Tell the Task Force!  Advice on Commenting to the HHS Task Force on Pain Management

Tell the Task Force! Advice on Commenting to the HHS Task Force on Pain Management


By Richard A Lawhern, PhD.
Because I write and speak widely on public policy for the treatment of chronic pain, I am fairly often asked what I would recommend to patients, caregivers, and physicians who want to comment on the recommendations of the HHS Inter Agency Task Force on Best Practices in Pain Management. I offer the following:
The public draft of the Task Force recommendations can be found here, along with directions for submitting comments through the Federal Register or by email. Deadline is the end of March, for either.

Richard “Red” Lawhern

I sympathize with anybody who may find the Task Force draft to be a tough read. The text is ~60 pages with 446 references. It is written by doctors to inform legislators and other doctors about what needs to be done to resolve gaps or conflicts between existing best practice standards for the management of all kinds of pain. At least 25 experts in several working groups contributed to the writing. Not many patients will have the background or energy to comment on the entire document.

So how can you contribute? There are several ways.
Task Force recommendations are about both the science of pain management and the lived experience of patients and doctors. Patient discussion panels and dial-in speakers were invited and heard in both of the public meetings of the Task Force, as were short public comments by speakers in the sessions. Text search tools were used to process the Federal Register comments and identify areas of concern among the hundreds of comments received before the two meetings. These steps are a major improvement in approach. There is much in the resulting recommendations that is patient-centered. So be sure to acknowledge the good work that many medical professionals turned in.
That said, be aware that the Task Force is likely to receive thousands of comments. If you want yours to count, then don’t copy and paste from somebody else’s remarks. If you want to endorse the 38 pages and 65 comments I’ve already submitted, then you can email me at lawhern@hotmail.com and I’ll ship you a working copy to read first. The Alliance for the Treatment of Intractable Pain is working on a condensed and issue-focused version that will fit within the three-page text limit of the Federal Register. So you can endorse that version rather than mine, if you wish.
As you are gathering your thoughts, there are several areas where your lived experience is very important and the Task Force needs to hear from you — above and beyond their specific recommendations to Congress.
  •  If your doctor has told you that he or she is afraid of losing their medical license or admission privileges because the DEA or State authorities may investigate them for over-prescribing, then tell the Task Force.
  •  If a doctor has refused to continue treating you with opioids or demanded that you taper them down even though you’ve never failed a drug test or taken more than prescribed, then tell the Task Force.
  •  If your doctor has told you that the CDC Guidelines are law and they’re not allowed to prescribe more than a fixed amount, then tell the Task Force. This isn’t true.
  •  If you’ve had a bad reaction to Tylenol or Ibuprofen prescribed instead of opioid pain relievers, or they simply haven’t worked, then tell the Task Force.
  •  If a pharmacy has delayed or denied renewal of your prescriptions, then tell the Task Force — especially if the reason was a false alarm from your State Prescription Drug Monitoring Program.
  •  If you’ve ever been called a “drug seeker” or been refused treatment at an Emergency Department or other doctor’s office by a doctor or their staff, then tell the Task Force.
  •  If you’ve tried non-drug therapies like cognitive behavior therapy, acupuncture, chiropractic, massage or physical therapy, then tell the Task Force whether or how well they worked (or didn’t).
  •  If you are a Veteran or you know a Veteran who has been denied opioid pain therapy at a Veterans Hospital, then tell the Task Force.
  •  If you personally know a family that has lost a member to suicide or who became bedridden because of untreated pain, then tell the Task Force.
There is one thing you probably shouldn’t tell the Task Force and it’s your entire life story. I know it’s tempting, because patients are so often not heard or credited with knowing what works for them. But remember that these doctors have already heard the stories of thousands of patients, and they really are trying to help. Don’t drown them. There are only so many hours in the day.
Go in Peace and Power,
Red Lawhern

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Richard A Lawhern is a technically trained non-physician advocate for people in pain, with 22 years experience in patient support groups, and over 70 published papers and articles.

