Opinion: Medicare Considering Opioid Restrictions – Comment on Docket by Monday 3/5

Opinion: Medicare Considering Opioid Restrictions – Comment on Docket by Monday 3/5

By Valorie Hawk.

Most of us knew this had been coming; however, it doesn’t make it any easier to swallow.  This is probably one of the most important tasks you will be asked to do as a chronic pain patient or for pain patients.  We know there have been literally hundreds of ‘Calls to Action’ over the years, but this is it.  Medicare is considering limiting coverage for opioid dosages over 90 MME and putting a 3, 5, or 7-day cap on new prescriptions for acute pain.  There is a proposed 7-day supply to be provided while you seek an exemption to an over 90 MME prescription.  Medicare is also proposing adding extra flags for Gabapentin, Lyrica and Benzos in combination with opioids.  Final approval is given to your insurance carrier, not your doctor.  We must ask for a legacy exemption for those already stabilized above 90 MME.

We have until Monday to badger as many people as we can to comment on the federal docket.  Pain patients are now joining their State Pain Advocacy Groups, created several months ago for direct action and advocacy.  These groups are a little different than your typical advocacy groups, as they discourage personal stories, memes, medical talk and surgical photos.  We are focusing on the collective and not individual experiences, though they are the most important part of this.  We will comment on federal dockets, attend legislative hearings, talk with reporters/policy makers and even protest at the nationwide ‘Don’t Punish Pain’ rallies on April 7, 2018.

We must bombard Capitol Hill with calls, faxes, Tweets and emails and meet with them if we can.  Not only do we need to let them know how medically fragile and chronically ill we are, and that we depend on these medications for our very existence, but we have to PROVE to them we are not functioning addicts.  They must see us speaking as one, with clear speech and clear eyes.  We must be rational, calm, cool and collected – not an easy thing to be when you are fighting for your life along with daily fatigue, illness and disability.

Please comment on the federal docket that closes on Monday, March 5th, 2018.  Use these steps as a guide, but please do not copy them verbatim, as Medicare will disregard duplicate comments.  Join your state pain advocacy group – it’s your state name and ‘Pain Advocacy Group’ on Facebook – the website is under construction.  We will never ask for money from chronically ill pain patients, as most don’t have any to spare.  Ask how you can help in your state group, as there’s so much to be done.  We are just at the beginning of what we fear will be a very long battle.  It’s way past time for us to be advocating together – if we wait until our pain relief has been completely taken away, it could be nearly impossible to fight.  Please know that we are all just one appointment away from losing access to pain medication – whether it’s your doctor unwilling or unable to prescribe, your insurance denying coverage or your pharmacist being out of supply or refusing to fill.  It’s happening and it’s real.  Come join us – we need you now!

Here are some tips on how to comment on the federal regulations:

  1. https://www.regulations.gov/document?D=CMS-2017-0163-0007
  2. Click Blue Box ‘COMMENT NOW’
  3. You may want to write your comment in a document and then copy/paste in case the site glitches or it’s too long and you need to attach it as a doc – ‘Choose files’ – if you need to upload it.
  4. Name/City/Sate/Zip/Country/email or submitting on behalf of 3rd party – we can submit your comment anon for you/CONTINUE.
  5. I am a Medicare/Medicaid patient or future patient – or have a private insurer which often follows Medicare policies.
  6. I am a pain patient diagnosed with (diagnosis) for (how many?) years. I tried( ______ ) – list all the non-opioids (n-saids, Tricyclic anti-depressants, SSRIs, SNRIs, Steroids, anti-epileptics, etc.) you tried BEFORE opioids and include all the different therapies/treatment/surgeries (i.e., PT, OT, Aqua T, Chiro, Osteo, injections, devices, procedures, CBT/mindfulness, acupuncture, acupressure, massage, biofeedback, Medical Cannabis, creams, TENs, MENS, natural remedies, etc.) but they all failed to heal/help or adequately control my pain, so I require opioid pain medications. Opioids help me by managing my pain and (_____) – talk about improved function that opioids help with – working, chores, childcare, travel, entertainment, etc.
  7. If Medicare/Medicaid/private insurer refuses to pay and if I do not have access to my medication over 90 MME/any dosage I will (____) – explain how your life will change – lose your job, income, home, car, entertainment, not be able to care for family/house, etc.
  8. Explain you have been a model, compliant patient, and if you have a pain contract – include how often you have UAs, pill counts, secure you medications and if you use one pharmacy, avoid alcohol, cannabis, etc. Mention it is unlikely your condition will improve and the effects of time and aging will make things worse. Opioids and pain management were a last resort option.
  9. Proposed policies are not supported by proven studies, everyone genetically metabolizes medications differently, the CDC guidelines were written outside the rules by non-pain management physicians, some who may have professionally or personally profited from the outcome.
  10. These policies could: create more chronic pain by not treating acute pain, scare more doctors out of pain treatment, create more demand for urgent care, increase the rate of expensive and possibly dangerous procedures, more disability claims/unemployment, and need for social services.
  11. Force involuntary tapers, withdrawals, risk of suicide, high blood pressure, stroke risk, and cardiac issues.
  12. I am disabled, NOT over 65 and pain medication helps me PREVENT falls by stabilizing my pain.
  13. My medical care and decision making should be left to my doctor, who understands my complicated and complex case, not CMS/Medicare.
  14. A 7-day supply while seeking an exemption to 90MME would cause extreme stress, paperwork burden for my doctor, extra copays at pharmacy/doctor, plus another trip to doctor/pharmacy when you are in pain.
  15. A 7-day limit on prescriptions for new patients would be a physical and financial hardship – doesn’t take into account injury, size, metabolizing, genetics or other factors.
  16. I take _____ (Benzos, Gabapentin, Lyrica) safely – I do not mix them with alcohol, other substances and use as directed.  Explain what might happen if these were to be discontinued.
  17. Prescribing has been going down for over 5 years while ODs to illicit heroin/Fentanyl coming in from Mexico/China is skyrocketing – deaths will continue to rise, as this crisis is NOT an over prescribing issue.

Valorie Hawk lives in Washington and has experience working with Congress. She can be reached by Email: C-50painadvocacygroups@outlook.com and you can follow her on Twitter   @C50painadvocacy

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Authored by: Valorie Hawk

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43 Comments on "Opinion: Medicare Considering Opioid Restrictions – Comment on Docket by Monday 3/5"

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Janice I’ve been thru all that twenty yrs ago. After three back surgeries and a fusion I got with a PM doctor who put me on meds that made it possible to work another 18 yrs. My advice to ppl now is don’t have back surgery if you can avoid it. Only makes it worse and you end up with a ton of scar tissue. And you’re not going to be able to get pain treatment much longer. Been to hell and back a few times over. Now my meds are cut in half. And I’ve got advice for ppl in this same situation… Try to wean down to even less bc I’m told PM clinics/docs are going to start closing right and left after July 1. That’s D Day, the day docs must be in full compliance. The DEA agents are foaming at the mouth waiting to attach chains and locks. It’s insanity but it’s going to go from bad to worse. I can count the times on two hands I’ve been to a liquor store my whole life. But I found after my meds were cut that tequila helps! I’m drinking a half gallon a week of good quality tequila now. So on top of all the problems and pains that came with my injury I’m going to have to become an alcoholic now. The day is probably coming too when I’m going to look for some of the illegal fentanyl I keep reading about. The next step is death, either from the street drugs I find, or from “snubby” (my dad’s old .38).

I’ve been looking for something just like this!! Unfortunately too late for the docket. But I’m mad as hell. Hurting non stop. Being sent to pain management bc of the regulations our government is putting on our GP’s. The government needs to be seen as being concerned about addicts who are dying left and right from this so called opiod crisis. And it’s not!!! They want to force ppl to methadone clinics and then get those ppl addicted to methadone and then there are clinics for getting them off of the methadone and I was too mad to research that much more
So I don’t know what that treatment is but it sure doesn’t make any sense to me to treat heroin addiction with an addictive opiate. . But it’s happening. And who makes $$$ from it all?? Big Pharma!!
And government are buddies with them bc of control and money that’s involved. That’s fine but leave us chronic sufferers alone!!! Recently, I have new area of pain in my back and MRI results was a long list of problems in addition to the problems in my lower back that I’ve been suffering with for over 30 years. I’ve tried everything from A-Z for relief. For the past 2-3 months, I’ve been barely functioning. Spending time laying down and having difficulty doing easy tasks… before I could push through and get things done and then pay for it for a few days. But this pain is different, it’s stopping me from even trying…
Too painful. Been on Vicodin 10’s for years they don’t help much but take the edge off but I’m needing some strong pain meds and with all the different treatments that I’ve tried in my life, if my new pain management Dr mentions physical therapy, my head’s gonna explode. They all want to start there… I’m way past that. The reason I mentioned it was because his receptionist asked how I felt about physical therapy when she called for the appointment. Plus if he can look at my records and MRI’S and not get serious, I’m in the wrong place and I’ll keep fighting but I know the struggle. Been trying to get my GP to give me something a little stronger but she couldn’t. I refuse to sit down and suffer like this for the rest of my life…I’ve just been looking for the place to complain to. And don’t even get me started on chronic migraine. I’m so sick of going to the ER paying $100 copay, to be treated like a drug addict looking for a high. I’ve been escorted out before. But that makes you look worse. My last trip was new year’s Eve after a 5 day migraine.no relief . Once I said Dilaudid.

This is awful some of us.have chronic pain,fibromyalgia,bad back born with a birth defect did not know until I sprung my back,been hit by a car more then once,surgery want help.Last year in the Hospital fell hit my back low toilet ask them for a high rise seat,told them about the fall hurting my bac went unnoticed .A lot of pain,the problems is not my cause,it happen.The only relief some can get now you want to take away.Is this how Our Father say humans are to be treated,we are not abusing pain medicine ,what about people going into surgery what do they do,cancer patient,I take blood thinner so what do I take that do not cause bleeding,I am already at risk for taking them.

I am a 62 yo RN. Never drank, smoked a joint. Don’t social drink. Never wanted to. Was rear ended after work by a young woman looking in her rear view mirror. Had 2 big babies natural should have been CS. Then I had bilateral Pudendal Nerves double trapped.
After over a dozen ortho and pelvic surgeries in 2013 I was forced to give up my job I loved and succumbed to pain management. I have averaged a surgery per year for past 14 years. I had 3 in past 14 months. My last was emergency for small bowel obstruction.
In the ER writhing in pain i didn’t understand why they were not giving me more pain meds. I had worked there briefly years ago. I heard the doctor ask, “ Are you out of your meds?” What???
The vomiting was continuous. After CT and small bowel obstruction diagnosis they gave me more pain meds and ER doc was kind, even apologetic.
I had surgery next am. Surgeon said I dodged a big bullet. Went home Thur pm after a week in hospital WITH NO APPROPRIATE POST OP
I asked for Patient Advocate. Just got name of hospital attorney.
Saw my pelvic pain doc today. He was furious that I was sent home after open Laparotomy with Nucynta and Hydrocodone 5 which is my maintenance meds. Had I been able to fill them, he couldn’t have given me my usual meds.
Nucynta had been unavailable since Dec.
I was told there was a Dilaudid and Fentanyl shortage in hospital. So I took my home meds.
The addicts get free Narcan and drug rehab. PEOPLE who have severe painful conditions get less and less. Every visit to my pain doctor there is a new regulation to reduce what he can prescribe.
Sick people are suffering while addicts still have plenty. Our politicians and doctors sip their cocktails and snort their coke at parties.
30% of Americans have some type painful condition. We are sick and weak and often broke. But we can write and vote. Time to unite!
I helped turn Alabama into a Republican stronghold. Things must change! Drug addicts are too stoned to vote.
I will not tolerate the “War on PEOPLE With Severe Chronic Conditions”!
My 1st goal is to become educated. My short term goal is to meet with the hospital attorney about delay of care, inappropriate post op pain meds, and being DISCRIMINATED against because of chronic health problems.
I put up a fuss at discharge about this and I’m not finished with this discussion.
WE are not the criminals and I refuse to be treated like one!
Hospitals and doctors exist to heal!

it would be helpful to know which part of the regulation actually deals with the opioid limits. It is a 208 page regulation and so far all I can find is info about reimbursement, how medicare pays for different diseases, actuarial columns etc. It would be best to actually state which portion of the regulation we’re speaking to (I know my fault for not looking sooner)…..

There must be a lot of $$ involved behind the scenes, that’s the only thing that motivates so many agencies and individuals to pursue this so fervently. I’d love to know the real reason for all this hoop-la, I can’t believe anyone is really concerned for the addicts, if they were why not take on the tobacco industry and ETOH abuse? No one would dare to suggest that smokers and alcoholics be prevented from feeding their habits, they have the “right” to kill themselves (and others) and don’t even need a prescription, just buy the stuff in the grocery store or pharmacy.

