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-   -   PROP petition (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/177883-prop-petition.html)

painman2009 10-11-2012 04:06 PM

PROP petition
 
hey all . I just read the PROP petition to the FDA
oye they would have us not taking opioids or take them for 90 days and thats it. the only way to get more is to have a cancer dx..
I agree opioid abuse needs to be monitored, but why should people who truly benefit from these treatments be put into tortuous pain. even prisoners are give humane treatment. SOOOOOOO not right.

alt1268 10-11-2012 05:26 PM

I have not read it. So thanks for the gist of the information. We should look into who to contact if we are against it.

Neurochic 10-11-2012 08:35 PM

If you look at the RSDSA website, there is information about the restrictions the legislation will create.

They are currently emailing all of their members and contacts to alert them to this critical issue and they are asking people to respond with their objections to the bill. All of the details are on their website and they also have a template with the text and information people need to use in their emails or letters.

fmichael 10-13-2012 01:00 AM

this one's important folks
 
I completely agree with painman. It's as though the opioid hawks feel the wind is finally at their back, and out of nowhere have swept in for the kill.

For those who don't get around to following Neurochic's suggestion to go onto the RSDSA site - or who might not spot the appropriate links, here’s the link to the RSDSA Action Alert that went out Thursday.

And here are links to the Gawd-awful PROP petition to the FDA and the response of the RSDSA. The last paragraph of which tells the tale: by changing the approved labeling, any use of prescription opioids BEYOND 90 DAYS will become “off-label” and therefore not covered by Medicare and most health insurance plans!

Having said this, it occurred to me that a key element in setting up the current situation has been the discrediting on the "pain community” as shills for pharmaceutical and medical device manufacturers. See, e.g., American Pain Foundation Shuts Down as Senators Launch Investigation of Prescription Narcotics, Charles Ornstein and Tracy Weber, ProPublica, May 8, 2012; as well as the authors’ earlier, The Champion of Painkillers, December 23, 2011.

So, to the rescue comes the Department of Psychiatry of the University of Washington, et al, the folks who have all-but-outlawed - by statute - the use of opioids for any and all non-metastatic chronic pain in the State of Washington, and the nation's leading proponents for an unproven therapy for CRPS that happens to employ mental health professionals by the bucket and around the clock: Cognitive Behavioral Therapy (CBT). [Link is to Wikipedia article] http://en.wikipedia.org/wiki/Cogniti...vioral_Therapy In fact, the Society of Clinical Psychology, American Psychological Association, Division 12, now specifically lists “Chronic or Persistent Pain” among an enumerated list of “Psychological Disorders and Behavioral Problems,” and includes in there the following:
Chronic Pain Conditions
• Fibromyalgia
• Chronic Low Back Pain
• Rheumatologic Pain
• Headache
Chronic or Persistent Pain in General (including the conditions listed above)

Note well what they are saying: if a patient has non-metastatic chronic pain, that is a per se psychological/psychiatric disorder!


(Quite the contrast, I believe, to the currently recognized Dx in the DSM-IV “Mood Disorder Due to a General Medical Condition,” 293.83: we’ll have to see what survives in the upcoming DSM-V.)

And here, by way of what may be a very rude awakening, I ask everyone to check out Jennelle’s post from 08.15.09 in her update on the pain program thread, as well the subsequent comments to that thread. Hopefully, her experience does not become a prologue to our common future.

In any event, this is just a rough sketch of the what appears to be the current lay of the land. Hopefully, it won't come to fruition. But if we are to preserve our right to use modest amounts of opioids in response to one of the most painful conditions known to medicine, PLEASE write the FDA in opposition to the PROP petition, and encourage your treating pain management specialists to do the same. Thanks.

Mike

fmichael 10-13-2012 11:50 AM

And by way of post-script, if anyone wants to know my fundamental beef with CBT or “Acceptance and Commitment Therapy for Chronic Pain,” to use to term now in vogue,* the basic problem is that these guys promise, in the course of three weeks (or less) of insurance-paid extensive treatment, the possibility of a level of equanimity what I have only recently achieved with ten years of intensive meditative practice, beginning with an eight-week Mindfulness Based Stress Reduction (MBSR) class in 2002.