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michale prendergast

nerve damage in legs is very painful ! so why the hell stop stop someone from finding relief ! no one should ever be in pain period ! let alone have a limited supply of relief ! who is trying to play God here ! why would anyone get between a healer and the sick ! absolutely outrageous!

Cindy Albaugh

I have been treated for my pain 35 years and was my pain was managed at least fifty percent or more before the CDC made these guidelines. I have a severe PROVEN NEUROPATHY of both legs and feet and also PROVEN CHRONIC PANCREATITIS. I also have sarcoidosis and RA. I also have scoliosis and kyphosis which gives me horrible spasms. But I seek pain management medication because that is all that has proven to help my horribly painful neuropathy in my legs and feet. I see neurologist and pain doctors. My pain doctors say they had a meeting and non of them will prescribe over the 90 dose a day because they won’t loose their license over the CDC guidelines. I have been suffering horribly at the low doses and I can’t even afford to try medical marijuana on my low Social Security income. And WHY can’t people try medical marijuana and low doses of opioids if the pain doctors won’t manage our pain anymore? One or the other they say. I’m afraid that even if I would try medical marijuana it wouldn’t work. My last pain doctor appointment, the doctor threatened me that if I don’t say I’m getting 50% relief on the low doses he will take me off all medication!!! Oh so now I must lie to the doctor about how much relief I am getting on the hundreds of questions each month. I’m now a senior citizen and have suffered 35 years and never abused my pain medication. And now I am being treated like NO ONE CARES. I definitely think the CDCS new guidelines are going to cause many to decide to locate a drug dealer on the street or commit suicide. Count the bodies CDC. And meanwhile drug addicts are still getting their fix of heroin and fentanyl everyday. While pain patients suffer. I would like to give those making these decisions my pain for one day! One day! Now think 24-7 for 35 years. It was difficult to want to live before. It’s even more difficult now.

Michelle

I am a retired Air Force family member. I have a nerve disorder and also an autoimmune disease. When I moved from one state to another and had to receive treatment at an Air Force base, the physician totally took me off of my pain medication without any tapering at all. I was in excruciating pain and didn’t sleep for over a week before I could get a doctor on base to give me a prescription for any pain medication. I had to change physicians several times before I found a compassionate one that cared about his patients more than CDC guidelines. During that time, I was treated as if I was an addict and looking to get high. I have never felt so degraded and undignified. After supporting my husband, while he served our country for 23 years, I am treated like an addict and a criminal. There needs to be a balance of better pain control guidelines. We need to give the power back to our physicians that have the education and knowledge to treat pain effectively.

Michelle

I have been dealing with chronic pain with my third back surgery Failed lumbar fusion 1-3-2001 my pain meds were cut in half in 2016 the same year I’m now paying $1700.00 a year to see my medical doctor on social security disability living alone , I just had my 4th back surgery still trying to heal from it which is a joke in the hospital only getting not even half the does I normal take plus two Tylenol, It’s no fun not getting sleep because of the pain your in even before #4 , Just to try to do what a normal person does say vacuum that takes me all day and the pain level goes way up , I’m told the day will come that the insurance will refuse to pay for my pain meds well yes it hit me ! They refused to pay for one and approved to pay for the other ? Doctors office did get it approved for me for a year , To take away my pain meds will put me totally into depression and it does scare me that the suicidal thoughts I had in 2001 will come back that the pain is just to much to deal with ! The doctor told me this surgery would help me , well it didn’t in fact it only made my pain worse and I’m really pissed about it ! I just want to function I just want to have the best quality of life and to take my pain medication away will only put me in bed non stop , depression and the will to live will be gone what’s the point !
In fact my doctor is trying to tell me I’m on Heroine and I’m not buying it ! I’m not all high acting all crazy I function!
Go after the drug dealers the real problem makers not us we are the ones that shouldn’t have to suffer and pay the price for a medication we need and a medication that we are not abusing !!

