Chronic Pain Patients Must Get Organized To Lobby For Their Rights. (Page 23)

People with chronic, intractable pain are being discriminated against and it is imperative that we join forces to fight for our civil rights to life, liberty and the pursuit of happiness. Please send information on existing associations and organizations that can help or how to establish one that can help pain patients fight for their rights with petitions, letters; emails to send to these state and federal politicians that are determined use prescription drugs, doctors and pharmacies to further their political careers. Drug abuse is not the same as opiate dependent because of chronic pain management and there are over 100 million people living with pain and many of us are unable to live without medication. If the deaths from abuse seems high, the suicides from pain patients that are unable to get relief will be significantly higher. If we do not fight these governors (Colorado's Hickenlooper is a perfect example) and federal agencies that are discriminating pain patients we will be even more victimized. Obviously these politicians no little about pain and they are not aware that chronic pain patients are voters. The statistics used to support their claims regarding deaths from prescription medications are seriously skewed and lacking in additional factors that contributed to the deaths. Compromising the doctor/pharmacy and patient relations is not the government's job; as John Boehner stated government needs to stay out of healthcare and let the trained healthcare professionals make decisions regarding their patients not some politician looking for recognition.

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Re: Mejane (# 440)

I thought i did post it . Just put your zip code in and it Does the letter for you.. Add to it ! Tell them how you're feeling .. here's the link

https:/­/­cqrcengage.com/­uspainfoundation/­app/­onestep-write-a-letter?0&engagementId=500034

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Posted on May 30, 2019 by Ed Coghlan

When the Food and Drug Administration (FDA) public advisory committee meeting of the Drug Safety and Risk Management Advisory Committee and the Anesthetic and Analgesic Drug Products Advisory Committee meets on June 11-12, it will be hearing from some chronic pain advocates.

Richard “Red” Lawhern Ph.D.—who heads the Alliance for the Treatment of Intractable Pain–has filed comments in advance of the meeting. The Committee is designed to provide advice and recommendations to FDA on regulatory issues. Dr. Lawhern warns the committee against doing anything else that can harm patients. Here’s his testimony:

I write and speak widely as a technically trained non-physician advocate for chronic pain communities, with over 60 published papers in both medical journals and mass media. Please place the attachment before all members of both Advisory Committees prior to their meeting.

Published data demonstrate a very wide range of minimum effective dose levels in individual pain patients, due to genetic polymorphism in liver enzymes which govern opioid metabolism. There is no one size fits all patient or therapy plan. Literally millions of US citizens benefit from high-dose opioid therapy with no evidence of addiction or mortality risk. To further restrict availability of high dose opioids in an already profoundly hostile regulatory environment would be both misdirected and abusive of patients.

As noted in greater detail in the attachment, published data from the CDC demonstrate no consistent relationship between overall rates of prescribing by doctors versus overdose-related mortality from all sources. The contribution of medically prescribed opioids to mortality is so small that it gets lost in the noise of illegal street drugs. To the limited extent that there are trend lines in mortality data, they suggest that since 2016, mortality is marginally lower in US States where rates of opioid prescribing are highest. Prior to 2016, trend lines were flat, with correlation coefficients less than 0.05...

[ Continued ... ]

Source: FDA Drug Safety Committee to Meet Next Month – What Would You Tell Them?

Look them up and let them KNOW how you feel! Tell your story !!!

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Re: C (# 442)

On the one post where it says what would you tell them... Click I and TELL YOUR STORY !
This is a time for us to be heard and for THEM to Listen !!

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Re: RIpainlobby (# 1)

I have been treated so badly by pain management doctors the ones who put me on the meds and use to be nice, now it is like you are scum. Please let them live in our shoes for awhile, heck they would get the drugs behind closed doors.

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Re: C (# 442)

Thank you C...Here’s the latest...

Source: "Pain Task Force Report Is Out – HHS Working to Give It Oxygen", nationalpainreport.com. Web. June 2nd, 2019

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Re: TG (# 4)

Hi TG I tried to sign it but it is closed but I have a government comment to tell them about pain patients and I really opened up to them. If you see it try to follow it and give them some hell.

