers of these policies, and to ask Congress to work with their disabled constituents and disability rights organizations when developing future policies.

As organizations that advocate for the rights of people with disabilities, we hope you will add your organization’s name as a signatory to this letter. You can add your organization at the link above or by emailing [email protected]. The deadline to sign on is Thursday, June 20, 2019.

Additional Information:

The most problematic policies are based on misapplication of the CDC’s Guideline for Prescribing Opioids for Chronic Pain. These include:

Strict limits on opioid prescribing for acute pain, often of 3-7 days
Applying dosage guidance designed for opioid naïve individuals to people currently taking opioids and the physicians who care for them
Mandatory or abrupt tapering off opioids and patient abandonment
Overreach to unintended populations

Additional information on each of these can be found in the letter.

The CDC and FDA recently issued several clarifications as a result of the harms being caused to people with chronic pain:

A clarification was published in the New England Journal of Medicine (NEJM) by the CDC Guideline authors, along with a strong press release, addressing the widespread misapplication of the Guideline and the resulting harms.
The CDC Director issued a letter (PDF) in response to a letter by 300 doctors and former drug czars making it clear that the CDC does not support abrupt or mandatory tapers or discontinuations.
The CDC wrote a letter to oncologists and hematologists (PDF) addressing previously expressed concerns with overreach of the Guideline. The letter also states the Guideline was never intended to deny access to opioids for anyone with chronic pain.
The FDA issued a warning against abrupt tapers and sudden discontinuations and announced a label change in response to reports of serious harm.

In light of these recent clarifications and warnings, it is imperative that policymakers understand the impact of the current policy focus and redirect their efforts toward comprehensive pain care. While we have significantly decreased access to opioids, there has not been a responsive increase in access to or coverage of non-opioid treatments. People with pain need access to the full spectrum of available modalities of pain treatment.

As organizations advocating for the rights of people with disabilities, we hope you will join these efforts to call on Congress to focus on the needs of people with chronic pain.

Further Resources: