As some of our members are aware, the US CDC has recently issued "voluntary guidelines" to physicians on the prescription of opioids to patients under long-term care for chronic non-cancer pain. However, in the real world, these are neither voluntary nor guidelines. The restrictive policy of the CDC actually comprises a mandatory standard of care which is actively harming patients and driving pain management doctors out of practice.
If a doctor prescribes larger doses of opioids than specified in the guideline, they may receive scrutiny from the US Drug Enforcement Administration (DEA). Some doctors have already been prosecuted or left practice to avoid being prosecuted. Others are forcing their patients to accept major reductions of opioid meds or to switch to other means of managing pain. I don't think it would be going too far to suggest that in a vain hope of reducing overdose deaths due to both prescribed and illegal narcotic drugs, the CDC is in effect condemning millions of patients to agony. In effect, they're conducting what amounts to an undeclared war on chronic pain patients.
I realize that the owners and management of Living With TN don't want to get involved in advocacy against US government policy. But as a private citizen who is no longer a moderator here, I believe I am at greater liberty to advocate on behalf of patients in our communities. Thus I accepted an invitation from Dr. Peter Breggin, MD, to speak as a guest on his radio show on the Progressive Radio Network, yesterday afternoon. The hour covered a lot of ground. If you are interested in listening in, the audio stream may be found at http://prn.fm/the-dr-peter-breggin-hour-04-27-16/
Regards, Red
Hi Red,
Thank you so much for this post. I accidentally clicked on "stop following new discussions" from you. I certainly did not mean to do this and I want to continue to follow your posts. I do not know how to add this now that you are no longer a moderator. Please explain how I can continue to follow you. I always find your posts so informative and insightful.
I clicked on the following:
To stop following new discussions from this member, go to:
http://www.livingwithtn.org/forum/topic/listForContributor?user=04o1dtrf4gc7l&unfollowNewContent=1&xg_source=msg_user_topic
I was so sorry to hear that you are no longer a moderator. I am hoping you are moving on to something where you can reach even more people or somehow have an even stronger influence on improving the health of patients. Is there somewhere else that I should also watch for anything you publish. I have started to listen to your discussion with Dr. Peter Breggin, MD and am looking forward to finish listening to it later tonight. Thank you so much for all that you do. Jackie
Not sure what to tell you on the following thing, Jackie. You might want to friend and then ask Scott Orn or Ben Munoz.
I do look in from time to time on discussions or patient questions, and anybody can look me up and send site email. At present I'm engaged with 10 Facebook groups that focus on chronic face pain, supporting something over 12,000 patients and family members. I'm also active as a commentator and soon to be a blogger on the National Pain Report, a newsletter from the US Pain Foundation. And I've submitted my qualifications to a group at NINDS which will convene a public meeting in early June to discuss issues related to the treatment of peripheral neuropathic pain. So I don't lack for things to do.
Regards and best,
Red
Having listened to the whole, without wanting to sound disrespectful, you sounded a lot more coherent than I expected.
Interesting conversation/argument.
Though given your argument you sound one step away from a naturopath, you argue against one pharma group in favour of the previous, where and to what detriment did opiods start out, they superseded something, and include prescription death.
Why argue against the new, money oriented no doubt (not you RED), when you advocate for the old without a peep, when the same criteria applied then? Pot and burnt kettle springs to mind.
Hi Red,
Have you heard of Tetrodotoxin? Apparently it is just as effective as morphine and it's not addictive.
However, the part I find interesting, is that tetrodotoxin blocks voltage-gated sodium channels. As we know, carbamazepine and oxcarbazepine are non-selective sodium channel blockers.
There is a lot of interesting research on sodium channel blockers (and a few drugs that are in various stages of trials), but I wanted to get your thoughts on this if you have any.
Currently tetrodotoxin is being trialled for cancer pain- LINK
I hadn't heard of Tetrodotoxin. In a brief search survey, I found a lot of references in the context of Puffer Fish poisoning and neurotoxin research. I've seen nothing on its comparative effectiveness relative to morphine in humans. There are quite a number of abstracts at PubMed which relate to Tetrodotoxin in animal studies.
There are as you suggest, several selective sodium channel blockers being investigated. One that I posted about many months ago was developed by Convergence Pharmaceuticals in the UK and trialed at Stage 1 with a cohort of about 60 or so trigeminal neuralgia patients, if I'm recalling correctly. Results were promising. Convergence was bought out by a US pharmaceutical firm, and they have since done basic trials to establish safety in drug interactions. But so far, no announcements of Stage 3 clinical trials, that I know of.
I'll investigate the link you provided. Thanks for the reference.
Regards, Red
knowpain said:
Hi Red,
Have you heard of Tetrodotoxin? Apparently it is just as effective as morphine and it's not addictive.
However, the part I find interesting, is that tetrodotoxin blocks voltage-gated sodium channels. As we know, carbamazepine and oxcarbazepine are non-selective sodium channel blockers.
There is a lot of interesting research on sodium channel blockers (and a few drugs that are in various stages of trials), but I wanted to get your thoughts on this if you have any.
Currently tetrodotoxin is being trialled for cancer pain- LINK
I have sent the following letter to the folks at WEX Pharma, associated with the Tetrodotoxin trials referenced above. My instinct is that there may be less than meets the eye in this particular research.
To Whom It May Concern:
Your website references clinical trials on TTX for cancer pain and chemotherapy related pain. On checking the NIH database, I found that the trials occurred in 2008. No results were documented there. Your site references only two published papers, also from 2007-2008. Have there been subsequent peer-reviewed publications of results? If so, I would appreciate online references to titles. Are treatments based on TTX in current development?
I write as a long time chronic pain patient advocate. Feel free to look me up on the Internet, to verify my bona fides.
