Though not particularly long, this comment took me several days to compose and edit (and edit again). I have only one chance to influence all these various agencies trying to restrict our opioid use, so I want to make my comment compelling enough to make someone think twice.
I intend to point out various issues the reader may have overlooked, the unfairness of the restrictions, the personal harm I will suffer, and end it with a strong question or statement that might resonate with the reader.
==== COMMENT ====
I’m writing to urge you to not let the government set standard medication dosages for individual patients, which will happen if this agency adopts policies based on the scientifically flawed CDC Opioid Prescribing Guidelines.
I inherited a permanently painful and disabling disorder, Ehlers-Danlos Syndrome, and have been taking high doses of opioids for the last 20 years. I was able to maintain employment for 10 of those years before the pain became too great.
Countless other treatments, therapies, and medications, were ineffective or far too expensive. For me and many others, only opioids provide effective pain relief, so enforcing arbitrary opioid limits is cruel and unusual punishment for pain patients.
Thanks to opioids I’m still functional enough to write you this letter, even though it took me several days to complete. Below are 5 egregious flaws I see in the CDC Guidelines, which stipulate arbitrary (not backed by research) dose limits for individuals.
- The Guideline opioid restrictions are unfair to people with permanent pain.
A standard limit for pain relieving medication unfairly targets patients who have painful diseases or genetic flaws, people who suffered terrible accidents, or those who were gravely wounded in the military.
All these people will be condemned to a life of constant pain through no fault of their own.
- The Guideline has too many flaws and inconsistencies: it is biased, based on admittedly manipulated data, and overlooks essential facts about opioid prescribing.
The CDC guideline was created by a group of addiction specialists. No pain management needs were considered by this group.
The CDC admits some overdoses were counted multiple times if multiple drugs were found at death.
The evidence used for the guideline was cherry-picked in an unusual pattern which excluded evidence in favor of opioids for pain relief.
The CDC made strong recommendations based on weak evidence.
- Standard dosages imposed by the government are inappropriate for medical practice.
This same government is committed to “Individualized Medicine” with the Precision Medicine Initiative, which recognizes that the most effective treatments must be tailored to the genetics of each individual.
- The “opioid overdose” numbers were created by adding together very different drugs, users, and motivations.
There is little overlap between legitimate prescriptions used for pain relief and illegal heroin used for recreation, so this confuses the motives of people in pain with those looking for a recreational high or staving off withdrawal.
Limits intended for one problematic population (people with less severe pain, people with acute pain, recreational users) will strongly impact a different and innocent population.
- The “crisis” is one of addiction and not any particular drug, and is more related to psychological, social, and economic factors than prescriptions.
Most tragic consequences come from heroin mixed with fentanyl, definitely NOT a Rx opioid.
When OxyContin was made abuse-resistant, the recreational users switched to heroin because it’s cheaper, but pain patients need legal, measured, and quality assured medication so they cannot switch.
Results so far?
Prescriptions have been declining since 2012 but heroin overdoses continue to increase, so the argument that these prescription restrictions will reduce opioid/heroin/fentanyl overdoses is FALSE.
It’s not my fault that I need opioids because I inherited a painful condition.
It’s not my fault that some people lie and steal to get opioids.
It’s not my fault that people are using illegal opioids like heroin/fentanyl recreationally or addictively and overdosing.
Why do I have to suffer
for the destructive behavior of others?
==== END COMMENT ====
I hope you find this a useful aid to composing your own comments, but if you can think of ways to improve it, please let me know.
Please, please, please send comments to protest these wrongheaded restrictions, like the one mentioned in the previous post:
Like the CDC, FDA, DEA and CMS (Medicare), the National Committee for Quality Assurance (NCQA) is targeting high doses of opioid pain medication
To post a comment click here
(a detailed registration is required).
Comments will be accepted until March 22.
For the right selections to pick on the comment page, see previous post: Another Committee Setting New Rules for Opioids
The comment to the NCQA can only be 2500 characters, so I had to “slim down” my comment to fit for this organization.