Hollie

I would say point blank that for those of you ever had ESI’s that we’ve been deceived by drs about the FDA warnings. Sometimes we just need drugs to survive, have a better quality of life and they push other crap that is doing more harm to us or just prolonging the inevitable!
I’ll make my voice heard!!
There’s a huge difference in addiction and dependent on a better quality of life! Tired of being put in the same category as a druggy! Animals don’t have to suffer as most pain patients do. Let drs do their job.. the one the bowed to do! Quit scaring our drs into lowering doses or stopping meds which is dangerous to do to someone! We know our bodies.. open your eyes and read our medical reports.. view our X-rays!! What you see… and what you can’t see.. pain!!

Erin

I am a Registered Nurse, and I have arthritis and CRPS (Complex Regional Pain Syndrome-formerly known as RSD). CRPS is one of the most painful conditions known. I do not currently take opioids, but that is not to say that I may not need them one day. My disease is currently managed by multiple modalities, but I am still suffering every day. When these people are talking about their pain being so great that they are considering suicide-THEY ARE NOT JOKING!!! Imagine what it is like to go to bed every night with pain, sleep an unrestful nights sleep (if you can call it that), and wake up in the same pain you went to bed with. It is unrelenting! Exhausting! Depressing! Bone tiring!
People MUST have some relief from this. If you don’t, you seriously do begin to consider other options.
One of my dear friends and also my brother, who is a veteran, have chronic pain. They have both been on opioids (managed successfully) for many years. They both get up each day and function well due to the fact that their pain is managed. Recently, my friend was completely removed and my brother was drastically reduced from their drug regimen by their physicians. My friend, who lacks good health insurance, is stuck with her situation. My brother’s wife called multiple physicians before finding someone willing to treat him due to the opioids. Most physicians do not want to take on another patient like that out of fear.
Many others get labeled as malingerers or drug seekers. Often this is not the case; their pain has not been properly addressed due to judgement or misunderstanding.
So, I guess I will sum it all up by saying that opioids do work for many, and this should be left to the patient’s physician to determine. After all, they are the ones who went to medical school, know their patient, and see them each month. Let the physicians practice medicine-as they were trained to do!

I thought I would update status on the comments to the HHS Task Force.

First of all, the Task Force has been charged with looking at the entire body of knowledge and clinical practice standards concerning management of pain. This includes the CDC Guidelines, of which they are quite critical. I’ve pushed them to go a step further and recommend withdrawal and rewriting by either National Institutes for Health or the National Academies of Medicine, which are vastly more qualified than CDC. We’ll see if they’re willing to do that. I’m sure the CDC representative on the Task Force will have a hissy fit if they do.

Second, as a “FYI” for NPR readers: earlier this week I submitted an end-to-end line-in/line-out revised draft of the Task Force recommendations document. This revision is written in the editorial “voice” of the Task Force, to make it easy for them to review in their work groups. They can vote “thumbs up / thumbs down” on my proposed wording changes, rather than forcing them to rewrite from scratch based on “revise this / delete that” recommendations.

Between now and April 1, Ed Coghlan has invited me to do a few more blog articles which lay out for readers, the kinds of changes needed in the Task Force draft recommendations. Public comments close out on April 1 and the tentative schedule for final submission to Congress is May, I have heard.

So hang in here. We’re working the problem on behalf of people in pain.

Please cpp patients and all americians as a whole take this time as a whole to respond to this opertinuty to let americia know our plight of having access to our life giving and life saving pain medicine is a life or death issue to intrackable pain paatients with these horrible painful medicial conditions period!?!?!

Bill

As a chronic pain suffer , I understand the drug problem out there and your concern, however, people like myself who need medication to be able to live a better life and not commit suicide because of pain , we should not be categorized with the drug addicts out there. Doctors shouldn’t have to fear having there license pulled just to help someone legitimately that has real pain. Getting strict with pain meds is just going push people to worse alternatives, street drugs, suicides and more. Please rethink this over.