Regards and well wishes,
R.A. "Red" Lawhern, Ph.D.
Personal Homepage -- "Giving Something Back"
http://www.lawhern.org
■■■■■■■■■■■■■■■■■■■
I imagine your instinct to be pretty spot on, as in why limit their remit to the above, should have told them something before they began their trials.
Puffer Fish excrement, that should do it, in addition to referencing side effects of opiods, not a marketing marvel, whilst claiming none for puffer fish venom. Think you might get a telegram from the Queen before a meaningful response to your enquiry. Should have played the ' do you know who I am card' somewhat stronger.
P.S. You might want to update your giving back page, 2014, gives the impression you got bored in 2014.
Let us Know if you get a response.
Looks like their drug is in phase 3 for cancer pain right now. So there have to have been some positive outcomes so far in testing up to this point -
Our first indication, TTX for cancer-related pain, is in Phase III clinical development in Canada. This study is a multicentre, randomized, double-blind and placebo-controlled trial comparing the efficacy and safety of TTX to placebo with moderate to severe inadequately controlled cancer-related pain. The primary endpoint is a composite of pain outcome and quality of life measurements using validated pain assessment tools. The secondary endpoints include the onset and duration of pain relief.
For chemotherapy-induced neuropathic pain its in Phase 2-
WEX also plans to file a protocol with the U.S. Food and Drug Administration (FDA) for our second indication, TTX for chemotherapy-induced neuropathic pain. This is a randomized, double-blind, dose-finding, placebo-controlled, multicenter study of the potential efficacy and safety of TTX in patients with CINP. This Phase II study will take place at approximately 20 sites in the United States (US), a total of 275 patients will be enrolled. Currently this clinical trial is ongoing in the United States.
http://www.wexpharma.com/products.asp?m=3
Richard A. "Red" Lawhern said:
I have sent the following letter to the folks at WEX Pharma, associated with the Tetrodotoxin trials referenced above. My instinct is that there may be less than meets the eye in this particular research.
To Whom It May Concern:Your website references clinical trials on TTX for cancer pain and chemotherapy related pain. On checking the NIH database, I found that the trials occurred in 2008. No results were documented there. Your site references only two published papers, also from 2007-2008. Have there been subsequent peer-reviewed publications of results? If so, I would appreciate online references to titles. Are treatments based on TTX in current development?
I write as a long time chronic pain patient advocate. Feel free to look me up on the Internet, to verify my bona fides.
Regards and well wishes,
R.A. "Red" Lawhern, Ph.D.
Personal Homepage -- "Giving Something Back"
http://www.lawhern.org
lawhern@hotmail.com
I got a response from the VP and General Manager at WEX, as follows:
=================
Thank you for the note and your interest in our product HalneuronTM (TTX) that is undergoing clinical development.
WEX is working diligently to complete the necessary clinical trials that will satisfy the regulatory authorities that HalneuronTM is safe and efficacious for specific pain condition.
I do not have detailed information I can provide to you at this time but do encourage you to monitor our website from time to time as we plan to provide updates in the near future.
At WEX we recognize that pain is an area that requires greater attention and are striving to make available a new non-opioid analgesic for those patients in need.
=======================
My impressions: the company is playing TTX very close to the chest. Whether there is anything substantial behind their clams, really can't be determined at present. When I searched the NIH trials database, I got six hits on the term TTX. One is recruiting for a trial in surgery for operable breast cancer using 0.5% lignocaine 60mM. The other five trials have been terminated, with the most recent logged update in 2015 and marked as a "Phase 3" study. If WEX is still conducting active trials on TTX, they either haven't bothered to register their protocols with NIH, or they're doing the work outside the US or both. WEX is registered in Vancouver Canada.
It is interesting to see this info here. Talks about opoids and chronic pain hpatients. I like to know the true #'s in comparison of who take it for a reason and with RX. and those who have died from overdose. Do they really have a chronic pain issue. its all over the media, and the one I am aware of in Mass are drug seeking cocaine, heroin and other stuff I do not know of. But if you take those who have died, would be those street drugs rather than the RX drugs
Also I am deaf/hard of hearing have a Cochlear implant. love to see if there is a written segment of this radio show?
Kromeo, I don't believe Dr. Breggin's site transcribes the audio segments into text. Sorry.
There are also several very active discussion threads on the National Pain Report, addressing the questions surrounding prescription drugs versus street drugs in opioid-related deaths. My personal impression is that the CDC lacks definitive data on the allocation of cause of death between prescription and illegal drugs. I've also never seen validated data on the REASONS for long term prescriptions of opioid drugs. Believe it or not, nobody seems to have reported the numbers of patients who lapse into addiction or drug dependency from prescription opioids. Most of what the CDC used in the way of medical evidence for their new guidelines was Type 4 which comprises case reports and low-quality small-sample outcomes studies with significant limitations.
kromeo419 said:
Also I am deaf/hard of hearing have a Cochlear implant. love to see if there is a written segment of this radio show?
I’m a patient that takes narcotics and recently started taking Subsys. It’s a fast acting fentanyl spray that taken sublingual. It has helped a lot. That said, I am obviously part of the population that is drug screened every month. I’ve never had a problem but I do think this is a little over board. I have been in the medical business for 25 years as a clinical person. I am frustrated with the way the government tries to govern my healthcare. Especially when I pay handsomely for the care I get. I would approve and sign any documents supporting your cause. I am also available for interviews if are invited back and they want to heat from others.
Bill, I think at this stage the best help anybody could provide would be to a law firm that has won class action lawsuits against the government in the past. More immediately, I also want to look into the rules and administrative requirements for establishing a non-profit organization or branch of such an organization that can raise funds to support the legal expense that may be involved.
Any help you can provide or refer me to in those two areas would be gratefully received.
Regards