And all across the land heroin traffickers smiled.Those investments in Congress really paid off.

Thanks for posting this information, Valorie Hawk very solid info and article,the best to all as this fight continues.

Hi, I am new to this blog.Will our comments here help or is there somewhere else on this site I need to comment to make a difference and change for pain sufferers?
I suffer from quite a few health conditions that cause me pain and unless I break a bone I am afraid to ask for non otc pain meds which hurt my stomach and UC colitis..Right now I have tramadol which doesn’t touch my pain..I have heard other pain sufferers talk of suicide or have sadly done it..I too fear a life of pain and yeah suicide has crossed my mind..I know many people that are not misusing pain meds but making their lives tolerable and giving them a better quality of life.I would like a life free from my pain as I have to spend a great deal of my life in bed due to the pain of walking and even standing along with extreme fatigue .Non sufferers don’t get it! As adults I think it’s ridiculous we have to beg for pain care that we would like to choose meanwhile the ones deciding for us like we are children sit back downing their legal cocktails of choice..Actually i am afraid to leave a comment in this crazy environment of intolerance for pain sufferers. Good luck to us all!! We are stronger in numbers and need our voices heard!

I have been on pain meds for about 10 years for a serious back injury and a rare disease called Ledder Hose in the arches of both my feet, I take all my meds just like the Dr,Alex Stone she work with lynx pain manament in Kennewick Wa, I have had 2 surgery’s my siatic nerve lower 4/5 verdabrae and I have 8 screws and a plate in my neck. they have me on these meds so I can walk or I don’t get out of bed, I have to take my paper work for Tramadol/morphine to the pharmacy every month, that’s the rules and I have to carry the shot in case I possably over dose, thats what my doctor says,, I follow all the rules of taking my medication as the bottles sayI added it all up one day and I take 1700 mg everyday morning / night I have never overdosed because I follow the rules giving to me. the people that die are not ding what they are told and that’s not my fault or anyone elses, so that’s all I have to say for now, I hope this makes the docket so we don’t get screwed ,.,

It is ridiculous to make older adults, dependent, and the disabled suffer. The new legislation = torture.

Sheryl Cohen-alexander

Your story is so similar to mine except I’ve been on them 28 yrs. I was force weaned. I do have medical cannabis, otherwise I think I would have died from a stroke or heart attack because my BP was so high. I was discharged and given a month supply after my dr retired. I got a letter saying his associate would treat me. He discharged me by way of certified letter after seeing me once. We have all been sentenced to hell. It’s bad enough we have to live this hell that the Dr’s and government are killing us. I don’t want to be congratulated I got off them. I want to sue them for cruel and I humane treatment. I’ve lost count of the number of Drs I tried to see afterbmy new pain Dr left the specialty after 6 months with him. 20 calls-no Dr. I ended up in acute fentanyl withdrawal when an old patch failed. So I spent my last week of withdrawal in a psych unit at Yale for anxiety. A symptom of opiate withdrawal. 8 days in hell and now 2 months later I’m in still in my bed for all those who thought it was the opioids keeping me there. It was the untreated Lyme because a test with 70% false negatives was required to get treatment. Now it’s in my brain, my joints, my eyes and my blood and liver. The only thing I am off opoids is more alert to my pain and more depressed. The drugs they want to give me will attack my blood disease and leaving me at risk for a fatal bleed. Other drugs are triggering episodes of my dystonia (movement disorder) and no it wasn’t the opoids that caused it. It was all the psych meds and Reglan given off label and causing tardive dyskinesia. Mother Earth gave us the Turkish poppy for a reason. The same applies to the cannabis plant. Together I was able to have periods of no pain. They said i didn’t need as much opoids then. This has turned into utter madness. Pain mgt Dr’s are leaving the practice or closing their doors except for shot givers. Which of my 7 cervical, 1 thoracic and 4 lumbar discs will you inject first. Oh wait, I have low platelets. You’ll give me a subdued hematoma. The future is grim for pain. Maybe you want us to die.

