Why the National Pain Strategy Won’t Help California Pain Patients

Why the National Pain Strategy Won’t Help California Pain Patients

Editor’s Note: I met Peggy through the National Pain Report Facebook page. I thought she was overstating her opposition to attempts to create a California pain policy. We spoke on the phone and I said, “if you feel that strongly about it, write a counterpoint. The California woman did. So we are publishing it.

As a chronic pain patient for the past 30 years, I was skeptical but hopeful that the National Pain Strategy (NPS) would provide relief for California’s pain patients who have suffered tremendously over the last three years due to the force-tapering or abrupt discontinuation of their pain medication initiated not as a result of abuse or lack of response but due to providers fearing license revocation and/or prosecution by the MBC* and DEA** for “overprescribing”.

As I read through the NPS, I noticed a very clear bias against the prescribing of scheduled pain medication for those with chronic pain. While they talk about their Integrative Health model and state that it includes “responsible and reasonable use of opioids for individuals who can’t be helped by other modalities”, there is nothing that defines what is “responsible and reasonable”. Moreover, there are no protections included to allow providers to prescribe at therapeutic dosages without fear of retribution.

The presentation at the Capitol on August 14th, 2019 confirmed my fears when Dr. Hameed’s presentation stated “No New Chronic Pain Opioid Starts” while legacy patients (patients treated with opioids prior to 2016) are limited to 50MME. It left me confused and wondering why the For-Grace organization would support an opioid biased policy that will not restore pain medication for those who so desperately need it to function.

There is frustration among pain patients because there still seems to be an underlying belief among policy makers that if non-pharmacological treatment is more accessible and physicians are more educated, or patients receive more education, CBT***, etc., we won’t need the pain medication. This premise is embodied into the NPS and is patently false.

There is plenty of access to all therapies except opioids. Insurance might not cover it, but doctors have no problem prescribing anything BUT opioids. Pain medication is the only medical treatment we cannot obtain legally by paying with cash.

Some people think pain patients are too focused on opioids therefore we must be addicted. People need to realize that many pain patients paid out-of-pocket and have already tried and failed all the non-pharmacologic therapy BEFORE trying opioids. This was mandated then just like it is today. We tried desperately without success to find a non-pharmacological solution that would control our pain and allow us to function. So yes, we are focused on pain medication. Not because we don’t believe in other therapies or because we’re addicted but because we have no alternatives and are literally dropping dead without them.

One must realize that severe, intractable pain can and does kill. The body cannot take severe, intractable pain 24/7. It attacks the body and results in medical collapse and often, sudden death. So if we want to live, we must have appropriate access to pain medication. Without it, we are being sentenced to a torture and likely to an early death. We absolutely are not saying that non-pharmacological therapies don’t work and shouldn’t be used. We’re saying specifically, they didn’t work for us and we have no alternatives.

So what is different in the NPS? Not much from the patient perspective. There will be an attempt to promote compassionate treatment and respect for pain patients. It seeks to provide extensive education so my guess is they will try to embody compassionate care through education. However, with a model that is biased against pain medication in a society constantly fed biased, misinformation about pain medication by policy makers and the media, I’d say the chances of successfully transforming attitudes toward pain patients are close to zero.

The NPS primary focus appears to be largely about gathering data. It’s seems to be one large clinical trial without the informed consent requirement. Much good can come from this data if patient privacy is fully respected but, unfortunately, the pain patients of today will be dead by the time the data has been collected and studied. We’re dying. We do not have time to wait for the research to help us. We need help immediately.

Pain patients cannot afford to endorse any more pain management or opioid policies until legal protections and assurances are put in place so providers can prescribe therapeutic dosages of pain medication without fear of retribution. Without these protections, nothing will change for those with severe intractable pain who are suffering and on death’s door.

I would encourage the For-Grace organization and those supporting the NPS to consider the arguments I have made and pull their support if these issues are not remediated.


*Medical Board of California

**Drug Enforcement Agency

***Cognitive Behavioral Therapy

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Authored by: Peggy Hillman

Peggy Hillman is a former broadcast operations technician now advocating for the rights of those who live with chronic painful illness to be treated humanely. A California native, she has battled chronic painful disease for more than 30 years. She hopes to change the false narrative driving current pain management policies and urge lawmakers to implement policies that will save lives rather than destroy them.

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Barbara H

Not everyone is stable enough to go to Washington. But how can we get all the CPP and anyone willing to stand and fight for our justice to join together in their towns all over the country on the same date and time along the roads in wheelchairs, walkers, canes etc to say we are many and we are not going to let them just kill us off. The only way we are going to get attention from government is to be in their face and stand together. We have to do this now. No disability advocates are getting anywhere. Constitutional laws are being broken noone cares not anywhere. We can’t even find a lawyer willing to do a class action lawsuit. Our rights are taken away are we 100 million going to let them kill us off. Lets join together and show them we want answers now. If anyone thinks they can help tweet and social media the [edit] out of this and lets show government we will not just die off like they want

Sam

Our votes and the votes of our family and friends on a state level is a start.these doctors know they will still get our money even if they dont give us the meds we need. Thats another problem. Stem cell thearpy might help is im not sure but im gonna try it. Im hoping it will help me enough to help others

Jack

We as pain patients are subject to more mental stress reading about these studies that will go on and on until we die from chronic and acute pain without any of our necessary dose of opiode medication. My spinal problems are way beyond everything that’s been tried in eight years from rods, screws to pain pumps and stimulators. Next and last is medical cannabis, if that fails I am done. Peggy has made a very spot on point, its all B/S

Michelle

Margie and Jill
Yes let’s get together to created a donations source to pay for billboards ? Any one else?