Below is a version with only 352 words / 2276 characters (original is 571/3689) and no HTML formatting. You can cut and paste from either version if you want (just remember to change the personal part which I italicized):
==== SHORTER COMMENT ====
Please do not let the government set standard opioid medication dose limits for individuals, as specified in the scientifically flawed CDC Opioid Guidelines.
I inherited a permanently painful disabling disorder, Ehlers-Danlos Syndrome, and have been taking high doses of opioids for the last 20 years. I was able to maintain employment for 10 of those years before the pain became too great.
Countless other treatments, therapies, and medications, were ineffective or far too expensive.
For me and many others, only opioids provide effective pain relief.
Below are 5 egregious flaws I see in the CDC Guidelines, which stipulate arbitrary (not backed by research) dose limits for individuals.
* The Guideline opioid restrictions are unfair to people with permanent pain.
All these people will be condemned to a life of constant pain through no fault of their own.
* The Guideline has too many flaws and inconsistencies.
It was created by a group of addiction specialists, not pain mgmt specialists.
The CDC admits overdoses were counted multiple times if multiple drugs were found.
The evidence used was cherry-picked in a way to exclude favorable studies on opioids.
The CDC made strong recommendations based on weak evidence.
* Standard dosages imposed by the government are inappropriate for medical practice.
This same government is committed to the Precision Medicine Initiative, which recognizes that effective treatments must be tailored to the genetics of each individual.
* The “opioid overdose” numbers were created by adding together very different drugs, users, and motivations.
Limits intended for one problematic population will strongly impact a different and innocent population.
* The “crisis” is one of addiction and not any particular drug, and is more related to psychological, social, and economic factors than prescriptions.
Most overdoses come from heroin mixed with fentanyl, definitely NOT a Rx opioid.
Results so far?
Prescriptions have been declining since 2012 but heroin overdoses continue to increase.
It’s not my fault that I need opioids because I inherited a painful condition.
It’s not my fault that people are using illegal opioids like heroin/fentanyl recreationally or addictively and overdosing.
Why do I have to suffer for the crimes committed by others?
EDS and Chronic Pain News & Info 
Fantastic! Under #4, “withdrawals” consider using singular “withdrawal” (sorry, I’m a copy editor 🤓)
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I seem to recall “withdrawals” expressed as a plural almost everywhere but, now that I think about it, I can see you’re right: “withdrawal” is the whole syndrome, like diabetes or EDS.
So I took your advice – thanks! I appreciate any help I can get with my writing because it’s such a solo activity that it’s easy to lose perspective.
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EXCELLENT! So well-written. Pain patients are not addicts. On the McGill Pain Scale, CRPS/RSD ranks 42 out of 50, making it one of the most severe pain conditions of all; more painful than cancer, amputation. I’ve been suffering with CRPS (resulting from surgical trauma) for more than half a decade, and opioids are the only treatment that helps my permanent and non-healing nerve injury. Having tried and paid out of pocket for acupuncture, massage, hypnosis, biofeedback, a month long pain camp, mindfulness, talk therapy, PT, OT and more, I can honestly say that holistic and alternative treatments did nothing to improve my pain or how I tolerate life with this 24/7 monster called chronic pain. Expensive and alternative therapies actually caused me more physical and emotional pain, further impairing my physical and emotional functioning. Patients under the care of licensed and medially trained practitioners who diligently and responsibly prescribe opioid medications for chronic pain have a right to choose this treatment option without restrictions for their patients. And patients have a right to choose opioids to treat their chronic pain — plain and simple.
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Your letter is fantastic. It is outlined well & should be easy for others to personalise. One additional important fact that should be emphasized as well, is the continuous rise in suicide rates since the implementation of the CDC’S Guidelines which has greatly impacted patients ability to withstand their over-whelming pain levels on an daily ongoing basis without sufficient pain relief.
The only other suggestion perhaps, which should be mentioned is that, upon creating an account/signing in to the website to post your comment, there’s several options to choose from in regards to what your comment is pertaining to; it may be helpful stating which option should be selected, as many may not know for sure which to select. We wouldn’t want to see letters & comments discounted because the wrong option was chosen in error.
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Thank you for your wonderful praise!
I had posted the right selections for comments in the previous article: Another Committee Setting New Rules for Opioids I’ll post a backlink – thanks for pointing this out.
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