People who suffer from chronic pain need their medication!!! We are not able to function and live our lives without relief. The emphasis should be on preventing addiction not taking away existing patients medication. pain need their medication!!! We are not able to function and live our lives with out relief. The emphasis should be on preventing addiction not taking away existing patients medication.

We chronic pain sufferers need to stop this. How ridiculous is it that we can’t get checked by our doctors to get the proper medicine we need to ease our pain. This is personal between the doctor and ourselves. They are taking our rights away because of the people doing drugs and it is coming from the streets and thehbsree bringing herion over from other countries. Stop blaming the doctors. I suffer everyday 24/7 and if I didnt have my pain meds I thank God, my doctor and my ibsurance for I wouldn’t be able to see my grandbaby, get out of bed and have somewhat of a normal life. If they put this bill into action their will be more suicide deaths from chronic pain sufferers. I don’t want to die so why would I be so stupid enough to take a whole bottle of pills, even half, or 10 at a time. Just because there are stupid people out there that do this doesn’t mean we should be punished for their actions. I want to live a long life to see my children get married and grow old with them. We have to do something to stop this, does anyone have any ideas?

Good gawd!! When a bandwagon rolls past, some government agencies just can’t resist jumping right onto it, can they? I sent in my input, but I’m guessing Those In Charge have already made up their minds and won’t even bother to look at what we have to say. The Garden Gnome (Jeff Sessions) has already rendered his opinion (“Take a couple aspirin and tough it out”), so that’s that.
Chronic pain is so far beyond what those with healthy bodies can conceive of that all they understand about opioids is the archetype of the depraved addict lurking in the shadows.
No, wait… it’s the ghost of Harry Anslinger, in a spitting rage over legalization of the Killer Weed!
If it was possible to slap a curse on someone, I’d love to be the one who gave the gift that keeps on giving: a lifetime of severe chronic pain that responds only to opioids! And I’d make sure to inflict it on the people who believe chronic pain patients are “weaklings” who only take opioids for the lovely euphoria they bring.
Who knew — besides us — that feeling normal could be compared to “euphoria”?

I can’t believe that so many people fought for our rights and now the government is taking away the rights that many people lost there life’s for. Opioids should be between a trained, Pain Dr and the patient. We Veterans and chronic pain patients didn’t ask to be in pain 24/7. If opioids are helping us to be able to have a better quality of life then PLEASE leave is alone. Most of us are already down on ourselves because we get treated as though we shouldn’t hurt but the truth is we do.

Well said @Donna McLeellan I couldn’t agree more if we don’t use our voices in the right places we will not be heard. Just complaining about it won’t help we must use our voices to get the care we deserve.

This whole so-called “war on opiates” is infuriating, especially for those of us with chronic pain who depend on opiates to better our quality of life. And nowadays it’s not just affecting those with chronic pain, but acute pain episodes as well. I’ve heard horror stories where someone goes to the ER with a broken bone and were told to take Ibuprofen… that the doctor refused to prescribe even a few opiates which of course would’ve only been taken for a few days – but desperately needed. The physician refused. I’m sorry, but that’s just insane! In any event, more often than not, I’m hearing of chronic pain patients who were able to get by with opiates but are either taken off them completely or given a reduced amount… all because of these new regulations. It leaves patients with nowhere to turn, which is completely unacceptable.

sandy auriene sullivan

Done. I explained why these 3 meds are found together; and that as patients suffering in pain – we may not be traditionally terminal but we still die younger and it’s still from our illnesses relating to pain. Thus our natural deaths are not overdoses. Also how these help and how they would hurt – more than currently due to changes in prescribing – if access was denied thru my federal disability and that new patients will use state medical/medicaid before accessing federal medicare. Denial/further restrictions of these medications would make our lives unbearable.

Just in a lot more words. 😉

I don’t know of a single government official who has seen my MRIs, watched me suffer through numerous spinal fusions, or followed me around to witness my pain every single day of my life. How dare you legislate and JUDGE the one thing, meds, that give me a few hours of relief. Do not lump me or others like me into heroun overdose statistics!! Its not the sane!!