And by way of an aside, I heartily recommend MBSR. If you go on their website at the University of Mass. Medical School (to which I just linked) there's a link to a directory that lists hundreds of trained teachers in active practice around the country, many of whom are licensed mental health professionals, which is great because it allows medical insurance to pick of some or all of the tab. In fact, as things stand for me right now, by far and away, the hardest part of the CRPS experience is the cognitive toll that's been exacted along the way. Something that I am now successfully addressing - at least in part with tDCS - but that is the subject of another thread altogether. :tongue:

But back on point, how is it that these guys manage to compress years of otherwise deep training into a few weeks? It’s simple really. They just teach patients to be aversive to “self-pity”:
Cognitive restructuring is used to help patients identify and challenge overly negative pain-related thoughts and to replace these thoughts with more adaptive, coping thoughts.
Keefe, F. J. (1996), Cognitive behavioral therapy for managing pain, The Clinical Psychologist, 49(3), 4-5. Ever see The Manchurian Candidate? The reason I believe these programs will not succed as long-term treatments is that acceptance and equanimity must be based first on self-love, something that is quite impossible in a brainwashing scenario based on instilling an aversive response to “negative pain-related thoughts.”

Or put it another way, true acceptance begins at home, with one's self, and must be based first and foremost on loving the self. And not "just loving the self with all it's faults," but the faults themselves. We must, in effect, "love those thoughts to death" with all the compassion in our hearts. But does that sound like "help[ing] patients identify and challenge overly negative pain-related thoughts and to replace these thoughts with more adaptive, coping thoughts." Not on your life.

Starting off with forming an aversive response to "self-pity" will not and cannot lead to developing a truly equanimous relationship with yourself, the corner-stone of developing equanimity with everything else. Just ain't gunna happen.

* I assume because it's well recognized that "mistakes were made" early on and some re-branding was in order. Still "a rose by any other name . . ."

Jimking 10-15-2012 08:44 AM

Michael, wouldn't this law, if enacted, counter existing law already on the books? Isn't there a law about pain and the humane treatment of those in extreme pain?

fmichael 10-15-2012 11:24 PM

Quote:

Originally Posted by Jimking (Post 922739)
Michael, wouldn't this law, if enacted, counter existing law already on the books? Isn't there a law about pain and the humane treatment of those in extreme pain?

Jim -

Interesting point. Except as to "parity" in mental health care, I was not aware of such a statute, but having checked it out, you may well be thinking about this provision in the Patient Protection and Affordable Care Act (“Obamacare,” or the “ACA.”):
SEC. 2706. NON-DISCRIMINATION IN HEALTH CARE.

(a) PROVIDERS.—A group health plan and a health insurance issuer offering group or individual health insurance coverage shall not discriminate with respect to participation under the plan or coverage against any health care provider who is acting within the scope of that provider’s license or certification under applicable State law. This section shall not require that a group health plan or health insurance issuer contract with any health care provider willing to abide by the terms and conditions for participation established by the plan or issuer. Nothing in this section shall be construed as preventing a group health plan, a health insurance issuer, or the Secretary from establishing varying reimbursement rates based on quality or performance measures.
Section 2706 (now codified as 42 U.S.C. Sec. 300gg-5) goes into effect in 2014 and covers virtually all individual and group insurance market policies, although it is not clear whether it will apply to existing policies “grandfathered” in 2010 by the ACA.
So, that's a good catch on your part, assuming (1) the Patient Protection and Affordable Care Act actually goes into effect in 2014, and (2) any pernicious FDA labeling changes don't take effect in the interim.

Or, in the immortal word of Dirty Hairy, "Are you feeling lucky?"

Mike

alt1268 10-16-2012 03:33 PM

ok. sent in my comment. Thanks for all the information.

ginnie 10-16-2012 03:56 PM

Hello painman
 
I got wind of this about a month ago. I was horrified that this was even proposed. I was able to cut back on opiads, but to know they are available to me is a comfort. I can't imagin, taking away peoples pain medications. No government should condemn a person to a torturous existance with no pain medication. I think there will be a terrible rebellion if this should be enacted. Cancer pain is definately not the only kind of pain there is. Those that suffer should not be threatened with such a thing. I am outraged at this. I would take to protesting myself, and writing whatever letters I could to stop this from happening. I vote we all write letters to stop this from ever coming to some government agency. This is flat out wrong to do to folks. ginnie


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