Pharmacy Staff knows

Thankyou Peggy! I’m so saddened to see this continued struggle for all of us .
Especially since nobody that is a pain patient is also a doctor who is also advocated , That’s literally what it would take for it to even be heard and even then would they listen. Is just wrong. They had time to think about studies before it got this far.

Debbie Solsbee, you are correct. Robert Rose is a former marine who has taken on the govt with lawsuits. He’s fighting for our vets & for those in pain. He knows pain well. He can be found on twitter. If interested in what he’s doing, look him up. He’s my hero.

Thomas Kidd, you are right, it is a genocide & I do believe it was planned & it started with Obama. Think about how the jobs were sent away & the hardest hit areas for drug abuse was in th hose states hit hardest. Regardless of what the fake msm & most journalist say, it wasn’t the whole country going to the Florida pill Mills that just conveniently do anything except sit & watch the pill Mills go on & on. Literally just sit & watch. I do realize there were other pill Mills around but it was Florida that hurt all of us the most.

Then there’s kolodney who either was part of the plan or just saw a money grab opportunity, but he sure lied his but off to get rich. The med he’s pushing is more addictive & far harder to get off of than opiods. And of course he makes money from that too.

Debbie, look up doctors of courage. Great info there & are definitely working to change things & if I remember correctly, they have a lawyer ready. They are serious about making changes legally & are keeping eyes on politicians who are for us in pain.

God help us all.

Jill

This is the best article I’ve read on NPR in forever. The venting and opinions of CPP’s on the site help individuals but have accomplished nothing! I get some pain meds, not enough but some. I am so afraid to do anything that might lose me those pills. But I’ve never understood why a law firm won’t take on a class action case. We get ZERO national attention! We are worse off than ever. I love the billboard idea. Part of the problem is there’s no way to get in touch with each other! Margie, if you read this (unlikely) its mccoyjill2004@yahoo.com.

Anastasia

I am absolutely ready to go to Washington, what I’m not prepared to do is look like an idiot when I get there. I think it only escalates the idea that we are mentally unstable when the argument is based in comparisons to some Nazi Police State and/or the Antichrist. It’s counterproductive, to say the least. Individual views on ‘Tradional Christianity’ and perceived signs of the ‘End Times’? ENTIRELY different topics than the current Pain Management Cisis. My fear is that when we’re not focused on the specific facts of the matter at hand we’ll just be further dismissed as raving drug addicts. Compliant patients should not suffer from deliberately manipulated data, nor should we be grouped together with either religious zealots or Heroin addicts who are upset with their tainted smack.

Debbie Solesbee

Yesterday I read an article about a group of inmates in a New York prison that is suing because they can no longer receive their pain medications or their Neurontin. Not even Tramadol, which I refer to as a Tylenol with an ego problem because that’s about as good as it works on chronic pain. If they can do it from prison, why can’t we do it here? I have asked many people if they were willing to join me in a lawsuit but nobody will. I hear alot of “it’s a great idea” and ” I’m glad someone is willing to stand up for the people who need their meds” followed by “I can’t take the risk of scaring off any more of my doctors, but good luck! ” Well, I don’t want to risk losing the one doctor I have that will give me less than 10% of what I used to get, either, and my rheumatologist I saw for the last 25 years retired because he said he wanted to be a doctor to HELP people but now all he does is cause more pain and risk jailtime if he provides proper treatment. And I don’t blame him a bit! I’d be scared, too! I would love bring a lawsuit against the powers-that-be for making my life hell. For taking away my ability to be a mother. To be me. To go to the grocery store. To walk to the bathroom. But unfortunately, I don’t have it in me to take the steps to find a lawyer who would take my case. Pain clouds my mind. But if I had other people along with me, we could spread the responsibility of the necessary appointments and could keep each others head clear and help each other out. So… The inmates in New York are my new heroes. Good grief, my life is pitiful! I hope they get everything they ask for and maybe, just maybe, someone more powerful will hear about it and LISTEN. I sincerely doubt it, but I hope so. All I know is that I’m miserable and my family is suffering too. If I didn’t have them, I’d probably be one of the increasing amount of people who just couldn’t do it anymore.

Celia

My fellow pain patients: I’m afraid if we don’t take a stand now then our rights will be eroded even more in what has become Police State America. Anyone even half-alert can see that America is not a free country anymore. Our rights have been badly eroded and will probably get worse unless we put a stop to it. What is going to come next – if you’re honest you’ll admit that you’re afraid of your own government.

This is reminiscent of Nazi Germany where the imperfect were eliminated. Obama allegedly built “death panels” into Obamacare. Every day we’re seeing government bureaucrats usurp more and more power from the American people. We are now living in a virtual Police State where all of our moves are tracked, monitored, watched, and analyzed.

We’re not in America anymore Toto.

The only issue left is what are we going to do about it.

Celia

Years ago a group of neighbors in our area were harmed by something our local government did. All our complaining yielded NOTHING. We organized a meeting and everyone EXPLODED on legislators who promptly rectified the situation.