I am not ashamed to be chronically ill with rare and painful diseases; but the “powers that be,” are trying to shame us and put us into what is now a minority group of people who abuse opioid medications. Does society as a whole have a drug problem? Yes…but taking medications away from those who obtain prescription medications legally and use those as prescribed to manage very real and debilitating pain are NOT the problem.
Making medications proven to help the chronically and terminally ill unobtainable will not stop the drug epidemic anymore than prohibition stopped alcoholism, or taking certain cold medicines off the shelf stopped the production, sale, & use of meth in our communities.
I have a voice…..I have the right to use my voice and I will to defend my quality of life and the care of those who fear speaking up or are unable to speak for themselves.
This infuriates me and scares me both.

The proposal to limit opioids at the hands of insurance companies is another example of how We The People are losing our rights to the mighty dollar and undereducated powers. God help us!

I have been pushing this hard for months, but am ramping it up today. I will be more pushy than usual in MY groups, if I have to bully people into it, I will. I have people saying “Will it do any good?” Well it will not do any good to do NOTHING either! So, I am working on this for the entire day and push push push! Some people think it is only an opiate thing, and it is not. Now they want to flag Gabapentin, Lyrica, and benzos. This affects a lot more than just pain patients now.

No one has a right under constitution to say who has pain or who don’t without medical records x-rays MRI or any other this is not right these junkie die at there own risk the drugs, drinking start in home or hanging in gangs other citizen has controlled over this its only people’s trying to sue someone on there failures and that all some depend on medication I will sue the government .They need to clean up there life and stay out of other people a junkie a junkie parents promble not American citizen. ..

This is just insane! Why can’t we find an Attorney to stop this? I will happily donate some money every month to an Attorney or Attorneys who will take this on! This is not right everybody’s medical situation is different! You cannot make one ruling for the whole country it is Unthinkable! What their doing it is just Criminal. They need to separate the illegal use of any kind of drugs to the legal use. The ones who comply who go to pain doctors who are monitored in a proper way and who have the doctor’s review their situation and discuss with a patient what’s best for them are what’s right. People that are making these comments have never had Medical conditions that are significant enough to know what is needed for them. The people that are making these decisions are not educated you know when your body has been damaged beyond repair for one reason or another and it is no longer that healthy body you were born with then medically you are going to have pain and there’s no getting around it. To try to take everything away from patients is just cruel there has to be some compromise there has to be a separation between illegal drug use and legal drug use. God help us all!

Here are my comments on this Medicare BS… focused on the discriminating on a the protected class of chronic pain.. covered by Americans with Disability and Civil Rights Act
Since both those people with additive personality disorder (APD) and those with intractable chronic pain (ICP) are a protected class under the American with Disability Act (ADA) and the Civil Rights Act (CRA)… the exclusion of those with ADP from any daily limits and imposing daily limits on those with ICP. Would strongly suggest that these proposed limitations are in violation of ADA and CRA.
Likewise drawing a distinction between pain associated with cancer deserves some preferential treatment than pain associated with any other physical disorder once again suggests a violation of the protected class under the ADA and CRA for those diagnosed with ICP.
Placing daily MME limits without regards to the pt’s CYP-450 opiate metabolism is further discrimination for a subset of the protected class.
There is no known clinical trials that these conversion tables have degree of certainty making a conversion from one opiate to another.
Here are warning/advisories from one such set of conversion tables: http://www.globalrph.com/narcotic.cgi

* Published equianalgesic ratios are considered crude estimates at best and therefore it is imperative that careful consideration is given to individualizing the dose of the selected opioid. Dosage titration of the new opioid should be completed slowly and with frequent monitoring.

*Factors that must be addressed during the conversion process include: Age of the patient or presence of coexisting conditions. Use additional caution with elderly patients (65 years and older), and in patients with liver, renal, or pulmonary disease.

* Conversion ratios in many equianalgesic dosing tables do not apply to repeated doses of opioids.

* The amount of residual drug in the patient’s system must be accounted for. Example: fentanyl will continue to be released from the skin 12 to 36 hours after removal of the patch. Residual effects from discontinued long-acting formulations should also be assessed before converting a patient to a new opioid.

* The use of high but ineffective doses of a previous opioid may result in overestimation of the converted opioid.

I sent my plea , and I also included my warrior friends who are all fighting this fight , which we should never have to go through , God bless , I hope we win this awful battle ❣️🎗️

Thanks 4 letting us know about this. I wrote in & I hope everyone esle does. I am truly amazed this is even happening. True sympathy & understanding comes from suffering the same affliction . Until the people pushing these guidelines r put in our health situation & pain they truly have no idea how much harm they r causing.

