Advice on Commenting to the HHS Task Force

Tell the Task Force! Advice on Commenting to the HHS Task Force on Pain Management – National Pain Report – By Richard A. (“Red”) Lawhern, Ph.D. – Jan 2019

I sympathize with anybody who may find the Task Force draft to be a tough read. The text is ~60 pages with 446 references.

That’s why I summarized it for you over 3 posts here:

This report is a very positive development for pain patients, especially because (in part 2 of my posts) it specifically rejects the CDC guidelines that have caused us so much disability, distress, and death.

Finally, a government publication on pain and opioids that isn’t flippantly dismissive of pain or fearmongering about opioids.

It is written by doctors to inform legislators and other doctors

about what needs to be done to resolve gaps or conflicts between existing best practice standards for the management of all kinds of pain.

At least 25 experts in several working groups contributed to the writing.

Not many patients will have the background or energy to comment on the entire document.

So how can you contribute? There are several ways.

Task Force recommendations are about both the science of pain management and the lived experience of patients and doctors.

Patient discussion panels and dial-in speakers were invited and heard in both of the public meetings of the Task Force, as were short public comments by speakers in the sessions.

Text search tools were used to process the Federal Register comments and identify areas of concern among the hundreds of comments received before the two meetings.

These steps are a major improvement in approach. There is much in the resulting recommendations that is patient-centered. So be sure to acknowledge the good workthat many medical professionals turned in.

I think it’s very important to stress how much we appreciate the effort that went into this thorough search for information and not only hearing but truly listening to testimony from real pain patients.

This group did everything the CDC Guideline writers did not and have arrived at a vastly more reasonable report.

That said, be aware that the Task Force is likely to receive thousands of comments. If you want yours to count, then don’t copy and paste from somebody else’s remarks.

If you want to endorse the 38 pages and 65 comments I’ve already submitted, then you can email me at lawhern@hotmail.com and I’ll ship you a working copy to read first.

The Alliance for the Treatment of Intractable Pain is working on a condensed and issue-focused version that will fit within the three-page text limit of the Federal Register. So you can endorse that version rather than mine, if you wish.

When I try to imagine myself as one of the people who has to read all our comments, I think 3 pages is still far too long.

For effective commenting I believe concise and well-organized is best, so I only briefly qualify myself as a chronic pain patient with an incurable pain syndrome who has been on “chronic opioid therapy” since 1995.

I list all the recommended non-opioid medications, treatments, and therapies I tried and found ineffective before finally using opioids.

Then, I explain in what ways opioids have been beneficial, what they specifically allow me to do that I couldn’t otherwise (disability forms are keen on “functional” problems, not “feeling”) and that they allowed me to work for 13 more years.

You can see an example of such a comment I made on the CDC guidelines.

As you are gathering your thoughts, there are several areas where your lived experience is very important and the Task Force needs to hear from you — above and beyond their specific recommendations to Congress.

So, in this particular instance, I suggest you especially focus on bad experiences of the kind that Red lists below:

  • If your doctor has told you that he or she is afraid of losing their medical license or admission privileges because the DEA or State authorities may investigate them for over-prescribing, then tell the Task Force.
  • If a doctor has refused to continue treating you with opioids or demanded that you taper them down even though you’ve never failed a drug test or taken more than prescribed, then tell the Task Force.
  • If your doctor has told you that the CDC Guidelines are law and they’re not allowed to prescribe more than a fixed amount, then tell the Task Force. This isn’t true.
  • If you’ve had a bad reaction to Tylenol or Ibuprofen prescribed instead of opioid pain relievers, or they simply haven’t worked, then tell the Task Force.
  • If a pharmacy has delayed or denied renewal of your prescriptions, then tell the Task Force — especially if the reason was a false alarm from your State Prescription Drug Monitoring Program.
  • If you’ve ever been called a “drug seeker” or been refused treatment at an Emergency Department or other doctor’s office by a doctor or their staff, then tell the Task Force.
  • If you’ve tried non-drug therapies like cognitive behavior therapy, acupuncture, chiropractic, massage or physical therapy, then tell the Task Force whether or how well they worked (or didn’t).
  • If you are a Veteran or you know a Veteran who has been denied opioid pain therapy at a Veterans Hospital, then tell the Task Force.
  • If you personally know a family that has lost a member to suicide or who became bedridden because of untreated pain, then tell the Task Force.

There is one thing you probably shouldn’t tell the Task Force and it’s your entire life story.

This is critical because they will be getting thousands of comments (I hope) and amidst the volume of all they have to read they may be tempted to skip anything that doesn’t specifically address the report, so…

  • Do NOT tell the Task Force your full pain story
  • Do comment on experiences you’ve had with your pain and opioids in the medical system (doctors, pharmacists, nurses, etc)
  • Do comment on specific sections of the report

I know it’s tempting, because patients are so often not heard or credited with knowing what works for them. But remember that these doctors have already heard the stories of thousands of patients, and they really are trying to help.

Don’t drown them. There are only so many hours in the day.

Again, I urge you to be considerate of the comment readers – I think your words will carry more weight when the reader is grateful that your comment is brief and relevant.

Go in Peace and Power,
Red Lawhern

Because the report is truly massive, you can read my summaries to find which sections you want to comment on.

You might even find in my copious comments some fodder for your own.

3 thoughts on “Advice on Commenting to the HHS Task Force

  1. canarensis

    “When I try to imagine myself as one of the people who has to read all our comments, I think 3 pages is still far too long.”
    I think you’re right. I’m reminded of the recommendations when one is applying for a job; I’ve read that anything over 1 page on a resume is a guarantee of having it shoveled directly into the recycling, & that when the resume is actually short enough for the employer to look at, they only read the first sentence or two. Maddening for us with long, complicated histories & conditions, ain’t it. Just the list (no commentary or anything) of the non-opioid medications, procedures, & therapies I’ve tried in the last 40+ years runs to 4 pages, unless I format it into multiple columns.

    Liked by 1 person

    Reply
    1. Zyp Czyk Post author

      Yup – we complicated people are a problem for the modern culture.

      When the abbreviation, TL;DR (too long, didn’t read), becomes a “thing” we are headed for a “skimming” mentality, never going too deep to find the root of things. We are nudged this way and that, always faster, always pressured to do more and I feel myself falling further and further behind. I just can’t keep up with all the hurrying around me.

      I’m not sure I care though, because the deeper thoughts and ideas I find stimulating take time to properly digest. The important accomplishments of a life aren’t superficialities responding to every blip on social media. People don’t lie on their death beds wishing they had accumulated more followers or worked more, regrets are about wishing for more time to do what they really wanted to do and be the person they really wanted to be.

      Thinking about death again. Damn depression.

      Like

      Reply
  2. Pingback: HHS Report Feedback: Recommendations | EDS and Chronic Pain News & Info

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