HHS Chief Medical Officer to Pain Community— “We Hear You”

HHS Chief Medical Officer to Pain Community— “We Hear You”

In a recent interview with the National Pain Report, Dr. Vanila Singh, the Chairperson of the Pain Management Inter-Agency Task Force kept taking the subject back to the volume of commentary the effort received and the influence it had on the final report.

The report provides advice and recommendations for the development of best practices for pain management and prescribing pain medication.

Dr. Singh, who is an anesthesiologist who has treated pain, believes the report shows that the challenges are more than just about treating pain—that they reveal it is “a front-line health care issue.”

That is why she emphasized the importance of 200 professional organizations who commented and over 160 of them who have praised and supported report, including the American Medical Association which has strongly endorsed it.

“Many organizations came out with amazing support of the draft report with great insight,” she said. “This is very important in depicting the relevance across all health care providers and stakeholders, as well as their interest in the Task Force Report.

All told—over 9000 comments including pain patients, pain professional groups, nursing organizations and pharmacists were received.

Dr. Vanila Singh

“The commentary helped make the case of how alarming this situation is,” she said. “The comments had an effect on us the report we wrote.”

“We really heard people who have suffered, continue to suffer and yet still made the effort to write to us,” she said. “My message to them is you always have to have hope.”

The Task Force is an advisory panel and doesn’t have rule making authority. The attention the report has received is already sparking some Congressional interest.

The U.S. Senate Committee on Health Education, Labor and Pensions will hold hearings this summer. The President, Texas Medical Board, Dr. Sherif Zaafran, represented State Medical Boards on the Task Force and he promised to work to integrate the recommendations in his state.

This is an important point because each state has its own approach on how it oversees and/or influences the treatment of chronic pain.

The report covers four main areas—education, access to care, stigma and risk assessment. (If you haven’t read it, you should)

Dr. Singh acknowledges that for a real change to occur it is going to take “all hands-on deck”.

And she emphasized “that’s not a cliché”.

“A huge effort is required because chronic pain touches people of all different backgrounds, different medical conditions,” she said, emphasizing that more education is needed.

The “education” she talks about includes elected and regulatory officials in your state. That’s why we asked Shaina Smith of the U.S. Pain Foundation to write a column that tells you how you as a chronic patient can advocate as an individual from your home. (Read here)

And of course, it includes the academic community which is why Dr. Singh hopes that medical schools and nursing skills will know about the report and start to review it and incorporate it into curricula.

For many in chronic pain, the opioid situation is issue one. We’ll have more on Dr. Singh’s comments on the issue, how the report addresses and the changing landscape given recent CDC, FDA and AMA declarations in our next report.

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Authored by: Ed Coghlan

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Beth

In Colorado, doctors feel threatened if they prescribe opioids as over 70 doctors have lost their license & some even imprisoned [some may have deserved this, but not all]. and the State medical board will not back them- this is what my doctor told me. I was on the same dose of opioids for 17 yrs. Now I feel like I’m fighting for my life- literally- as some of the treatments offered could render me paralyzed [ie…SCS implant though I have strong myoclonic jerks dislodging wires- potential 4 paralysis], leave me in worse pain, cause a stroke, heart attack, or death [ketamine IV- HTN, CVA, MI,…] Death would be preferable.
That said, I also feel threatened as a patient. Yes, patients have a right to refuse treatment, but doctors also have the right to refuse patients who refuse to comply to their treatment plans. For those of us who live in a remote area- doctors are not easy to find, and the few here do not want to take on the responsibility caring for patients who suffer with incurable intractable pain that, though incurable, are not fatal in & of itself.

Dar

The only way anything can change, and pain patients can be treated fairly, and quickly, is with legal representation, of those who know the law, and are willing to stand up and, fight some of the weakest, and lowest income victimsofthis war on pain patients. If intelligent, caring, and amazing advocates of civil rights are willing to fight with, and for, legal representation to help pain victims fight for our right not to suffer in pain, wemay get results, and sooner. I realize this is not an easy task. Law professionals work hard to represent their clients, and deserve to be compensated appropriately. One of the roadblocks is that many pain patients can not afford to pay for legal representation. Any professionals that would be willing to stand up for our rights would be heroes in our eyes, and in the long run, in America. I am not sure I am using the correct wording for this war on pain patients, and the need for legal representation for the laws that continue to be broken, and violated. The point is- Pain Patients continue to suffer, be tortured, and die, and this is against the law. A crime against humanity, right here in America. There must be some legal professionals out there who know tnis is wrong, and respect our civil rights, enough to be willing to hold the guilty accountable. Is their anybody out there williig to fight for some of the weakest who continue to suffer every hour of every day, but do not have the strength, or knowledge, to stand up for themselves?

