Is Chronic Pain Undertreated and Underrepresented? An Advocate Says Yes.

Is Chronic Pain Undertreated and Underrepresented? An Advocate Says Yes.

The FDA wants to hear from you—but don’t be distracted by the title. A noted chronic pain advocate believes this is an opportunity for chronic pain advocates to comment.

The official announcement is that the FDA wants input and comments from stakeholders, including racial and ethnic minority, underrepresented, and underserved populations in establishing strategic priorities for the Office of Minority Health and Health Equity.

That’s where Richard “Red” Lawhern, Ph.D., saw an opportunity.

Here’s what he wrote:

“I assert that “underrepresented” populations must be understood to include millions of patients who have been disabled by chronic pain, and who have been grossly under-served by the medical establishment and HHS. These patients have also been ill served by the fatally flawed and ethically unsound US CDC 2016 guidelines on prescription of opioid analgesics to adults with chronic non-cancer pain.”

Lawhern, a noted advocate for chronic pain who has built a considerable following among activists, said that the government “must sponsor trials and a systematic trials review to assess the very wide range of genetically mediated natural metabolic rates for opioid analgesic medications in patients with pain.’

He went further.

“It is past time to return prescribing decisions to qualified doctors in collaboration with their patients,” he wrote. “There is no present evidence-based consensus on what comprises “usual prescribing practice” in pain management employing prescription opioids.”

Lawhern believes there is an historical bias against co-prescription of opioid analgesics and Benzodiazepine medications essential for management of sleep disturbance, depression and anxiety in pain patients.

“This bias is founded almost entirely on association of benzo drugs with opioids in postmortem blood toxicity screens. There is no published trials data to evaluate interactions of these drug classes in patients who are monitored while alive. However, we know that under-treated depression is strongly associated with bad outcomes in pain management, including suicide. Research on drug interactions between these two classes in live patients needs to become a priority for FDA.”

If you want to comment, do so here.

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Authored by: Ed Coghlan

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Patricia R Jones

If I dont have my pain medication I am bed ridden .

Lynne Hall

STAY IN YOUR LANE!
I wanted to tell my last Pain Management Doctor.
One doctor, a PA and 7 women. Office packed. Averaging $20 -$30,000 a day.
This is the life we live now.
1.
NO DOCTOR PATIENT RELATIONSHIP.
2.
PEE IN A CUP EVERYTIME YOU COME EVEN IF IT WAS LAST WEEK..WE LOVE MONEY.
YOUR URINE WILL BE TRANSPORTED SOMETIME IN 24 HOURS, HOPEFULLY. THEY WILL BE SCREENED FOR THINGS WE HAVEN’T THOUGHT OF YET.
EVEN IF YOU ARE SEEING A URIOLOLIGIST. CAUSE WE JUST GONNA SQUEEZED OUT OF YOU AND MEDICARE.DUPLICATE TEST MUST BE PAID AND URINE AND DORTOR VISIT MUST BE PAID OR WE WILL REFUSED REFILLS.
3.
What good has the FBI, CIA, HOMELAND, NATION SECURITY, don’t by working against each other, INSTEAD OF FOR THE PEOPLE.
CDC, NIH, HHS, WHO, AMA, DAB, What good did they do us!
SHAME ON ALL OF YOU FOR MAKING THE ELDERLY ,SILENT AND IN PAIN. HOW DARE YOU TREAT LAW ABIDING CITIZENS LIKE DRUG ADDICTS, OVERNIGHT.
YOU WERE VERY SNEAKY ABOUT IT. OUR VETS FIRST.
OUR MANY I WATCHED SUFFER SO HORRIABLE, IN OUR CHURCH, THAT DREATH WAS A BLESSING. MANY I KNOW WOULD BE HERE TODAY IF NOT FOR THOSE FIRST 2014 CDC REPORTS.
100’S OF THOUSANDS WILL MAYBE SLEEP A FEW TOTURED NIGHT. JUST PRAYING TO BE DONE.

MAY NOW THE WORLD GET THE ISOLATON WE SUFFER EVERYDAY. BUT THEY ARE TO CONCERNED ABOUT THEIR HAIR.
4.
AS A PATIENT WHO HAS BASICALLY LAYED WITH MY HEAD IN THIS GUYS LAP DURING MULTIPLE SURGERIES, WHILE THE REAL DOCTOR IS STANDING AT MY SIDE, ENCOURAGING AS THIS GUY WHO TELLS ME TO COUNT BACKWARDS, IS NOW THE ONLY DOCTOR WHO CAN PRESCRIBE PAIN MED TO ME.
LIKE WTF!
THIS GUY PUTS PEOPLE TO SLEEP HAS MORE POWER THAN THE SURGEON WHO SPENT OVER 8 HOURS OF SURGERY ON ME DOSE AS TO MY PAIN MEDS.
I’M JUST TRYING TO FIND THE REAL DOCTOR.
5.
RICHARD LAWHERN. YOU ARE A HERO TO SO MANY OF US. WE LOVE YOU AND DRAW STRENGTH FROM YOU. THANK YOU.