I’m weary of emailing disinterested legislators, writing comments at the bottom of articles, and literally living in fear of our government.

WHO IS READY TO GO TO WASHINGTON AND DEMAND CHANGE? WHAT ARE WE WAITING FOR? VANILA SINGH TO FINALLY HAVE MERCY ON US AND GIVE US WHAT IS OUR BIRTHRIGHT – FREEDOM FROM PAIN? MAYBE WE HAVE TO STOP ACCEPTING THE STATUS QUO AND BEGGING. BEGGING DIDN’T WORK FOR MY NEIGHBORS YEARS AGO AND IT’S NOT WORKING NOW. THE ONLY THING THOSE WHO ARE DEAF TO OTHERS’ CRIES WILL HEAR IS A SHOW OF STRENGTH: SHOW UP EN MASSE IN WASHINGTON AND DEMAND A CHANGE.

IF IT WORKED FOR ME 20 YEARS AGO IT SHOULD WORK AGAIN.

ARE YOU READY TO GO TO WASHINGTON?

Celia

We can huddle in the corner and keep our head down if we are one of the lucky ones still getting medication to treat our pain. But if we do this – how are we any different than those who callously tell the hurting to go meditate their pain away? At some point we all know that a showdown is coming. We are going to have to go to Washington to be heard.

Vanila Singh placated patients with nothing but empty words. She should be tossed out on her ear and replaced.

I think the time for diplomacy is past. We have to go to Washington and be heard.

Here’s an idea, every person donate $1-$5 to have Billboards rent them to endorse our agenda but the Billboards would have to be in very good locations. Like at places at traffic stops that have a lot of congestion that they have to sit there that gives them time to read it. And I would elect Ed Coghaln to be treasurer. If he would be so inclined . I don’t know him. If we could get each state to send in a donation then keep those donations separate for each state so that each state is paying for billboard sign in their state or town depending on how much funding is collected verse cost to rent billboard. Its in people face. It’s got to be cheaper than a five second run on TV. Anybody have any other ideas to make the world stop and listen and put shame on the senators that are not allowing opiates?

Thomas Kidd

These policies are being put in place on purpose, the purpose being population control. I understand that most people do not believe this but there’s to much evidence to support it. The plans and guidelines of Agenda 21 do not care about the sick and dying. We are not important because we not able to work and provide the things which Agenda 21 needs to succeed. Sad that so many people cannot understand that the control of the masses is being put into action. We are living in the time of great wickedness and evil and it will not get much better. Perhaps a lull in the evil and wickedness will come but evidently is will continue. Something called Anti-Christ is here and has been for several years now. Traditional Christianity has been suppressed for the past century and the proof is all around us if we have eyes and ears to see and hear. The demonic teaching of evolution has brought our nation to where we are today. Yet when this truth is proclaimed most people turn a deft ear and close their eyes. I have watched as these things have unfolded in my 67 years. Continue to live by man’s modern day false science if want but Salvation is found only in Jesus Christ. Government cannot and will not save anyone. This is the beginning of the tribulation spoken of by Jesus in the gospel of Matthew chapter 24. Ignore His truth and warning at your own peril.

Cynthia

Dear Peggy Hillman….I agree with EVERYTHING you so eloquently said. Absolutely right-on!!! …I’m afraid we can only conclude, from all the [edit] that has transpired over the last 3 years, and continues today, that no one cares. They don’t care if we die. They dont care if we suffer. There are other groups for whom this is also true. Seniors without money are another group that they don’t care about (I see it everyday. I live in a large low income senior apt. Complex). The homeless are another group. The old who are sick or dying are another. Cancer patients are another. And there are many other groups. The fragile and frail are being killed off. They are all expendable now in this country. And that’s true. Sorry to say. …. Peggy, thanks again for your beautiful essay.

Maureen M.

Dear Peggy, Excellent piece! Well written, described, easy to follow and understand your exact point in representing us all!!, and precise. Not only Ca. but all states need to change.
I watched the For Grace video and had mixed feelings. I too felt that they were mostly leaning to alternative treatments which is not helpful for experienced CP warriors such as us.
I have been on opioids for 15 years and still get them (thank God!), although a much less dosage and amount than during most of those years. Therefore I am much more limited and suffer much more. This mess came on fast and furious 5 yrs ago and it must stop!!
Best of all in your fight! Keep strong awesome Warrior! We back you up!! Maureen M.

dana elise silverman

I want to add that I am on a multi-modal approach with several different modalities besides a strong dose of opiates well over the CDC Guideline but lower than my previous dosage, medical marijuana, acupuncture, exercise, stretching, use of a cane or walker depending on my pain level and how I am functioning on any given day, physical therapy up to maximum visits permitted by insurance per year (same with acupuncture), massage therapy, and meditation. I pay for medical marijuana, massage therapy and exercise trainer out of pocket which makes being a chronic intractable pain patient a very expensive endeavor. It is terrible that so many are unable to pay for it like I can..

Regardless, the notion that medical marijuana is a substitute for opiates is absurd, because they work completely differently. Marijuana helps take your focus off the pain rather than blocking the pain at the pain receptor level in the brain. They work well in concert, but I cannot imagine having to rely on cannabis alone.