Cakes

Pain patients are battling for everyone … but people without pain do not see that! YES … some of us were prescribed these pain medications for many years! Many of us are absolutely dependent on these medications! Why is it so hard for people to understand that we were desperate for help when we finally decided to try the same medications that are being vilified? I understand that these medications are not the answer for many but when we are in so much agony that we are contemplating killing ourselves .. YES … it is time to act … before someone finds us dead!

Look deeper! Anyone who is injured or needs these same medications will not find anyone willing to prescribe them. Look at the number of people having elective surgey and HOLLERING … NEVER AGAIN! Physical therapy and exercise will not help these people if they can not tolerate the activity! All I am saying is doctors should not be writing perscriptions for 3 days of medication when they know it is the very least people tend to use.
That is a recipe for disaster in itself. NO .. they do not need to supply most people with a month of medication but dont leave them short either and force them to suffer as they have chronic pain patients! Doctors are going to find that they have no patients that will agree to elective surgery! BRING IT ON! It took our govermment too long to act on the problem of addiction .. and when they did .. they addressed it in a way that is hurting people who do not have addiction problems. They made this problem with addiction about the medication and not the people!!! Quite frankly .. None of us know what we would really do if faced with pain but if it is severe enough … believe me when I say that you too would choose relief! If it is not available you could find yourself in a place that would end tragically! Now doctors might not be able to write perscriptions because they do not yet have the new perscription pads.
I 🙏 for guidance and help for all!

renee white

Pain patients are being treated like criminals addicts are being treated like the victim and let me tell you what it’s like to be a true victim I’m 48 years old and I am now completely homebound I have had my pain medication cut in half in the last year and my life has drastically changed I am now homebound I need help bathing I need help getting dressed I need help keeping my house clean I need help cooking I sleep 2 to 3 hours a night if I’m lucky and that’s taking 5 melatonin and 3 Benadryl my pain is agonizing not only that but I’m treated like I’m Doctor shopping because my three Clinics of shut down I’m having to drive an hour each way to see a doctor who just doesn’t give a damn he didn’t even tell me he was cutting 30 more pills from me he just did it and I’m tired of it because it shows were exempt from the governor it shows were exempt if we are in pain management yet we are not treated like we are exempt we are treated like we’re supposed to be at that 90 mme that is only for opioid naive patients when you have been on a medication longer than 10 years decreasing it makes it so much worse because your body is already immune to it you need more not less I now have a torn labrum in my hip for the fourth time I’ve had 3 surgeries to repair it this happened in 2017 and nobody even bothered to tell me my other hip has a torn labrum I have two herniated discs in my back I’ve got lupus rheumatoid fibro a very very rare disease called mast cell carcinoma syndrome and I get three pain pills a day that’s it tell me what am I supposed to do when are you guys going to make this better for us because our emotional health is suffering drastically and we can’t even take medication for emotional health anymore because it’s illegal to take something for anxiety and pain you have to choose between getting your pain treated or your anxiety treated what they don’t understand is undertreated pain brings anxiety tenfold please do something to help us Tennesseeians are dying

Gail Honadle

Patients prescribed controlled substances could run into delays getting medication
https://kristv.com/news/local-news/2019/06/11/patients-prescribed-controlled-substances-could-run-into-delays-getting-medication/

What is wrong with this photo, 1 a doc with a script pad in their hands, not done any more. 2 a smiling patient, Pain Patients don’t look happy, we hurt to much and are angry we can’t be treated. Except with SNAKE OIL.

My spine hurts, my ear, my head, all from the Degenerative spine. Got a Spine replacement because that is what it will take to fix it?

Having the FMS Attack from H. due to a Red Food Dye reaction from the Red in the gum material of my new lower Denture. I can Pin Point the day it began along with the Diarrhea and Nausea and a Burning Mouth like I’d eaten a Ghost Pepper that doesn’t go away until 30 mins after you take the denture out. NO test for the Polymers or Red Dye. I have had FMS 30+ yrs and Gastroparesis over a decade. I know the difference in the 2 attacks. GP is a ER trip always has been.