Angela

Julie Calvert, In my humble opinion, both of those items are important for the task force to know. They need to know how doctors will not take abandoned patients and that certain non-opioid pain medications are much more dangerous to take than the opioids ever were.

Angela

Dee, The HHS task force on best practices in pain management is an outcome of the CARA Act, (a bill) in congress and is in response to the so-called opioid epidemic and the CDC guidelines.

The Department of Health and Human Services Task Force is to identify contradictions, make recommendations, etc., for best practices in pain management and addiction to congress.

If you’d like more details about the purpose of the task force and what we as patients with painful chronic diseases can do to make our voices heard, or if you or someone you know needs moral support while struggling with the under-treatment of pain, please listen to this podcast found on YouTube and at CAWNation.com https://www.youtube.com/watch?v=zW72JBqYtzg
Information about the task force starts at approximately 15 minutes into the podcast.
Please ask if any other questions.

julie Calvert

I hope my comments were short enough, once i got into it i mentioned two things i hadnt meant too, that the non narcotic meds they talk about alter your brain worse than a stroke and that as a chronic pain patient it is impossible to get a Dr when you Dr fires you, you are orphaned.

Dee

I’m sorry to say I’m confused is this draft connected to the CDC Guidelines? Or is it separate? Why do many people in charge? Very confusing. Thank you for guidance.

Perhaps the most important message you can send to the Task Force is “please recommend repealing the CDC guidelines” and all State and Federal regulation that mention them. FYI all, I am working with an MD co-author to expand that message in a comment to the Task Force that we will submit for prominent publication in a medical journal.

Angela

Debbie, No you do not need to endorse someone else’s comment. (I know this from commenting on other issues in the past). I believe Red is only making it a suggestion for those who aren’t sure what to write.
And yes you may comment more than once. Thank you and do please spread the word about commenting to the task force.
I don’t know if I’ll try to read the guidelines in their entirety and would love your take on them here.

Valiant

Hello! Scroll through the many, many comments on just this *one* article and read the true stories of torture and despair. You’d have to be dead not to feel a tug at your heart strings.
Hellloooo!!! Is anybody out there listening???

Debbie Custer

I’m in the process of reading the Task Force Guidelines before commenting. I am going to turn in my own comment when finished. Can I only comment or endorse another person’s comment? I wasn’t sure if it was allowed to have my name appear more than once. Thank you for the advice on making my comment….. Debbie

Vicki Scott

I hope I am included. My injuries are vast and my pain is everyday. We need help to be seen as people in need of help to try and manage our cronic pain. We are profiled from what others have done but just because there are some people who abuse the system you can’t say everyone does. I have been chronic pain patient sinse 2013. Now I fimd out I am terminally ill and I can’t imagine what my day would be like without help. I’ve always followed the guidelines. Ive passed all drug test and to be honest i truly not know how anyone could be abusing the system with all the strict guidelines. I have no problem proving to them I don’t abuse but I am terminal from the lack of care and compassion. How is monitoring the doctors who hurt and don’t treat? I wish people could hear my story and find out how I found out I am terminal and why. If I could find a reporter I would tell my story that probably would scare most people who went friom being perfectly heathly and 2012 is the key date. I was lied to from the start. In the miiddle as the terminal diagnosis was made but not once was I told or helped. Now I was profiled by to major 2 major medical facilities and the other 2 just didn’t feel the need to commicate or help. So 4 major health facilities and billing fraud so bad. My disability isn’t based on my true injuries so if there is anyone out there wants a story that will rock the healthcare industry as I am terminal but still being denied the proper care. I was told even though I have medicare advantage plan but too young for straight medicare and supplement and paying for insurance PPO plan where I don’t need referrals or a PCP. But don’t matter if I get referrals as I was told once a doctor gets the referral and reads your medical records they have the right to turn you away. Well that has happened to me 3 times as I have tried to get the help I need but if doctors have the right not to treat and you just get sicker something is very wrong with our healthcare system.