As many of the comments have pointed out, it is as if chronic intractable pain patients are a disposable group of society going through our own genocide at this time in history. If losing our meds doesn’t kill us, we take our own lives, because we cannot bear to live unmedicated in the degree of pain we suffer with daily and nightly. The pain destroys our lives, livelihoods, functionality, sociability, and personal relationships. This is an all out war being waged against us. We are forced to do whatever a doctor asks of us just because doctors have the power over the prescription pad. It is unfair, unjust, and outright cruel. But, we remain powerless. We must speak up to our senators too, not just the DEA.

As an advocate for people suffering from chronic intractable pain, I know of over 100 people who have committed suicide due to rapid tapering and/or having their medicines taken away in one month’s time. It is shameful.

Debbie

I live in Pa. My Dr cut me cold turkey from my meds. Now I’m in pain 24 / 7 . I have been getting shots in my neck and bot helping st all. Now they are trying to push the medical marijuana card on us. I believe they are doing this for the money..

davidkenberg kenberg

What about New Jersey?? Sorry I’m tired of writing my hand’s off. I feel the same with this article.I will be done in as well as they have done the same to us patient’s to.Our death’s will be in there hand’s and they must not suffer in pain or they still get there med’s.I hope they will be able to look at the patient’s family in court for wrongful death suit. We have right’s and were being thrown in the trash like were nothing and the hell with our family and kids who have to see there loved one die right in front of them.SHAME ON YOU PEOPLE !! You know nothing.Most will kill them self as well.How dare they do this to us innocent patients!!! I’m done!!!

David Becker

The NPS was a thinly veiled effort for the AAPM, APS and their friends to dominate pain care via model national pain strategy- like that in Australia in this country- just as was the decade of pain research and control. And like the latter the former will be soon enough forgotten as it was underfunded and didnt have support from the larger medical community.
Needless to say not only were the motives impure, but misguided as they failed to empower people in pain with a call for new rights and better medical consumerism. It was top down expertcentric managerialism- its unfortunate members of the AAPM and APs cant evolve beyond their self serving expertcentrism and engage in multistakeholderism.
I understand 4 5 and 6 years ago pain advocacy groups thought the NPS was real progress and didnt take my view seriously. Oh well 5 6 7 years later- where is all the excitement and progress with the NPS? It was a rough beast that shouldnt have been born.
People in pain increasingly are realizing experts, government industry- arent their friends. They know they must band together in common cause and promote real change- not the phony bologne self serving dream child- NPS – of experts.
Experts are not to be trusted just because they are experts nor are professionals- we have learned they are cabal like creatures, too full of themselves and lacking in moral and frankly intellectual viirtues. Like I always say- they cant get it right.

Dr. David Nagels book “needless suffering” he states that Physicians have to carry out the law as it is written on opiates. Therefore that’s why I say don’t see any Physicians unless really necessary. When they lose money then they’ll start fighting for their patients. Instead of just for their license. If they don’t want to help us then let’s not help them making income. I am fed up.

Holly

Thank you Peggy! Well said! I will honestly say when I read the NPS i thought what a joke! This is nothing but blah blah blah.

Jamie

I wish i could write something as eloquent, but I am so angry. I have been in severe pain since the 90s. I haven’t changed. I’m not an addict. My spine is messed up, my muscles are atrophied, my arthritis is out of control. My pain is severe, but I cant get proper treatment for it because my drs are scared. My current dr freaked out on me because my pharmacy was filling my pain meds at 1 week intervals. It made it look like he wrote 5 prescriptions instead of 1. He was panicked! Now I’m sure of the reason why he refuses to take me or my pain seriously. He’s afraid of the powers that be. Now I’m suffering terribly bc of his fear. I’m livid and can barely string together a sentence bc of that anger. Thankfully someone else was able to do it.

You are absolutely correct Peggy Hillman. W/O protection & insurances which we all thought was part of the Disabilities Act but that’s become to mean absolutely non-thing. I think if we all just stop having these pushed surgeries bc we’re tired of dealing with the pain & the pushed spinal stimulators,injections & just all kinds of surgeries bc it just seems that we all end up in more pain & we have no help afterward. Just a bunch of empty promises about the surgeries. It’s all about what can make them money .if we shut down all the pain management by not going & stop seeing doctors & having surgeries but yet fight for our right for pain to be controlled not just by doing physical therapy, talk therapy in all the other BS stuff they can come up with. Once the medical community stops making money then they’ll fight for our right to adequate pain control. Bc as it is now what good has it done to even see physician or have surgeries? Most CCP are repeat customers bc of the issues so when they stop seeing us then their business drops. I have been @ orthopedic surgeons @ different times of the day & didn’t see that many people there what does that tell you? I have a complication & they will not even take a look at it w/ an MRI. I am worse off now than I was before surgery. How many r now worse off after surgery? I like to kn.