I am a 22 year pain patient due to a drs mistake in a surgery. Now the government wants to take away the only thing that allows me to survive!! I have tried every expensive Interventional Pain Procedure known. I have spent over $150,000+ of my own money on out of pocket procedures that were suppose to get me out of pain. Well 21 surgeries later and I still have 2 implanted stimulators one in my spine and one in my right leg and the only thing that helps is my pain medicine. I do not consider myself (nor do my doctors) an addict but a dependant on a medication that allows me to live. Just like a heart medicine or insulin for a diabetic. This should be between my dr and me not my insurance company. The only thing taking away people medication will do is create more people out on the street looking for drugs it certainly won’t help the issue. I like most patients have never and would never sell their medications nor do they ask for early refills or missing prescriptions. It is sad that our government is fighting such an abused portion of our population (the chronic pain suffers). They should be using their energy to helps us find new ways to live better lives not try to put us in early graves. I am a tax paying 58 year old woman who had to give up a luctrative career due to no fault of my own and live a horrible life of disabling pain. We need to fight!!


I’m so upset over this. I live near the boarder and there’s so much crime from the Cartels. They are the ones causing this “Crisis” not compliant Pain patients. It’s a disgrace because we are an easier group to target than the real bad guys, the Cartels

I have private insurance I have a visible broken bone after for our placements with a rod in it that can’t be operated on by one of the best doctors in the country I’ve been to five different pain management doctors I know what works for me it’s for pills a day that I take just so I can get out of bed and function the pain is so excruciating why can’t I find a doctor I’ve no problem with the pharmacy no problem with insurance?? I have no more Hope

We don’t abuse our meds we need them for some quality of life. I wish all pain patients aren’t junkies and use our meds as prescribed. I hope Medicare gets ready for alot of home health care cause if my pain meds are taken then I’m dead sooner than planed because I’m terminal so let me enjoy the time I do have. Our bodies have changed and alot of us need our pain meds just to have a life and it’s not fair to take or limit our pain meds that’s up to our Dr. To decide. Medicare leave us alone!

What the hell am I going to do when I retire ?

Thanks for sending this out, I’ve already wrote three or four notes to this docket. I find this to be Criminal what these people are doing. This is exactly what happens when you let PROP and Kolostomybag write recommendations for pain patients these are psychiatrists and addiction specialists that are anti opiate zealots with an agenda. They’re not going to rest until we have no pain doctors and all pain patients are dead. I was laying in my deathbed when I first started taking opiates, I was able to get out of that bed and was actually looking for a part-time job, then the forced tapering started, now I’m not as bad as I was when I first started but I’m right back in that deathbed about 90 to 95% of every day. I’d like them to answer one question. How has this been good for me. You can’t spend 90% of your life stressed out thinking about suicide. I’ll spend the rest of the weekend trying to get people to comment on the FDA website, however I’m finding a lot of people that are scared to even comment, they’re afraid they’re going to come after them or something.
Thank you for trying to help us.

Okay Great! Another giant hoop we must leap through. One I was really hoping to avoid. I want to say thank you to Vicky Grant for bringing this issue to the forefront. Eyes are opened. We don’t have much time everybody. Muster all our strengths together. We cannot have this much government intrusion into our lives. Let’s do this, strap in, get ready for take-off. Let the powers that be know that we matter. We must have our medication(s) so we have semblance of life. This is real people! We all have homework to do this weekend. Let’s get busy and don’t be late!

I just sent my comment to be added to the docket! You should too. I was a Registered Nurse for 30+ years before my career was cut short by a variety of diagnoses and thusly, surgeries that affected my ability to walk. I can’t function without opioid medication. I hope what I wrote will help!

Thank you Ed, thank you for publishing my opinion article. We appreciate all you do for helping spread the terrifying plight of pain patients. This Medicare issue is critical, I just wish we were farther along in our advocacy efforts to be able to spread this dire news to current and future Medicare recipients. As we’ve seen from the past, private insurers will follow federal policies, as well.