Monica

I have adhesion related disorders. Taking Norco makes it possible for me to work do chores and run errands. My pain clinic has forced a taper. I now am in pain all of the time because I dont have enough to relieve my pain. It is so hard to even get out of bed now.

Valiant

If you want to learn more or would simply like to hear Red Lawson and Dr. Kline talk about this info via audio and video than please go to this YouTube link: https://www.youtube.com/watch?v=zW72JBqYtzg

John

I am 65 years old and just went thru withdrawls by myself and unsupported for 15 days now. I had been with pain management for 32 years without any problems but my clinic recently closed and after many applications, no clinic will pick me up because I used 40 mg of methadone, 3 times per day. I have Crohn’s and can not take NSAIDS. I have always worked and contributed. What sense does this new policy make to put someone like me down? Wish I had known when I was still on my feet. This is a crime against my country’s citizens.

Michele

What about older people with chronic diseases for which there is no cure. Aren’t we entitled quality of life? The quality that taking the edge off of our pain allows us to have.
Shouldn’t medical people specializing in pain management have been the prime movers in the whole pain legislation situstion.
The medication doesn’t totally delete the pain but it helps me live like a normal person.

Anonymous

It is so frustrating to be treated like a criminal because I have a medical condition. I have CRPS, and have been treated with opioids for 5 years. When I first started treatment, I also took Lyrica. For me, Lyrica is so much more dangerous. I’ve developed a “tolerance” to opioids, and I am fully functional with them. So many people have no idea that I take them. However, with Lyrica, I could not finish my own sentences. And, I wasn’t even aware that I was a complete mess.
It’s safest to be adequately dosed, so that you take almost the same amount every day. If you don’t have enough, people “store up” for the worst days and fluctuate their dose. No one thinks about the unintended consequences.
I’m now unable to get benzos for anxiety, which I’ve taken for many years. Anxiety and losing sleep is NOT good for me. Even if this task force can soften the response, how will I find a Dr who will prescribe?
The CDC was reckless in starting this campaign.

Nyk Kelly

Thank you so very much for the information and help, Mr.Lawhern.

Annell

With no pain meds as per Drs pain office i tried injections work a little for 2 weeks of course I can not afford either after 3 I stopped waiting for new Dr I am going to have to move to assist living I can’t vacuum or cook. I’m in bed 95% of time on stomach can’t lay on sofa because of pain. Hve no idea how I can move I know I can’t pack on SSD really can’t afford to pay. To make it short several times a day I feel like giving up.

t I’m just waiting and hoping for help. Hve fibromyalgia and arthritis in 1997 in townhouse would hve to crawl up steps. I will stop here pain and telling myself to breathe but guess u get point as others say shower I wish store I wish if I get shower once a week I’m doing good food store couple times month I hve chip ice cream and pop corn for my meals which I eat in bed on stomach

Cathy Pfeil

I am in Palliative Care. I use only one group of Doctors and Hospital. Everyone is hooked up. I have not been able to get any pain medications since last year. One doctor told me he could loose his license, another that since I did not have cancer I could not have pain medication. It doesn’t even matter what my long list of illnesses are, and my list of tubes and even a pouch, I have a very small window daily to get up, or shower, or have any life. I am in bed all the time. When I took pain meds I could at least interact with my family and paint. I am at the end and need help I can not seem to find. Heroin addicts shoot up at the end of my street and leave their needles and syringes on the street. Do you really think that any guideline about drugs is going to change their behavior yet I am punished because I follow the law?

Matty

Being a compliant chronic pain patient for over 15 years, I should NOT be left to suffer.