Debbie Nickels Heck, MD

I concur! If anyone’s interested, read what I wrote today on LinkedIn about the LAWSUIT AGAINST Purdue Pharma, how it hurts those needing legit pain relief & I hope anyone getting a dime from it only gets a Tylenol if they’re ever injured in a MVA, gets chronic pain or has major surgery. (How it scares me occas that a pharm comp & my FAVORITE UNIVERSITY w/the most ethical, fiscally responsible President have the same name. I fear the UNIVERSITY will inadvertently get confused w/the pharm comp & some wacko who doesn’t read an entire story will publish a story the University is behind this.) BUT back to the MISFORTUNES of REALITY. You’re exactly right on you’re points. Neither patients NOR Drs are protected in receiving what’s needed. It was bad enuf when INS said pts had to “fail” txs Drs knew were either dangerous, had already failed, or were otherwise inappropriate for not only pain but multiple conditions. If examined closely (always follow the$$), it WASN’T necessarily an OLDER product they had to fail. It was a NEWER, MORE EXPENSIVE one. I referred the LinkedIn readers to the statistics on Drs’ prescription-writing decreasing but increased opioid deaths. They don’t correlate.
Then I gave my usual lecture on brain chemistry & only 7% of the population even being at risk. Did they bring THAT up at their meeting? I rarely hear it.
I state it over and over–at every HIGH END FINANCIAL INVESTMENT MEETING I attend with my husband. It’s FUN being the Dr Trophy Wife!

Lisa

She has nailed it, for patients and doctors across America. This inhumane treatment has to stop and It has to stop NOW #heroin #illicitfentanylcutdrugs #patientsNOTaddicts. Lisa K Kronus, RN CPP

Sonia Bodie

Ms. Hillman, your article is outstanding and on point! The TIME is absolutely NOW! We don’t have more TIME to wait for further experiments! Sadly for so many TIME has ran out! We are definitely living in a TIME that is unlawful and terrifying!

Barbara Snow

Great job Peggy, I am living in Florida right now taking care of my father-in-law, who is now in hospice. I’m lucky enough to have a pain doctor who is able to undertreat me. I am not a drug seeker. I am a Mother, Grandmother, Great Grandmother. I am a chronic pain patient. I wish the media would dig into all the money PROP has. Paying their expert doctor witnesses $750.00 an hr. My Son works for them. Errr. All I know for sure, for me, is I will have to move from here, soon. Have no idea where. I’m scared to death. Pun intended. All I know is that I have to figure out how to buy underground pain pills. I don’t care if they kill me. Because that’s option B. But I am going to send your letter to the media, along with other stuff I have been saving. Thanks. 🙏

Well stated. If we could just get the news media to stop lumping prescribed opioid based pain medication with street fentanyl laced heroin…the panic attack by the government might end

Cindy

With the caveat of saying that I”ve not read the NPS, Peggy’s column makes a lot of sense to me.

Ed, can you tell us why you didn’t agree with her? Do you agree with her now?

Also, I’m not on Facebook and due to privacy concerns, have no intention of joining.
I tried once, with a new separate email address, a fake name and fake date of birth, and in spite of my precautions, within minutes, my FB page had a list of people I might know, which included people from my past — my long ago past. So I cancelled it immediately, even though I’d joined in order to be able to get info from some specific groups.

Patricia Williams

This is a great article…and from my point of view every word is true. Thank heavens I am not yet a pain patient but I am in my 70’s. still teaching etc and living with a couple of potentially very painful conditions…so I know it is probably a matter of time. Right now and for the past 20 years the ONLY thing I required of my physician was the renewal of the blood pressure meds..atenolol, Lisinopril and Amlodipine…All generics that have been on the market for years and have worked for ME for years. Now all of a sudden I find I must visit 3 times a year, undergo blood tests, have an annual physical, a mammogram etc, etc a colonoscopy or I will be dropped from her practice and cut off from my blood pressure meds which is EXTREMELY dangerous…If I forget them for more than 24 hours, my BP shoots up over 200…Somehow a herd management algorithm from some Wyoming cattle breeder has taken over my healthcare…and I am being treated like a maverick cow and, as I said..I am NOT on pain meds or tranquilizers or any sort of ” controlled” substance…so it is not JUST the DEA destroying patient/doctor relationships…Just mandated ” best practise standards” derived by boards of bureaucrats ( U can have MD after your name and be a bureaucrat😡)…Tell your doc what he can or cannot tell you, what he may or may not prescribe, what tests he MUST order you to take and, if he tries to make accomodations for particular patient situations, he can be sanctioned. The” Brave New World” has arrived…with an injection of ” Minority Report” thrown in

Chris Ward

That’s a great article period!!!!!

Anastasia

Well written article that should be mandatory reading for everyone on the planet. I have been on Opioid Therapy for 12 years now, and literally have been at only this Pain Management Clinic for longer than either the Doctor OR his sadistic Nurse Practbitchioner. After my long term Doctor suddenly retired due to his own extremely poor health, the NP told me that she was going to ‘get me feeling a lot better’. I was confused, because I had been at the same dosage for nearly 10 years and was already okay; we had gotten my doses dialed in just perfectly. In the space of 90 days she had taken away 80% of my pain medication, including all breakthrough pain meds. In desperation I asked to see my former Doctor’s partner and begged for it to stop. I still haven’t recovered, and am barely able to leave my room; let alone the house. It’s humiliating to not be able to grocery shop or even make dinner for my family. (Before this? I was an Executive Chef who regularly made food for 500 people.) I literally cannot survive on less medication than I have right now. I have had 16 operations on my right leg, and while I can walk again, the pain is excruciating and constant. I have a few extremely rare autoimmune diseases that most doctors have never heard of, and thus are embarrassed and hostile when I have to explain it. Added to the stigma of being a Pain Management patient? I’m an instant leper. (Incidentally, I’ve not been to med school? Yet can still find the ‘Google’ button on my phone. All the information is right there – but I’m obviously fabricating entire diseases.) *insert eye roll here* If I were abusing my Fentanyl? I’d be dead for a very long time now. I just want my life back. I truly wish that people would mind their own business and get out of our lives. If I had no medication to get through my existence? (I can’t really call it a ‘life’ anymore) I would unfortunately just be finished and go out on my own terms. Let the DEA explain it to my children. Love to everyone.