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Re: Etech (# 446)

Etech ....STOP ! You just posted the 4th post on this subject it was a letter to THEN president Obama
Look at the date of the post ..

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Re: C (# 442)

C. The FDA comment was a pain in the A**. My comments would not go through on that one so there was the alternative one and got that one through. It's also similar to the one I'm trying to get people to post but it is not listed in this subject matter. If I find it I will copy and paste it on this subject matter.

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Re: C (# 442)

Here it is C, please try to follow it and let loose on the S*B's. This is for everybody on here. Try to get these done. We don't have much time and our voice must be heard. So please try to do it soon.

Etech Says:
Wed, Jun 12 '19, 4:01 PM

Re: Etech (# 154)

Ok guys and gals, I will try to direct you to this government page and you can let off some steam to them. Firs of all try to copy and paste this web address to your address box and it is a long one. If you can't do that I will try to give you the short version.The address is: fda.gov/advisory-committees/advisory-committee-calendar/june-11-12-2019-joint-meeting-drug-safety-and-risk-management-advisory-committee-and-anesthetic. Scroll down to where it says Electronic Submissions. In that first paragraph at the very end you will see a web address stating regulations.gov and click on that.

Then you will come into a page at the top says (Regulations.gov) on the left side of the page. Then toward the right side top of the page just across from the Reg.gov, you should see 3 tabs at the top saying SEARCH...BROWSE..LEARN. Click on SEARCH. Toward the top left to the right of the page you should see (Make a difference, Submit Your Comments and let your voice be heard... Just underneath that you should see a rectangular box... In the box at the top it says Search for Rules, Comments, Adjudications or Supporting documents... Just beneath that is a magnifying glass in an oblong circle box and type in COMMENT there. Then to the right of that click on Search. This should bring you to another page and at the VERY TOP there is another oblong circle with a magnifying glass to the right of it. Type in OPIATE in there and click on the magnifying glass. This will bring you to the page I did a real b**** on. Go about 4 topics down where it says (Fixed Unit of Use Blister Packing For Certain Immediate-Release Opioid Analgesics.For treatment of Acute pain) and so on. Click on the COMMENT NOW BOX to the right of the page next to the topic. This should bring you to the "B**** PAGE" is what I call it- OR COMMENT page... The topic is a little off but it is the only one open for comment and also the closest one i could find. All of the rest seem like they are closed for comment anyway. When you get to the COMMENT page let them hear all of your problems as you do with medchat. That's what I did. Hopefully someone will hear us. let me know if you have any problems and I will try to help. Also what I will do so you shouldn't have to enter that long web address, I'm just going to copy and paste the paragraph and hopefully that will be easier. Here is the paragraph along with the web address: I will put the web address in parenthesis for you: but just use only one of them, not all 3 that I parenthesized.

Electronic Submissions - Submit electronic comments in the following way:

Federal eRulemaking Portal: (regulations.gov). Follow the instructions for submitting comments. Comments submitted electronically, including attachments, to (regulations.gov) will be posted to the docket unchanged. Because your comment will be made public, you are solely responsible for ensuring that your comment does not include any confidential information that you or a third party may not wish to be posted, such as medical information, your or anyone else’s Social Security number, or confidential business information, such as a manufacturing process. Please note that if you include your name, contact information, or other information that identifies you in the body of your comments, that information will be posted on (regulations.gov).

On the comment page you can choose to remain anonymous or state your name as I did. They asked me the organization name and I put Many Pain Sufferers and Medchat. I could have put The US Pain Foundation but I wanted to speak for you all. Please try to do this so we can get our voice heard.

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Re: C (# 442)

Hi C, I wasn't able to get one of my stories through but boy I really socked it to them on the other link you provided. I'd like to give you a copy and paste of what I wrote if you don't mind. Hopefully everyone in here will catch on. Here it is.