BUT THIS COULD BE A DREAM AND WE AREN’T RULEF BY HILTER 2020.
AFTER ALL I JUST SAW THE SILLIEST COMMERCIAL. A GUY WEARING A MASK TO ORDER HAMBURGERS! lo

Unfortunately the comment period expired back in February. Not sure why this is being published & people encouraged to write over 2 months later. If anyone leaves a comment it will NOT be considered as the comment period is long closed.

Stacie Wagner

Please go to the site and write your summary. We are as a community needing these officials to understand how our lives have been destroyed by the 2016 prescribing guidelines. How many of us had been stable on high doses of opioids, many for years or decades. However, I know how fragile my hold on each day is and how difficult it is to continue living in the unnecessary conditions of always being under-medicated. I am certain I am not the only one. Please fill out these documents.
https://www.federalregister.gov/documents/2020/04/17/2020-08127/management-of-acute-and-chronic-pain-request-for-comment.

LJCoach

2 of 2

“Opiods are not for everyone and every pain. But it should be up to the treating physician to decide if there are red flags for abuse before discussing opiod treatment with the patient, and then a mutual decision on both their parts on how to progress.”

There is no excuse to moan on this site if you don’t make the attempt to post a comment at this link. If you don’t care enough to try and change things, why should anyone else care?

Management of Acute and Chronic Pain: Request for Comment’ comments accepted thru June 16, 2020. Link is:

https://www.federalregister.gov/documents/2020/04/17/2020-08127/management-of-acute-and-chronic-pain-request-for-comment

LJCoach

For everyone who doesn’t know how to use Google:
‘Management of Acute and Chronic Pain: Request for Comment’ comments accepted thru June 16, 2020. Link is:
https://www.federalregister.gov/documents/2020/04/17/2020-08127/management-of-acute-and-chronic-pain-request-for-comment

My comment:

“Have had RSD/CRPS beginning in left leg in 1986, and progressing to all limbs by 1989. I have been on opiods for 27 of 34 years, having tried non-opiod pain relievers and off-label medications for the first 6 years, and taken a one year break between oxycontin/percocet and now Nucynta in 2009-2010, when I unsuccessfully tried Suboxone for pain relief, along with some old and new off-label medicines.
Nothing has given me a degree of function and pain relief as have the opiods. I pay for everything I do, but I’ve progressed from a wheelchair to canes, doing therapy twice weekly to maintain some degree of independence. The pain is no lower than a ‘5’ at best, but that’s far better than any other medication or non-medication therapy I’ve tried. It’s a new normal I’ve learned to accept, with the still present daily flare-ups, especially after exertion.
Despite the hysteria and misinformation of the ‘opiod epidemic’, the vast majority of addicts and overdoses are from intentional misuse, polypharmacy and illicit drug use. The British Medical Journal, in Jan 2018, has a study that followed 568,000 surgical patients between 2006-2013 who were given opiods post-op. Far from the ‘heroin pills’ of Andrew Kolodny and PROP, the rate of misuse was PT6%, and that was misuse, not necessarily addiction. That PT6% includes, for instance, someone who had 6 pills left over, and decided to stash them for some potential future pain experience. The Annals of Internal Medicine had a similar study in Fall 2019, and a study of Massachusetts prescription drug abuse in the autopsies of ODs last Fall again showed a rate of 1%.
1 of 2

Dana

I broke my sine down working and cotributing to society. As a Welder I have worked as a Ironworker/steamfitter/millwright to name a few. A steel trades journeyman. I have absorbed radiation working at Cooper Nuclear where we strngthened the structure around the reactor. Ialso installed the”Safety Check Valve system to protect a vast number of the population.Now, I am treated like a drug addict and forced into a life of intractable Chronic Pain! I am not happy. What really got me is when I was called a “drug seeker”by a Dr. I was seeing ..and”liked.” But almost got up and broke his jaw when he called me that.This stuff must end. Millions are suffering needlessly that have contributed to our society as I have. I have built Hospitals and schools,,repaired our power plants and had “Top Nuclear Security Clearance”,,”To Be Treated Like This!?” This is a form of “Torture” which IS A Violation Of Our Human Rights. I have reported this to the United Nations and will file lawsuits against health organizations like CHI Health soon if a Dr. will not have me sign a pain contract and get me “back on” what my good Dr. had me on until the DEA went after him. This is one Ungodly nightmare for millions of us now and I hope the politico’s realize we “Vote.”