Rich Reifsnyder

Hi, I couldn’t have said it better myself then what you wrote Mary.God Bless All

Jennifer Clayborn

They need to start taking Rx opioids out of OD stats. Most of the OD’s seem to be heroin & fentanyl. If the DEA wants to resolve this crisis, that is what they should focus on, *not* Rx meds. Especially as they relate to chronic pain. We, CPP, are not the problem. And beyond just stopping the illicit drugs, there needs to be more resources for addiction treatment. Fewer addicts = fewer OD’s. If the average person like me can figure this out, why can’t these people??

Mary Wuestefeld

Vanilla Singh says that her message to pain patients who are suffering is “you always have to have hope” – There is no hope as long as the DEA is going after upstanding doctors who are prescribing legitimate pain meds to their suffering patients – this creates FEAR not HOPE. Hope will come when the DEA stops persecuting doctors treating pain patients and states reverse new laws that interfere with the proper treatment of severe, intractable pain. Only until pain patients start getting their very much needed medicines back at the proper doses can there be hope again.

I had hip surgery in late March 2019 was given 10 days worth pain meds no refills. Therapy was brutal & could not complete 60% of exercises due to hip pain & spinal stenosis, degenerative scoliosis, DDD, piriformis/ sciatica & other pain issues. Supposed to get other hip & shoulder surgery. I don’t think I can /want do it again. It didnt help w/pain & still level 9 pain w/o pain meds, not sleeping 4 hrs. Also have chronic migraines more than 15 days a month no medication helps but higher dose of opiates. I had got paranoid doctor after my clinic closed therefore I can’t get any even though I did nothing wrong never failed a urine test or counts. I had a neck injury yrs ago & surgery ,have problems with the brachial plexus. Too many issues to list. But back to the March surgery I got a rollbo call in mid April from my insurance company asking me if I’m taking my medication correctly to push 1 if no 2 if yes but it didn’t say what medication & I didn’t get this before the surgery it just happened after the surgery. Putting 2 & 2 together bc pain medication 4 surgery. Even though I’m not on any pain meds now. I still receive a robocall today mid June. What the? It also said taking medication is important & if you’re not taking your meds correctly or not taking meds at all you should talk to your doctor or call their nurse. Who gave them the right to be the angel on my shoulder! Who asked them to interfere between me & my doctor or surgeon? I think insurances are stepping out of their boundaries. I had to ask a second time to be removed off their robocalls that I didn’t appreciate their parenting that in today’s technology I have my cell ph set up to ring nor do I have any mental defects that prevents me from taking my meds appropriately. The harassment has got to stop ! Doctors, insurance, government, everyone bullying people in pain.

dave

“great insight” “had an effect on us”. LOL Not very convincing. Dr Singh was chosen to lead the PMTF as a cheerleader. No matter what the PMTF did or didnt do- she was instructed to claim how wonderful the PMTF truly is. In addition, I heard so many self congratulatory comments from the PMTF members. If i could pour what they said over my morning pancakes- id get type 2 diabetes- but im not that naive.
The NAS report on pain management-that was completed a few years ago- did most of the work for the PMTF when it came to reviewing research on pain management treatments for different conditions. Essentially the PMTF didnt come out with new ideas- and keep in mind that wasnt what they were called to do by Congress who never said the report would become mandatory for all providers to follow or face risk of fine or other penalty. So why develop guidelines that no provider is required to follow and that no patient can enforce? Its clear that the pmtf misleads the public into thinking care might in some way improve by the development of new guidelines that are unenforceable. Worse then that Singh- like Dr Mackey with the national pain strategy-wants people to promote the guidelines-because theyre unenforceable. Such foolishness.
The guidlines have no sophistication at all – they are an amalgamation of research on treatments for pain that lack coherentism or progressivism or adaptation to any individual. They epitomize the moral and mental laziness of government and experts on pain
When i challenged the president of a very large medical organization who spoke at one of the pmtf meetings she claimed i never heard her comments for she assumed if i did i would think she was wonderful and when i indicated how boilerplate her ideas were she couldnt accept i heard her speech. Such is the silliness of so called experts that were part of the pmtf.
Soon enough the govt and experts will come up with a new resume builder and more ways to waste tax payer hopes and revenues in pain.