Karen kremer

how can i tell the task force? how??? they did all those things to me

Laurie Kimmey Johnson

I am a chronic pain patient that has been in a forced taper of opioid meds recently. I have been reduced to suffering over needless reduced meds. I have been in pain management over 20 years and never failed a urine drug screen. I feel like collateral damage now. My quality of life is nonexistent, and I am a practicing nurse. My life was pretty good compared to now. I fear the CDC Guideline is going to kill a lot of people. My pain needs to be controlled, and I don’t accept what has happened to me. There are so many of us out there going through needless suffering…the exact reason opioid therapy gave us QUALITY OF LIFE

Dee

Kelly White I just read your story. I’m so sorry. Please join ATIP on Facebook or Twitter CIAAG.net is a good group.

Tammy Cole

My intervention pain management dropped me via a letter. They gave me two reasons 1- I’m not making enough progress. 2-drug screen showed methadone in my system. Letter was date 2 weeks after My scheduled appointment, I immediately called, I left a message for the doctor, I ask for a return call asap, RE:letter I received. After 4 days and no return I called again left message that my opinion I am better, I’m not pain free but able to function better. And that I’ve never taken methadone or know anyone that does. Please call me! 3 days later I called told them that I talk to the pharmacist and he said my benedryl and/or advice would both give a false positive for methadone. They just abandoned me with not even a return call.

The pain Dr’s had told me they were required to do other therapy than just medicine, I did physical & occupational therapy, breathing therapy, yoga. My insurance wldnt approve acupuncture, my immune disorder makes me not a candidate for steroids injections or sensory implant. My last visit the Dr’s discuss their concern about me not being able to have the steroid injections as this is what is recommended. The PA ask what’s the immunology specialist say about my immune disorder, I explained I have infusions every 3 weeks and will the rest of life, so if that’s the reason they say I’m not a candidate for steroids injections I’ll never be able to have them. I wish I didn’t have to have the infusion ad they cost 18,000 every 3 weeks and I pay 20% of that. I leave 2 weeks later I get a letter dropping me from the program, with what I feel is made up reasons. What am I to do?

Dee

This is a link to “Tell the Task Force”. Please write to them. Address what they are addressing in the report, gaps inconsistencies. Take Mr Lawhern’s advice. Take David Cole’s advice. Write to them. You can be anonymous. I gave an email address so I would be given a receipt for my comment. You don’t have to tell your story. You can just address what is happening to everyone in pain. While each story is heartbreaking and needs to be told, the most important part is to address what HHS is asking for.. There are only 3K characters allowed. It seemed like a lot until I finished and there were only 260 left LOL We must speak up, Men Woman and children are suffering. Please comment. I hope the link it allowed. Thank you

https://www.regulations.gov/document?D=HHS-OS-2018-0027-0001

Oldstar

This is Agenda 21 folks. You can sit and snicker that this is a conspiracy theory right down to the time the militarized police put you in a FEMA camp. Wake up. This is a depopulation agenda just like Nazi Germany. Obomination wrote it into Obominationcare that the elderly were not to receive medical care. Has anyone bothered to read it?

Even trying to explain what is wrong with me makes me sound like I am a liar and drug seeker. Being educated about my medical condition and to know what I want makes me highly suspect. Five years ago after I was diagnosed with Multiple Systems Atrophy I was told that this neurological disease went quickly, and I should put my affairs in order because I had a short time to live. I have lived much longer than any of my doctors expected so I must not have MSA, like I diagnosed myself and I am now faking it. For drugs. I do all kinds of alternative treatments for pain, PT, massage, cupping, acupuncture, TENS, meditation, positive attitude. I use an electric wheelchair, I have a supra pubic catheter and an illiostomy. I use a bi-pap to sleep, have pads under me so I do not leak on the bed or couch. I hurt all the time. I use ibuprofen, CBD and THC. I have started drinking before bed so I can sleep. I ask every doctor for pain medication. Not something strong, hydrocodone. Maybe 10 a month for the really bad days. I really want something else, but I am afraid that they will really decide I am a drug addict if I actually asked for what I need, medication so I can live my life, go places, interact more with my family and friends. Instead everything has fallen away. Am I depressed? You bet. Do I think my level of pain is effected by my depression? Of course. But I have worked hard to stay alive and engaged as possible, couldn’t my doctors help?