Deborah M Babcock

.I have chronic migraines since I was late teen worst pain ever ! I have buldging disks in back that have terrible flare ups second worse pain I have although they come pretty close..I have bursitis in my hips I have restless leg syndrome which been taking gabapentin for years doesn’t help much just use to taking it not sure how safe long term use is on my system..I have high anxiety I am diabetic with nerve pain in legs arms and hands and feet high blood pressure probably due to pain issues mostly i have had insomnia for many years probably partly for not being able to sleep due to pain issues. I can’t get pain medication to help with any of it..my muscles are tense all the time..I live my life around my pain and have to endure it 24/7 no relief at all..doctors push antisphycotic medication constantly. I’m not crazy I’m in pain…I should have a say what does or does not go into my body..I’m not an addict nor have I ever been and way back when I had a good caring doctor I had pain medicine for my migraines I tried every migraine med known to man and the only thing that helps with the pain is pain medication..I’m tired of the lies regarding this whole opioid crisis !

LJCoach

From the number of responses I’m probably writing to myself. If this was some Kolodny/PROP article there would be fifty boo-hoo comments about medical mistreatment and stigma. Now that there’s an article pointing to a way to try and change that situation those same people don’t have the strength in their fingers to reply. Disgusting!

Margaret Drumheiser

Why does the FDA have that their is only 26comments on the register about this issue when I know their was alot more comments then that. I’m nor understanding if this is another . Or they only took so many of the 400 and some comments that were their because I know I commented atleast twice already as did others so I’m not sure if they change the numbers of I’d this is another thing were commenting on ?? I’m confused as to why it says theirs only 26 comments in the registry ??

Jeanette French

Thanks and totally agree, tapering has come to mean tapering of all medications even when the patient has been medically stable for decades. Medication and chronic pain treatment needs to come back to the pain specialist and not the politicians,whom have no scientific evidence to back up their tapering methods, or interference into chronic pain patients treatment. The opioid crisis has never been about prescription medications, it has always been based on illegal drug use, however the only people being hurt by the drug war are responsible pain patients, and not illegal drug users. Those who choose to use drugs un-responsibly are hurting the responsible patients using them correctly and safely. Illegal drug users need treatment , if they want it, and they need clean drugs to keep them alive, as as long as they are alive, there is still hope for them. Follow Portugal’s policies. You can not force anyone to stop using drugs if they don’t want to. Just like gambling, sex or any other type of addiction. Patients in pain should not be left to suffer, be forced tapered, be treated like junkies, and told they are mentally ill, have personality disorders, be forced into lock down in the ER, tricked into doing things that cause them to be released against their will, just because they are in PAIN. This is torture and the United States does not use torture, Torture = pain, and you can get anyone to say anything if you make them have enough pain, that is why it is called torture. Torture is being practiced in the United States on pain patients across the USA. In every State and every county.
Since the CDC guidelines were changed from the 2016 fiasco, there have been few positive changes for pain patients, they are still forced tapers, unable to find treatment, left to fend for themselves, treated with disrespect and degradation, and have trouble getting their medications if any. NOTHING has changed. This is such a very sad situation and the suicides continue. Thanks !

Janet

Live in servere and unrelenting pain 24/7. I am the unintended victim of this crisis. I am not represented at all

Mike Roberts

Mr Lawhern you have hit the nail on the head. We are a very misunderstood and underserved communities on the internet. Mainstream view us as tinfoil hat wearing ninnies for the most part. Yes there are those in the community that have a skewed view of why we can’t get proper medical care but at the end of the day the truth remains, we cannot get proper medical care! Kudos Mr Lawhern!

Rebecca Baker

I feel we the chronic pain patients are being treat inhumane and suffering at the hands of our goverment and are treated even worse by people when we go get are perscription filled i m almost glad we have to wear mask so they cant see us feel so bad for getting treatment for our condition . it so sad. When you actually go out in your car and cry everytime because we are treated so unfairly .and then making us choose between two medicine they we really need .so sad that are own government treats it people like this .

Rocky

Excellent.

DB Stewart

Yes, PM doc with held my pain meds until I gave him my 5 mg valium prescription and contacted my GP to discontinue. Suffer with anxiety and depression since.