Comment:
To Mr. and Ms GOV official, I am a 63 year old retired and disabled Electronics Technician that worked and put in Social Security since I was 15 yrs. old. I was diagnosed with Cervical Spondylosis since 1987 which is a condition where my neck has a degenerative disease and is very painful that I cannot arise from bed in the morning at times back then. Now it is hardly at all. I struggled to stay working through the pain carrying heavy test equipment almost every time I had to perform a job. This is a progressive disease and was not the only problem I was diagnosed with since then and had to take disability after over 30 yrs of working. Since the first diagnosis I've had Abdominal Hernia Surgery (not so bad you may say but had complications). Then in 2001 I had fallen on my tail bone and it did not heal properly so i went back to my orthopedic doctor and was then diagnosed with Lumbar Spondylytis. I've also had two breast surgeries to remove lumps and a torn meniscus surgery in my knee. Two years later, the same knee was collapsing on me as i then had to have Total Knee Replacement Surgery and will have the same fate shortly as my cartilages are diminishing in my other knee too. I have one story when I was on a very simple job in 2002 working for a wireless phone company and all I had to do was just only walk in the New Orleans Convention Center with only a phone in my hand. I walked a mile after I parked and as soon as I got to the doors my back gave out on me and it was either call 911 or did as I did an found an empty dark corridor where I could lie down to recover enough to get myself home and take a pain pill and a Soma muscle relaxer which helped tremendously. Now, no more Soma's can be prescribed that helped so much...NO THANK YOU! I finally could not take it anymore and filed for disability in 2007. Now without any pain medications, all I can do is lay in bed. Isn't that a great life?

I am expected to believe that prescription drugs are the cause of most overdoses but hear this. Most of the people that OD get their drugs from the streets. I actually knew 2 addicts that died and they abused Heroin, took Soma's, Xanax, prescription pain pills, Cocaine, Methamphetamine and did not take them discriminatively. They took them as much as they wanted when they wanted. So don't be laying a lot of propaganda on me about prescription drugs causing the problems. All you want to do is go after the easy thing instead of the real problem so your re-election can serve your needs to the majority of the people you can fool and look real good for them. Why aren't you going after El Chapo? Because you know when he is done, someone else will fill his shoes. As for me, I really do not care if I am addicted because I live in pain and it does not matter much to me because basically my life is over anyway. Lying in bed all day is no life for me so addiction is no problem when you are living in chronic pain. At least when I am able to take pain medications my life does improve a bit and I can at least do certain things they allow me to. If you could put yourself in my shoes, then you might smell the coffee. So have a good life and don't worry about me.

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Re: Mejane (# 433)

Very good point Mejane. If we would have started this earlier we could have nipped it at the bud....maybe.

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Re: C (# 447)

Very true C about the date. But I think it is still not too late. I really don't think any of the presidents for that matter other than Trump maybe have much ado about it but I actually read what Trump wants to do unless you know something about Obama that I don't. SORRY that you may be tired of my replies but please let me fill you in on what Trump said. " Big Pharma has got a pill for everything and it's time to end it" He also had more rhetoric about it in a newspaper article I read. If it seems that I am replying to you too often, its only because I think both of us are on the same page with our incentives to get our messages across. So after this, if it bothers you, I won't reply to your posts any more unless you would want me to.. But please keep the heat on.

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Hi all, I try to follow up on everyone's links and speak on them, sign petitions and so forth but from what I read in these posts, I do not see many people following up on these links so I will bow out and leave it up to you all. If the wheel does not get greased it will keep squeaking. So good luck all.

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Re: Etech (# 450)

Sounds all too familiar. But I notice you couldn't have read posts I've made. I have been taking this directly to the politicians. Regarding that, PA senator Bob Casey sent me the stupidest email response I've ever seen regarding the subject. His preferred method to address the problem is passing out giant checks to groups "fighting the opioid crisis" and then dislocating his shoulder patting himself on the back. He does NOT care about people living in chronic pain and he doesn't understand the "quality of life issue". I've been taking opioids a lot of years and I do not believe I am addicted since if I'm not having pain I don't take the pills and I don't have withdrawal. It took me a lot of years to convince my doctor years ago that dying from lack of sleep from excruciating pain or living a fairly normal life addicted to pain killers, I would prefer the addiction. I once went 7 days without sleep. When I finally did get some sleep I woke up in my care sitting in my driveway with nothing on except my underwear. Thank goodness there were no keys in the ignition or I would have been wondering about that. For a long time now I have been writing down the last time I took my vicodin and how many hours it was since the previous dose. I still have minor sleep problems but reading about people that OD I figured this would be a good way to prevent that from happening and I could also see how much control the vicodin has over me, how I take the pills. My Rx has to be rewritten as a new Rx and a minimum of 30 days has to elapse before I can get a new RX. Not a problem. My Rx allows me to take 6 pills in a 24 hour period. I can't remember when I've ever done that. I usually go 35 to 45 days on an Rx before I need to renew.