Holly

Also Cindy Calhoun is 100% correct! We have the Damn DEA going after Dr’s using the PDMP to bust Pain Dr’s! Yet the illegal drugs keep pouring in and overdoses are going to keep rising. Unbelievable!

Holly

Cut back again today…yes…my life is ruined, waiting for ANYONE to hear us sinse these ridiculous guidelines came out. Slowly sucking the life out of so many of us due to the one medicine that helped us. Yes, depression is awful. What in the hell is wrong with these idiots??????

HI Ed, Thank you for this info and for keeping us updated. While we CP Warriors are very tired from increased suffering and poor treatment…we will continue to do our best to fight the fight. We are a big component in getting this to keep its’ momentum forging forward. With prayers and ‘hope’ for a better future on our behalf, Maureen M.

Hayden Hamby Jr.

I fear that the “opioid crisis” is more about the budget of this nation and NOT about truly attempting to stop or slow the OD casualties of this country. I read, daily. I write daily and have called my state reps AND the medical board but, they do not hear or worse, do not care. Our documentation, record, of use of opiate medication, successfully for years and or decades simply……..does not matter. I hope and pray that the people suffering now and our children will not have to live their lives in a nightmare that the CDC “guideline” and ensuing enforcement of said “guideline” by the DEA has caused. The “experts” who have the final say can NOT possibly imagine what life is like with pain off the scale 24/7. There is no doubt that our Creator will not let the corrupt get a “pass” on this issue. Life is at stake.

Jeanette French

I just want to say that it needs to be done now, not next summer, that is way to far off, patients are hurting now, tell someone in chronic pain to wait till next summer and they may not be here then. This is a very serious issue and it needs to be done now. Not next summer.

Talk is cheap. When are we going to see any real action, like give us back some of our meds? I’m tired of the pain that doesn’t need to be & I’m tired of spending money I don’t have on products & other stuff that in the end don’t work.
Like I said, talk is cheap. Being in chronic pain has turned us into suspected addicts & criminals. Disgusting.

Don’t buy it

For the chronic pain patient it’s not Opiate/Opioid pain medication that is the chief concern to the Nuevo-Nazi political system that strips away our constitutional right to life. No, the main concern is how fast they can eliminate the disabled United States Citizens draining the system.
What do you believe is more deadly, the never ending STRESS our bodies endure fighting pain or the possibility of dependency?
No Sleep
No Rest
Just Agony
Plenty of free radicals damaging every organ, tissue or cell structure. Stress B.B’s acting like gramma rays cracking the DNA helix, waiting for the inevitable outcome.
I used to be worried about the loss of my quality of life, but now I’m worried just about living period.
We occupy a country where 90% of the world’s Opium is produced. Is there only enough for the street addict, or maybe some can be given to those of us that need it to survive.
Continuous governmental prevarications! As if the CDC did not know what they were doing.
This is simply a slicker approach to the new genocide, but it’s still a death camp.

LYNDA LUTZ

I have commented many times on this subject, but I never have seen my comments on your site. Please advise. If I am doing something wrong, please tell me. I was so glad to read DR Singh’s opinions and thanking CPP for their input. It is good to know we are being heard. I am one of the lucky ones. I have a truly amazing pain doctor. It took me over 1 year to find him, but he has knowledge about everything. He is not a pushover by any means, but he will discuss any suggestions I might have. I thank everyone for the work you are doing. Please continue. We need you.

Barbara

I agree with Cindy. Nothing will change until the DEA is stopped. I have a great doctor who prescribes what I need. I have insurance that will pay for it. But my pharmacy(a small independently owned pharmacy) closed and my new pharmacy where our records were sent refuses to fill my prescription. They say the dose is too.high. They are not my doctor, do not know me or my situation. My Drs office sent them everything. The pain contract, urine test results, my diagnosis- all pertinent information- and they said the DEA is really cracking down. All the large chain pharmacies are doing this and the small ones are forced out of business. I have nowhere to get it filled. I am terrified. I would rather be dead then go back to pain 24/7. I even had an implanted morphine pump which was a nightmare. Biggest problem was urinary retention. My urologist said I couldn’t take the medicine intrathecally and so they took it out and gave me the meds orally. I’ve done really well for yrs until this”opioid hysteria”. We all know the DEA can’t stop the illicit drugs which are the real culprit so they go after Drs and patients. How many lives will be destroyed or lost till they get it right?