Dr. Lawhern has earned the respect, or at least attention, of many professionals and laypeople alike. He works tirelessly and refuses to stop fighting for the sacred doctor/patient relationship and uses real numbers, not PROPped up statistics based on false ‘overdose algorithm’ used by CDC (Puja Seth et al American Journal of Public Health). Mr Seth at CDC dept of Unintentional Injury published this recently. Fact check me!
#Starburst multi state/federal lawsuit.
#ATIPusa.com

Wanda Lindner

Hi everyone, I’m a pain management patient. I have worked for 47 years. I didn’t know that when you turn into a baby boomers retired that the government didn’t want you around anymore. That’s what I feel like. I had a very good PCP doctor. And I have had trouble with my bones all my life. And a few more thing I won’t list . My doctor sent me to pain management and the doctor there did a Lot of his test. And I started going to him. And he’s a good doctor. But when this opium epidemic started my doctor reduced my pain meds. I don’t get around no more I stay home all the time the meds he has me on now don’t help with my pain. People don’t understand the pain you are in. And what so funny is he worked with me till he found the right dose. And now he says he can’t take care of me the way if would like. He said the goverment was telling them what they could do. Doctor’s take an oath to do no harm. Someone please tell me why do I have to live out my retirement in pain praying for God to just take me home. I don’t care if the government makes them stop making pain meds. Kid will get there drugs somewhere. Movie stars will always get their drugs. Maybe one day the government will realize that my mom hurting. Thanks for listening.

Pandora Summerz

You’re one of the BEST Red!!
Thank you for fighting for many of us whom are too weak. Your guidance has been a light in a very long dark tunnel.

Carol Poirier

For 8 years I was treated by a Rheumatologist with every opioid, and way too many drugs. When the opioid scare hit I was fired, told I was a problem patient! They were dismissing Fibro. patients. Had a hard time finding someone to see me. Another Rheumatologist I saw told me he coulld not write me these drugs and got up and left me sitting there. Would not allow me to see the Pain Specialist in practice or anyone else! Decided I could no longer live on the stuff so I sign myself into a detox center. Lived in horrible pain 8 mths. Found a new Pain and Spine Doctor. After 4 months on Norco, had problems with codeine but dr. would not see me after the office manager told him I was Suicidal after she heard me say I can’t live in this pain. Never failed a test, saw a rude P.A that said terrible things to me. Told the dr. I was hearing voices, next dropped my meds. and told me I needed to see a Psyc. I went through a terrible withdrawal at 66 yrs. at home, no help. Even ER would not give me withdrawal meds or help me. All this in the same area. Have gone to major city to see neurosurgeon having level 3 fusion in neck in 4 weeks. Suffer from terrible pain. I refuse to go on any pain meds. After surg. I am to see doc. for suboxone to wean off PO meds. So I won’t go through withdrawal again. This area is known for bad doctors. Can not trust anyone anymore. I was a surg. tech for 38 years. I would have never treated a patient in these ways. I don’t know what to do after all of this!

David Cole

Please take Red’s advice! He’s done so much for the pain patient Community. He needs a humanitarian award of some kind. The only way we win this fight, is if everybody jumps in in helps in whatever way they can.

Donna Winegard

My 27 year old son had scoliosis surgery in 2014 and had chronic pain issues.He family MD stated he could not order his pain meds for him.He saw a pain clinic ,but was only on tramadol, gabapentin,flexeril and Aleve.I don’t know if he asked for stronger pain meds,but he was afraid of being labeled a “drug seeker”.He committed suicide 2 weeks ago.