Email: C-50painadvocacygroups@outlook.com
Twitter @C50painadvocacy

C-50/Coalition of 50 State Pain Advocacy Groups https://www.facebook.com/C50Advocacy/

Website(s) under construction: http://www.c-50.org/http://www.c-50.com

Nationwide Don’t Punish Pain rallies April 7, 2018 https://www.facebook.com/groups/982163208603921/

Please pass this on: I have been treated with opiates for 10 plus years after trying so many other things. It is the only way I get out of bed in the morning. I was able to work and pay my bills until my doctor starting cutting my meds.out of fear for his license. Yes, he admits I need them and he’s so sorry but the bottom line is that he won’t take a chance. I am not currently on Medicare/caid but I will be soon because I can’t work enough to pay my bills. I don’t want to be as I am only 61 years old, I like to work, I want to work, I don’t want to be a burden on the government but they are forcing me by playing doctor with all these stupid guidelines. PLEASE GET OUT OF THE DOCTOR/PATIENT relationship and leave us the ability to live, spend time with our grandchildren, do our grocery shopping, go to work, go to church, just generally have some quality of life.

My father will be 80 in August and has overcome cancer, a broke back, 2 heart attacks, and multiple injuries from work. Now at his age his body is in constant pain. His doctor cut his medications at his last visit without warning or even weaning him down.
This is not only unethical but also dangerous especially at his age and the shape he is in. Now he has developed a heart condition. I do not know if it is due to lack of medications now or just because of his health.
He is also on Medicare. Patients his age and in his health need these MEDICATIONS!
How can we as a society allow thousands of patients to suffer needlessly?? I will NEVER understand this cruelty!

Both my wife and I left comments and I noticed that unlike the previous changes which were slipped in under the awareness of most pain patients, most of the current comments are made by chronic pain patients. Let’s hope that our comments are not ignored like last time.

I have been a Medicare patient suffering from Peripheral Neuropathy and a number of other ailments for over a decade. After having tried every other option available to me short of amputating limbs, I am finally able to function to some extent on what some might consider a large dose of OxyContin. For more than ten years, I have always followed the rules. I have taken only the dose prescribed by my doctor. I have never asked for an early refill, or had my meds lost or stolen. I have never had any interaction with Law Enforcement that had anything to do with my medication.
It is currently very difficult to fill the prescriptions I have for opiates. I often make several trips to the pharmacy, because they are not allowed to keep enough of my medication to always fill it when due. If they don’t fill it, I suffer horrible withdrawal. If they fill a partial script, then I have to go back to my doctor to explain why he has to do extra paperwork and write more scripts to make up for what the pharmacy didn’t have available. I have to go back to my insurance carrier and get waivers to approve a second prescription in a month. It costs me money. It costs my doctor money. It costs the insurance carrier money. And it costs the govenment money.
The current wave of hysteria has caused my doctor to reduce my dosage somewhat already, entirely out of fear. From this experience I can say that if I lose access to the opioids that I have safely and responsibly taken for a decade, I will have two choices: I can find an illegal source to relieve my pain, or I can commit suicide. There is no third option. I cannot live a life filled with torture. In contemplating the likelihood that it will become impossible to treat my pain — because of shortsighted legislation such as this — I have begun to put my affairs in order at age 57.
I can tell you that I am not alone. More of this type of regulation, regardless of whatever misguided good intent is behind it, will have the exact opposite effect than what is intended. Law abiding patients will have no choice but to turn to illegal drugs, increasing the amount of thefts, diversion, and other criminal activity. That is, of course, only the patients who don’t commit suicide. There will be many.
(There is one more paragraph, but no space here to share it)

Thank you, thank you, thank you! Your article although late is right on. But I have to ask you how could we have known this was coming? If we had known it was coming we would have stocked up a lifetime of whatever we are taking. Sadly, that is the rare circumstance. As for depression, we are no more depressed then someone who has to die unnecessarily and in such a gruesome manner. This is no different then taking away a diabetics insulin! I just feel sick to my stomach when I think of all of these people to die these excruciating death.

“DO NOT PUNISH PAIN”? I am up at 3:15 a.m. unable to sleep because of the pain of the medication reductions. I’m so scared I feel like deer in headlights. The severe pain pain patient will be gone in 2 months. That is not an exaggeration. The sign should say “DO NOT KILL THE PAIN PATIENT”!!!!! Have you ever heard of depopulation? It appears that they are beginning with the pain patient! My guess is that the chronic pain patient will be bedridden and yelling out curse words soon. How can I participate. I’m afraid they’ve won and we sadly disappear. I don’t believe any of my comments are melodramatic. It is what it is!