Talk To FDA About Chronic Pain

The FDA wants to hear from people with chronic pain, and is hosting a meeting on July 9, 2018 to collect public input. I have chronic pain, and I know that many of you do as well. This meeting is worth your time.

Management of chronic pain was not the focus of much medical or scientific attention until the 1960s. While prescription practices changed in the 1980s and 1990s with the advent of synthetic opioids, including oxycontin, it wasn’t until the beginning of this decade that pain research and policy became the focus of heavy federal attention.

Recently, that attention seems to have shifted to the opioid crisis, sometimes at the expense of people with chronic pain. There is collective emphasis on data points such as more than 40,000 people died of opioid overdose in 2016. But I had to look pretty hard to find out that only one-third of those overdoses involved a prescription opioid, and many involved another drug as well. It is not in the least bit surprising to me that patients are suffering because the current climate has made it hard, if not impossible, for people in pain to receive appropriate and effective treatment.

So this FDA meeting is very timely, and I hope it will attract significant participation. FDA wants to hear from people with any kind of chronic pain. The two main topics for discussion are:

  1. Symptoms and daily impacts of chronic pain that matter most to patients, including the experiences of pain and how it affects daily life
  2. Patients’ perspectives on current approaches to treatment of chronic pain, including barriers to accessing treatments

You can watch the meeting online and submit input to the public docket. The full details are in this Federal Register notice, but you can register for the webcast of the meeting here and submit comments here.

The meeting is part of FDA’s Patient-Focused Drug Development Initiative, and these meetings are well moderated. FDA also produces a complete transcript and a Voice of the Patient summary of each meeting.

Given the stakes for people with chronic pain, and the difficulties we continue to have in finding effective treatments, this meeting is an important opportunity to speak directly to FDA about what matters most to you.


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5 Responses to Talk To FDA About Chronic Pain

  1. Michelle says:

    Cheers for posting this.

    One question: given that CDC decided to override FDA (even though it is the purview of FDA to do prescription guidance) with its own guidelines on prescribing opioids (based on glorified guesswork and political expediency), will FDA be able to turn around and override CDC on this issue (or, rather, wrest control back from CDC)? I.e., even if we submit comments and FDA reaffirms the rather sensible prescribing guidelines it has issued in the past regarding opioids, will doctors be able to return to that or do the CDC guidelines trump all?

    • Jennie Spotila says:

      CDC’s guidelines are not mandatory, although they are certainly being treated as such, and are not the last word. FDA can issue mandatory guidance on individual drugs.

      FDA uses input from patients in many ways, including assessment of individual drugs. For example, if a lot of chronic pain patients report difficulty accessing opioids, FDA could prioritize approval of non-opioid medications. Or it could decide to have stronger post-marketing safety programs to encourage use of certain medications. So our input on our experiences (good and bad) is important.

  2. jimells says:

    Currently there is an Opioid Panic. A few years ago there was a Meth Lab Panic. The year before that we had the Bath Salts Panic. A year or two from now there will be Some Other Panic. And so it goes.

    What all these Panics have in common is that each succeeding Panic results in more laws, more databases, more repression. Everyone knows their health information is private, right? And that no one is allowed to pass it on without the patient’s permission, right? Wrong. There are always exceptions. Most of them we never hear about.

    The most dangerous exception is the “Prescription Monitoring Program” now in place nearly everywhere. These DEA-funded databases managed by private corporations contain information about each patient’s prescriptions for drugs considered to be especially dangerous, like opioids.

    Pharmacies are forced by law to hand over prescription data without the patient’s permission or knowledge. Physicians are supposed to look up a patient’s past “drug use” before writing new prescriptions, so this is essentially one more blacklist. Along with this many pain patients are now forced to sign a “voluntary contract” and to piss in bottles in order to keep getting the medications.

    It’s all “for our own benefit” of course.

    Don’t worry about all the mistakes in these databases, ’cause you will never find out about them, or exactly what is in your file. You will just be denied your medication, and probably with no explanation. Mistakes and patient suffering are inevitable, but no matter. Rules and obedience are what matter; results are not relevant.

    So this FDA meeting will be one more dog-and-pony show. They will write a report which will sit on a shelf collecting dust, like the “P2P” report of a few years ago. It will do nothing to change the fact that we are all disposable, just like the skin cells we shed every day without a second thought.

    Good thing we have the mass media and public meetings to tell us how free we are. Otherwise we might think we actually live in a police state.

    • Shaz says:

      I was thinking most of these things myself, Jim. I’ll go through the motions just in case it actually comes to something, though. I’m seriously tired of being treated like a junkie because I require the use of pain medication to live as normal a life as possible.

  3. billie moore says:

    Meeting now closed, but written comments will be accepted:

    I wonder how long it will take to (1) code these comments into major categories, and (2) take any action. Years, no doubt, even though this is a critical issue to millions.

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