Stephen

Yep, just moved to Mo. and am starting out with a new pc doc. One of the first things she brought up was my anxiety med clonopin and how dangerous it could be when combined with opiates. I take a whole 1.5 mg a day on average, been taking it for 2 years and am still kicking, in fact, I am kicking much better since starting this med. What is the best way to educate my doc about opiates, benzodiazepines, and cpp’s. I am going to try to talk her out of going to a pain mgmt clinic. Been to a couple of them in the past. They mainly try to talk you into different invasive procedures to generate some income.
Speaking of income, it costs me only $30 a month for pain meds vs the pain clinics whose multiple invasive procedures cost 10’s of thousands per year. The insurance companies could be saving a lot of money, cannot believe these greedy companies have not figured this out. It is much easier for me to deal with my primary care doc and staff than going through more pointless procedures.

Kristen

I totally agree with Red Lawhern that this is a great opportunity to make the point that chronic pain patients are indeed an underserved group! Many severe intractable pain patients that I know may not appear to be members of any group that one would expect to experience bias or discrimination. These people are nevertheless severely stigmatized for claiming to be in pain and seeking pain care. There is a crisis of undertreated pain in our country that is a social justice and civil rights issue. We in the United States of America have a practically invisible “underclass” that is comprised of people who may have little else in common except the shared experience of intractable pain. This invisible “underclass” of intractable pain sufferers includes people from all races, ethnic backgrounds, genders, and income levels, and their needs are not known, not understood, and certainly not being addressed. The daily struggle by intractable pain sufferers to obtain compassionate and affordable relief of pain is a social justice issue, a civil rights issue that isn’t on most people’s list of important issues to be concerned about. It is wrong to discriminate against minorities, against women, against members of the LGBT community, against the poor. It is no less wrong to discriminate against those who are in pain. Any act, such as issuance of the CDC Guideline or action by state governments, that further discriminates against people in pain by deliberate withdrawal of effective pain treatments condemns them to endless, needless suffering. This horrific treatment of innocent citizens is indefensible and must stop. Let’s all get busy writing and tell FDA what we think about this! Thanks Red!

Lynne Norris

strange that the current register is unavailable

David Acevedo

“Opioid crisis” was also formed with numbers ‘they’ KNEW were wrong. Twenty-Million legitimate severe pain sufferers ARE NOW _writhing in their beds_ for the illicit use, ‘street’ overdose issue.

Mattie Griffiths

Hi,
I am a paraplegic for 30 yrs. i took xanax & pain meds mostly methadone for 28 yrs. now my pain is Not controlled bc of the CDC Guilelines. My nerve burning pain is to intense anti depresants gabapentin & the like r not healthy to take several of these meds that do not help the intractable pain. Please rewrite these guidelines for the millions of people in the USA.
Pain meds r the only hope for many ppl that r not eligible for surgeries or procedure and for the rest of their life.. Thanks so very much Yes to many of the wrong kind of meds can hurt and kill ones kidneys Liver and more…
Most Thankful & Respectfully,
Mrs. Mattie Griffiths

Hayden

WHO is to say that a patient being treated for continuous, intractable, lifetime pain should not also be treated with benzodiazepines? The “experts” with ZERO pain management issues, that’s who! If one investigates the use(s) of benzodiazepines, one will find that they may be used for muscle relaxation as one of the primary uses of the MEDICATION. Those of us that have had knee, back, neck and other very invasive surgeries to “correct” an issue with the spine or joints are VERY WELL aware of the benefits of the use of benzodiazepines along WITH an opiate/opioid medication. Prescribed BOTH for 23 years, I no longer am “allowed” benzodiazepines…..period. NOT because my doctor does not believe that I WAS on a beneficially prescribed amount of both medications but, because DEA has “advised” NOT to do so. Along with forced” tapering” again because the prescriber was “advised” to do so, life in general sucks now. When the “experts” EXPERIENCE what the millions of pain management patients have to experience …for life, 24/7 then IF they, the “experts” can prove to me and the other pmp’s that “they” can do on a maximum, one size fits all dosage, then possibly we, the patients would have a little “faith” in what they are forcing upon those of us that have not asked for lifelong pain management issues.

D'Ann Roberts Jacobs

The feds could care less. About me and my pain. I live alone and have zero financial help. .$1200 once. My bills didn’t go down. It’s all smoke and mirrors.

maxlet

dunno if it’s just me, but the link to the comment form doesn’t work at all.

Sarah D.