David W Cole

thanks Red,
I just want to let everybody know, I’m a pain patient that’s medicines been cut by 2/3 I’m pretty much bedridden now. I know what everybody’s going through, some are worse off than others.
My message to you is: “thank the professionals that are trying to help us every chance you get”
I told my story a hundred times, I’ve been interviewed by to news agencies and the last time I interviewed with a New York outfit.
All I want to tell you, is telling your stories on here will get us nowhere, it might make you feel better for a minute but it’s not going to stop the madness.
You need to get involved with Big advocacy groups.
Learn how to fight back, tell your stories to your state reps, send letters to the president, vice president, file complaint with the Medical Board in your state, join operation Starburst they already have eight to 13 states suing the government now. There are thousands of Facebook groups out there. Learn how to fight back so your voice is heard. Here’s a place to start, I watched these two very critically ill women start an advocacy group. They are growing like weeds, there is power in numbers. You can join for free, however they have a $25 and a $50 membership, I highly recommend you take advantage of this and learn how to fight back. All the money they get goes toward changing the insanity. They have letters you can download and send to your state reps, along with many other tools. Please join us, the only way this stops is in a court of law.
Best of luck

ciaag.net

I’m a pain pump patient for20 years. My doctor knew the pump was on recall for 5 yrs. The alarm went off on Jan 9th, 2018. He wouldn’t fix it. I had Dilaudid and Fentynal running 24/7. He left me in society to die. I went through withdrawals all by myself.. He needs to be told how wrong he was for doing this to me. The next patient he has might die…He was in the woods hunting. Didn’t have time for me… Be careful folks…I was told that nothing could be done to him because I didn’t die..I need help & closure so I can move on with my life…Please contact me….I need help….

Alison

Thank you for the very helpful link and letting us know there is a place to voice our opinion of their policies. Following your guidelines, I have submitted my comments and hope against hope that they will do some good.

Holly

Dear Mr. Lawhern,

You’re the best!

Jillian Drexler

As always, thank you for your expertise and tips on this, Dr. Lawhern.

For those who have asked: at present, the Federal Register website isn’t working due to the government shutdown. But you can send your comments to the HHS Task Force by email to paintaskforce@hhs.gov . Your input may be more effective if you keep it focused and short, along the lines suggested in my article above.

You can also support National Pain Report and gain more public visibility for this article in Google searches by commenting separately here on NPR, below. This article is running third on Google this morning (Wednesday), for searches on the key terms “HHS Task Force” pain management. The actual HHS website is running behind various commentaries “about” the effort.

Go in Peace and Power
Red Lawhern

Gwen hanson

Red Is this where you want us to leave our info about are Doctors Treatment and or any issues we’ve had since all the new rules?

Bev

Kudos for speaking up! I would respond to the HHS Task Force – could we have an active link so we can send our comments? Thank you so much!

Terry

I’ve been seeing my pain doc ten years and at one point my pain was being managed really good, my life was good, I was active and happy. My doc told me the DEA was forcing him to cut my meds or he would lose his license. So I went from 195 mgs of oxycontin daily to 55 mgs daily and now I just sit on my couch. I won’t go into the 20 different things that cause me excruciating pain 24 hrs a day or that I’m a rapid metabolizer, which means pain meds work half as good and last half as long as a normal person. If you need to contact me please feel free and I will tell you much more.

Michelle Diane Davis

I have had chronic pain for over 20 years. I have blood tests to confirm lupus or MCTD. I was told recently by pain management that I was too young and opiates cause more pain. I have been basically bedridden for over 9 months and cannot function to do daily tasks. My pain meds (Norco) was cut in half last year to 2 a day, which is not therapeutic for at all. I get new information about opiods each time I see my Dr. It’s ” you’re too young, “opiates make pain worse” opiates are not for pain” etc.. I no longer have a quality of life because of this.