Dave

Thank you, I consider your letter well written and accurate.
For me the DEA and other’s have found their next host to proffet from. After ETOH prohibition ended they went after opioids, marijuana and any other drugs declared illegal. They, the cartels, police and prison industry treadmill have done quite well. Laws were selectively racially used too. Now that some drug prohibition is ending they’re needing new customer’s. This justifies money, guns and exercise of manly power.
In the USAF I learned that nonsense means, no sense; at least not to or for me.
Don’t look to Dr’s to speak out too much ‘re this issue. They’re generally overwhelmed with their own concerns and remaining solvent. From what I know some don’t get it, other’s don’t care and those who do care don’t want trouble.
CBD doesn’t work for me.
I lowered my opiates to lowest possible to protect my Dr.
High level THC blocks groin and legs pain but I’m too high to do much. It is good for a release from the cognitive, emotional damage of pain. I hear music again even if I can’t play as doing so hurts.
There’s a limit to the pain that’s operative at. Beyond that level I’m going to suffer.
Quarter century plus of surgeries, brain injuries and rebuilding. I’m blessed and, not so attached to life or this body.

James McCay

I read several of the comments before mine as I usually try to do when I’m able to read: Advanced Myasthenia Gravis is HELL (we should all know what we are ALL DEALING WITH!).

One place the NPR should start is- WHAT HAPPENED TO THE 1992 OPIOIDS THAT WERE TO BE MADE SO THEY ONLY WENT TO THE AREA OF PAIN (and NOT the brain) so no “high” would ever occur? All the doctors & RN’s were talking about this in my prestigious hospital: MARTIN MEMORIAL HOSP. in Stuart, FL for many months!
Then it just DIED OFF like EKG Signal Averaging that seemed like the future of Advanced EKG Interpretation and predicting heart attacks (by micro potentials in the QT segment over hundreds of heartbeats superimposed by a computer) BEFORE patient symptoms ever started!

THERE ARE SOLUTIONS THAT EVERYONE CAN AGREE WITH, BUT FOR SOME UNKNOWN REASON THE GOVERNMENT KILLS THESE IDEAS BECAUSE IT DOESN’T FIT “THEIR” MOLD OF QUALITY HEALTH CARE ([edit]; in another word).

Now the worst CHRONIC INTRACTABLE PAIN patients (and their Pain Doctors) were made the targets by the CDC for OVERDOSE DEATHS caused ONLY BY Fentanyl and Oxycontin that are ILLEGALLY smoked or vaped by 15-30 year olds (avg. age 25) which is something TRUE DAILY SUFFERING SEVERE-EXCRUCIATING PAIN PATIENTS (avg. age 50) NEVER WOULD HAVE KNOWN EXISTED UNTIL THE MEDIA CALLED IT THE “Opioid Crisis” as a general term NEVER specifically explaining WHO was doing this & why! So assumptions ran wild: and CHRONIC INTRACTABLE PAIN patients became the MAIN TARGET by ignorance & stupidity of the CDC which still continues from 3-YEARS AGO!

WE CHRONIC PAIN PATIENTS are going to continue to be made to suffer because once a LARGE GROUP of ignoramuses start thinking ONLY ONE WAY (that ALL opioid users are addicts), it’s nearly impossible to change their thinking. Just look at what HITLER did to most German people in 1933. THAT LASTED 12-YEARS!

The CDC MUST destroy their 2016 CDC Guidelines and ADMIT they were wrong!

Judy Dunn

I have a copy of “ The Death Certificate Project” posted by Medpagetoday,
Regarding California Doctor’s and Opioids. It’s about the investigations of
The Prescriptions, Doctor’s and what opioids were involved in patients
Deaths. Please let me know if this will help, I will email it to you.

Pamela Aylor

This is THE plan all chronic pain patients should stand with. This is the best option for a guarantee of restoring previous treatment levels. We should insist on more for our health, and know we will most likely be given less.

Gail Honadle

Well stated MS. Peggy. I’ve tried all the Snake oil, even Osteoarthritis drugs, all I got out of it was a Ruined GI Tract. Permanent GERD, Barrett’s Esophagus which is a Pre-Cancer, Gastropresis which is slow digestion, it has 1 drug that treats it, REGLAN, which is Black Boxed for Neurological Side Effects and should not be taken more than 2 weeks, yet Gastro’s leave patients on it forever if they can. 1 pill broke me out in Hives thankfully. From all the puking GP caused I developed a small hernia. Now my Colon needs Linzess to work. Tricare after 3 yrs demanded Prior Authorization. Gave 2 weeks to get it. It’s a 1 of a kind med. As a result any OTC or script drug that causes GI issues is not feasible.