It looks like the comment period expired on 2/28/20. Did I miss something?

Amber

Thank you, Red, for advocating for the pain community. It’s been more than 2.5 years since I was forced off of the meds that helped manage my pain for 15 years. Each day gets harder and harder. I’ve completely lost faith in doctors. I’ve lost faith in our government. I continue to advocate to help others, but I have no hope that I will ever get proper treatment. It hurts to feel like collateral damage.

Timothy Mason

I have already commented on this several times. Of course pain must be experienced to be felt and understood. Otherwise it is ignorance. The same with Rx drugs. Pain doctors do not used them, have’t used them so any claims made come from an article. They do not know. A pain doctor told me this himself. That is how I know.

Mr.SniT

Uh, comment period closed back in February …

LJCoach

The number of comments to this type proposal on the Federal register is pitiably small. It’s time for everyone who comments with a five paragraph ‘how they done me wrong’ medical history to stop making excuses, hit the link and write a handful of calm coherent sentences to make the case for a return to patient/syndrome specific prescribing. Please, leave out the hysteria and conspiracy theories that PROP highlights to ‘prove’ CPPs are as unhinged as addicts.

Thomas Wayne Kidd

My compliance with the rules of the contract at my pain clinic means ZERO. And I have had basically every right under “Americans with Disabilities violated without respect whatsoever. Lawyers in this country have wrote us chronic pain sufferers totally off. Any mention of a law suit against doctors is immediately thought of as if we are wanting sue the Pharmaceutical companies. It is so aggravating even trying to discuss these things with people in general or professional people. We the suffering and dying have mostly been written off by our fellow Americans. This is very disheartening and no wonder people are giving up and commiting suicide. Judgment in the present is soon coming to those who have brought this evil wickedness upon us. Don’t believe it? Hang on and watch! The Coronavirus didn’t just suddenly pop up out of nowhere!

Kimberly

It says comments were due by Feb 28 (?)

Thomas Wayne Kidd

I left my commentary on the website. Thank you very much National Pain Report.

Joanne

The link takes me to Request for Comments on the Office of Minority Health and Health Equity Strategic Priorities. Please provide the correct link!

Randy

A bunch of organizations that treat or did a one time chronic pain patients. Not really a site for the patient to make a statement. Jumped through the hoops and followed my doctors recommendations when I was prescribed opoids. Not wanting to be a guinea pig for the so called pain specialists. I was tapered off all pain. Meds. 2 years ago May 2020. I’ve been on one the counter Tylenol ever since. Can’t take ibuprofen due to blood thinners and swelling in legs. Went from ambulatory to painfully standing and staggering. Wouldn’t call it walking. The politicians took CDC screwed stats and applied them the way they wanted to. Just like thw stats about the covid 19 epidemic. Which is more lethal than thought. However not as lethal everywhere. Haven’t started drinking alcohol for pain relief. Had a problem with alcohol that I never had with opoids. That’s why I believe for some addiction is not necessarily a disease for some.i believe it’s a choice. I tapered off oxycotin and hydrocodone and had very few withdrawal symptoms. Unless you can call the return of debilitating pain in my knees, feet, nack, hip, shoulders. And hands and wrists withdrawal symptoms… I saw my doctor every 3 months. Never missed a visit. It’s been almost a year since I’ve seen my doctor. My blood preasu, AFIB, and cholesterol are managed and I don’t need my hand held for them. I some Times wish I was a drug addict. At least then someone. Would care about me getting treated for my dependency. More programs for that than There are for chronic pain suffers. Whis the real victim here……

Katherine Hicks

The cut off for submission was Feb 28, 2020.

becky

I am so weary, Red. There is no way out and no help nor compassion from our crappy uncaring government for chronic pain patients. What is the way out? There is none. No life worth living for my only child who has lost her life to disabling pain and autoimmune conditions. Why should my child pray for God to take her when there is medicine to help take her pain down to a 7? I want to see the law put in prohibition for alcohol which is the first gateway to everything and is completely a social buzz drug, encouraged by commercials, athletic events , so forth. See who gets upset then. Pain medicine is not a buzz for pain sufferers with incurable conditions. It is a life saver.
How about FDA members spend every waking moment watching their kid or grandkid or themselves try to walk, try to pick something up, try to eat, take a shower but cannot. How would they like to wake up every morning to a loved one crying and moaning in pain. Gov might as well hand out a death pill to chronic pain patients at least that would relieve these people of any morals with God to not end their own life. Because ending their life is the only way out at this point. Shame on FDA. Shame on CDC. Shame on President. Shame on the House and Senate.