I don't allow myself to take any pills unless at least 8 hours have elapsed since taking the pills. I have a great doctor. Like she says, "nobody ever had problems with opioids following the instructions on the pill bottle". But live so many things when dealing with elected officials, they blame everything except the actual problems when dealing with issues, pass moronic laws with NO regard for the unintended consequences. Hell, I've thought for many decades politicians can't even spell "unintended consequences". One of the things I found out a long time ago is if you want to get politicians to respond to you they need to know who you are by your full name. To that end, decades ago I became a member of one of the county political committees. My congressman knows me on a first name basis and he knows I will raise hell with him in the newspapers in my area. The same holds true for my state rep and state senator. At one point in time I had people trying to get me on the ballot against the state senator. He knows me real well and he hates my guts and he belongs to the same political party. I've taken him to task many times in the media and generally made his life miserable. When I write him a letter (or any politician a letter), I also include the local newspapers and they print them as "Letters to the Editor". You'd be surprised the results you can get when you publicly accuse a politician of not caring for their constituents in all the newspapers in that person's district. More so when he/she has to face you periodically at committee meetings. There's a huge difference between letters to a politician from "John Doe" and a person that gets known politically and openly goes after the politicians for NOT performing their jobs.

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I am proud as a Connecticut citizen for your accomplishments towards Comprehensive Addiction and Recovery Act, signed into law on July 22, 2016, and mandates the establishment of an inter-agency task force to develop best practices for pain management and opioid prescribing. Addiction and Recovery Act, signed into law on July 22, 2016. CDC acknowledged physicians have the ability to and should use their clinical expertise and judgement to determine when and how to prescribe opioids to patients suffering from chronic pain as a result of any disease into law on July 22, 2016. So, patients having their doctors of many years treating cancer, chronic pain, Fibromyalgia, and many other debilitating illnesses such as arthritis, that are listed in this law. Victim and/or patient carry this publication get immediate treatment, if not, we should be able to enact Elder Abuse laws. Police will know what actions are immediately taken.

A few of these stories in the newspapers and doctors that have nothing to be guilty about will begin prescribing pain medications to their appropriate patients immediately, no excuses.

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Re: Laurag (# 455)

THANK YOU FOR THIS!!!

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Re: Etech (# 450)

Soma was the best prescription medication I ever had for insomnia and muscle spasms. I was only prescribed 30#, 10 mm, at bedtime. The pharmacies are the culprits to n this particular prescription... it was not covered by my insurance, but even then, never cost more than $30 cash payment. It's a tried and true medication. Been around since at least the 1950's, starting it's life as a sleeping aid, then sometime in the 70's I believe, changed to a muscle relaxer. I used it for both to let me sleep at night, thru acute lifetime Naomi's and muscle spasms from Sciatica, both sides. Now there is a new, expensive form of this drug being prescribed, called Belsomra. My doctor won't prescribe it for me, yet my 86-yr old Mom's doctor prescribed it to her. Go figure...

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Re: Laurag (# 455)

Thank you for that info-well done!

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Re: Etech (# 452)

Its too late... They extended the date until last year 2018 and had their meetings... The results are already in on the FDA.gov site. All you did was waste people's time. Sorry

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Re: Vintage Lady (# 457)

Hi Vintage, I think Belsomra is used as a sleeping pill? Or at least prescribed for that. I'm out of bounds for that drug. If that's what helps, I hope he would get it and should. Agent Orange was some bad s***.

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