While this has a minimal bearing on Intractable Pain, it should be WELL noted by those expecting a Child. I also want to add in the warning about Adhesion’s that will cause Intractable Spine Pain, that can form when a Epidural is badly done or done to often. It is not necessary, women have had children for centuries with out pain meds. Nitrous Oxide will help with relaxation, used it in England at 1 point. Then you had Thalidomide Babies https://www.theguardian.com/society/2009/jul/29/thalidomide-birth-defects-asbestos-drugs

Opioid Use Reduced When IV Ketorolac Added to Epidural Morphine Post-Cesarean

Ketorolac is the generic of Toradol, which will eat your GI tract up as fast as Mobic will both are Script drugs. It is one of the reasons it’s hard to get even by prescription. Anyone with GI issues will have horrid GERD in 1 day. Welcome to a bleeding ulcer. Are these medical professionals getting MORE STUPID? I don’t have a Pharmacy degree but I do know a lot about what drugs to avoid having a damaged GI tract. It will work on OA pain but you risk your GI tract’s health. These drugs drive up your Cretin levels BTW.

https://www.anesthesiologynews.com/Pain-Medicine/Article/07-19/Opioid-Use-Reduced-When-IV-Ketorolac-Added-to-Epidural-Morphine-Post-Cesarean/55296

T. Negrete

This is a great article for California. I have had to resort to legalized marijuana for pain. It’s not as effective as the Prescription Morphine that was yanked away, not by 1 Dr., however, 3 of them skirted responsibility and none of them would face me. There was one more treatment left that they wanted to do and it would have made my other conditions flare, so I said NO. That’s when they finally cut me off! Through research, I found out that Kaiser Permanente had already planned this, starting in 2009. I have absolutely no trust in the Medical Community. I do understand there still are very good Doctors, I’m not rich and will not be able to sift through all the awful programmed ones. In the past when societies wanted to reduce population, they started with the sick and elderly! I think this is what’s happening, otherwise these Psychopaths would reverse this much quicker! This is going to continue until were all dead
P.S. I know of true addicts who are still getting prescribed in my area, what’s up with that? This is insane!!!

Kurt Johnston

Very well written and I agree completely. What the government and scientific panels understand that true chronic pain patients HAVE TRIED EVERY OTHER TREATMENT method and they don’t relieve pain and I am talking years of alternative methods and still we can’t have a life because we can’t even get out of bed and so our really knowledgeable physicians prescribe opiates and then our life liberty and pursuit of happiness is realized like participating in our grandchildren’s life. Really are able to enjoy retirement With that statement I am talking about older citizens who tried for years but put our doctors in jail. Terminate a legitimate form of medical treatment we are as another writer put it Opiate Refugees. Whet is the humanity in this. Someone please stand for us and not retreat into a politically unpopular position

dana elise silverman

Peggy Hillman, what an excellent and rational way of laying out the counterpoint to the opiate bias. I cannot do it myself, although a trained attorney, because I get so angry.

I just wanted to add that one the one hand for those of us fortunate enough to still get opiate therapy at truly reasonable doses are seeing the one in a million doctor they found and must go off Medicare and pay cash for their visits. My doctor gives me a super bill for my private insurance through my spouse’s employer which I am fortunate to have. Pain doctors do not offer equal access at this point, since the CDC Guidelines appeared and it’s aftermath occurred. Therefore, the chronic intractable pain patients most at risk are the medically underinsured, those on disability without any other income, and the elderly on fixed incomes who cannot afford to pay cash. None of these populations can opt-out of Medicare/Medicaid (MediCal) or Medicare and pay for their pain management appointments even for their very survival.

On the other hand, the additional reasons pain patients are so focused on our opiate medication the lengths we go to secure it as well as the fear that lives in each of us that we will run out or it will be taken away from us. These are all reasonable fears, because they have all come true since ‘the opioid crisis’ and ‘CDC Guidelines.’

Thank you for your rational but impassioned plea for us chronic pain sufferers. As Dr. Forrest Tenant told me over a decade ago when I was in California, “Doctors treat Horses. They are used to seeing Horses. But, Chronic Intractable Pain Patients are Ostriches. When Doctors see us, they do not know what to do. It is easier to dismiss us as a Horse who is exaggerating, than to discover the new species of Ostriches.” We are all Ostriches wandering for a farm that will treat us humanely. That is all we ask for. For goodness sakes, animals are treated more humanely than Chronic Intractable Pain Patients.

I wonder why no one no from these foundations or organizations aren ‘t lobbying for pain patients .what we need is to sue our doctors for lack of medical care . Maybe that will start getting someones attention. The goverment has no right to be in our medical care to start with. I personally believe we re being used as escape goats by medical professionals. They are the ones who over prescribed. And they make up the cdc, medical boards etc.we are being denied adequate care. How can we pull people together so we can fight back

Lori T.

Peggy Hillman is right on this issue. As this ridiculous war on opioids continues, many more will die, if not by medical collapse it will be by suicide. I personally worry about my pain medications quite often. I refuse to live in intolerable pain while crazy laws are being written by those who know nothing about treating pain and the “powers that be” drag their feet gathering data. This is truly a terrible time to be a pain patient. All the while we the patients and our doctors know what the real cause of the opioid crisis is being caused from. Fentanyl from China and other foreign lands and poverty. If the cause of this crisis were simply overprescribing, the data would reflect a downward turn in opioid deaths but just the opposite is happening. Deaths are continuing to rise despite the clampdown on prescribing. Many pain patients are beginning to give up and find a way to tragically end their lives and the sheer amount of pure fentanyl continues to flood into our country. One day history will reflect on this very dark time in treating pain. I can only hope we as a compassionate people will never repeat this lesson. But we all know that history always repeats itself in one form or another. Just my two cents worth.