Jeff

I won’t be holding my breath we just have to see what if anything is listened to and applied.

Lori P

You “hear us”. Right. Did you “hear” the cries of pain and desperation of those who could hold on no longer and have taken their own lives? Do you “hear” those of us who have been treated like drug addicts and thrown to the street with no hope of help? Did you “hear us” time after time, story after story, when we said something needs to be done, we are not receiving adequate care? In many case we are receiving NO care because no doctor will.accept us as patients. Do you “hear” me when I cry from the pain and yet will not take the precious few opioids I have managed to squirrel away before my meds were denied me because it might get worse so I tell myself to ride it out. After these pills are gone there will not be any more unless I do something illegal to get them. Do I sound like a drug addict? My meds were cut off January 1, 2018. Almost a year and a half ago. But because I refuse to take them very often, I still have a decent amount on hand. If I were addicted I would have none left and be trying to find a fix. I followed all the rules, never missed an appointment, always had clean samples (urine and blood) but I still ended up with no meds. Every pain clinic in the state has banned me. Do you “hear” that? What exactly does you hearing us now do for us? I am still kn pain, still have no one who will prescribe anything for me. Hearing is nowhere near enough.

Gail Honadle

Our Doctors, ER’s, Hospitals, Pharmacies and Insurance companies DON’T HEAR US! I’m going through a Nightmare FMS FLARE that is the worse in 30+ yrs of having FMS. Valium can only control a tiny portion of that PAIN. But because I do take Valium I’m Not allowed any but a Post OP Pain Med at the lowest dose, 5 mg NORCO all I want is to be able to Move with out PAIN. Even sitting hurts.

I can’t prove what I’m reacting to, but can pin point the day. May 29, 2019, the day I got a Lower Denture. The Burning started with in seconds. I react to RED food DYE, the gum part is a deep Bubblegum Pink, Lots of RED DYE with a tad of white, My mouth is on fire ONLY when the denture is IN. Chronic nausea and diarrhea to boot. I get the same reaction from Seafood, RED gelatin, pop cycles. Those things I can avoid. A Denture is NOT something you can Avoid. 12 Million FMS patients I can’t be the only 1 who’s reacted to denture material. BURNING MOUTH is a dental issue but deals more with the Polymers used. NO Allergy test for either.

Gary Raymond

A national emergency should be declared for the pain crises sparked by the swift and premature action by the CDC 3 years ago. The opioid issue has been and will always be a part of criminal recreational use of any controlled substance.

Cindy Calhoun

Nothing is going to change until the DEA is called off!

Pamela Kay Russell

I’ve got to locate draft to read sounds promising Hope is a 4 letter word means to those left in the cold Nothing happened or is happening
I hope empathy is created in this Not continued shame and subjected to community harrassment dependi,g where living
I am hoping and I hate that word now I have suffered long enough my year and a half My cysts have gotten bigger again new ones resurfacing I’ve gained weight from taking OTC( I’m allergic too My neurological issues up neuropathy pain and collectiveness of many injuries including hands feet spine from ducts laying on organs veins arteries
My motivation gone cause of pain depression The stigma still here 1.5 year Into it. I will never get away from in this small town illlegally townsfolk knowing all our personal business somehow.
I gave up my BSN Nursing this year so tired of hope I was tired of hEach year no one hire me cuz of my health and my medical privacy act blown in the wind I had an interview a month ago needi,g employment in field I’m use to the DON of Nursing at end of interview said quote She just wants the pills I was furious Slander outright and backed
I am going downhill more each day and suffering and now tortured even if don’t have treatment In chronic pain I’ve had enough
Hope Tennessee gets ofc there high horse and that locals get on to true life directions for change for the kids in this story They have no real jobs just telemarketing or fast food There no factory jobs No drive ins no skate ins Parks run to the ground Church’s no longer let kids play on there basketball courts ECT ECT cuz they may be high How does that help
I have listened to such extreme in this Like 3 different doctors saying We don’t care if they die under a bridge We rather see that than give out opoids There trying to impress someone ??? Ok Hope draft has significant change to help those left with nothing but pain.

Marie Gafney

They hear us and do nothing.