Danny

Bravo! I felt isolated when so many were celebrating after all of the alphabet hearings/statements: HHS, FDA & even CDC, to name the biggies. But upon hearing the focus on non-pharmacological treatments by many of these, I was quite skeptical that any improvements were being made.

After my brain injury, I spent nearly a decade being treated with these options, including the most extreme such as hypnosis and acupuncture. I must say that if anyone gets relief from these treatments then Hallelujah! But I can’t believe that a significant percentage of pain sufferers will get relief. I certainly didn’t.

Over the last 3 years, I have been punched in the gut by doctors, DEA and insurance companies. I have learned to accept that after a few months of constant prescription pain meds, the rug will be pulled from under my treatment by somebody. Let me say unequivocally, that is no way to live. I only pray that I will survive the next rug-pulling. I nearly didn’t the last time.

Duane Michaels

I must say that eveyone truly in pain who doesn’t abuse their pain meds should keep calling the DEA and tell your story to them. Recently for the second time I’ve been denied small amounts of pain meds. This time by the pharmacist who refused to explain why !
I’m in terrible pain every day and it’s horrible to not be able to function normally. I have no help at all. I have suffered so badly when doing the simplest things. Sometimes I need ( do not want ) this medication.
Until people realize and are able to differentiate those of us who are not abusers, we will continue to be deprived of our basic rights to Life, Liberty and the Pursuit of happiness as stated in the Declaration of independence !
I stongly reccomend everyone to call the DEA and explain why they need to stop over prescribing doctors who are the cause for most of the crisis.
There needs to be a balance and true understanding of addiction and abuse opposed to people who are being denied treatment. Those of us who are sincerely needing pain management by actual doctors that can justify and identify the abusers who’ve created this crisis.

Anon

100% agreed. It’s manipulation and more stigmatization will result as well as harm to patients. I carefully selected the best physical therapist in my area for my condition, knowing how fragile my body is, and he still seriously injured me. He refused to address it. I’ll never be the same. He was arrogant and angry at me for asking questions politely. Forget finding attorneys if you need one. I’m not a candidate for injections, procedures, or surgeries. I still use alternative methods, but they aren’t enough, and there’s no protection for my doctor or myself for doing what’s right. There are a lot of patients like me, and there are reasons why there are more of us than in the past. No one will address it. Oh, I’m also a physician. My husband is a physician and also has a rare, painful disease and has been through hell with this nonsense. My father recently was given nothing after an amputation—I was told he had phantom limb pain in the immediate 24 hour post op period. When he went into hospice I thought he’d get plenty of meds for anxiety and pain. Nope. My mom died with cancer prior to that, and she did not have adequate pain control either. I’ve written and called everyone. No one is interested. Until someone puts a video of a child dying and screaming in pain on the news nothing will happen. Disabled aren’t valued. Elderly aren’t valued. Show a kid that can’t get adequate care on a reality TV program is the only thing I have left to suggest. When Trump doesn’t know we’ve had multiple category 5 hurricanes during his Presidency, we have spree shootings continually, and kids dying in cages because they are the wrong color, what do we expect? Only billionaires matter in this country. Show them with your votes for one thing. Every single politician has to go and be replaced with progressives who care what happens to humans and the planet before we are all dead and the earth is uninhabitable.

Hayden Hamby Jr.

As a successfully treated with opiate medication pain management patient for almost 25 years now, I totally AGREE with Peggy! “Life” has become VERY difficult as a result of forced tapering by 80 percent daily dosage used for over 20 years. Without the medication we, my spouse and I could not have placed both of our sons through further schooling. I was forced through tapering of medication to “close the doors” on my small business after 35 years as owner/ operator. Forced to apply for SS Disability. Forced to stop my religious practices. Forced to stop even leaving my home except to gather the very basics of life itself, food, emergencies. “Life” is not good now.

Cindy R

I agree with Peggy. My pain management physician was recently visited by the DEA, and I may not have a PainDoc next month. Last year he had cut my dose of meds by 25%, breakthrough meds by even more, and had told me he could no longer prescribe the 30 Valium I got per year for extreme muscle spasms. He instituted mandatory urine tests several years ago. In short, he has been doing everything “right”, and yet his license was suspended. It doesn’t matter what policies are discussed, or what laws are passed, as long as the DEA can walk in and shut a doctor down because his patients need more than the CDC guidelines.

This well-stated argument demonstrates our need to make our case in the law courts. There is tremendous prejudice against us among marijuana users, because most marijuana-dependent people suffer conditions like ADHD, seizure disorders, or spasticity disorders and derive actual benefits from the drug. When their political leaders falsely state that pot cures chronic pain, they repeat this ignorance.

No physician would debate “Iron versus Calcium” or “Vitamin C versus Vitamin B-12”.

Real doctors want the patient getting a healthful amount of all the nutrients.

Yet we’re stuck in a “Cannabis versus Opioids” argument that needs to resolve by accepting that each of the drugs has value and same patients will need them both.