CLAAD & USPF show unwavering support for PAIN Patients & FDA Commissioner, Dr. Margaret Hamburg!
Dear Blog Followers,
Hundreds of you have e-mailed me or posted comments to this blog constantly asking for some permutation of “when will anybody show support for us pain patients”. The days have come and I believe it is only the beginning! The reason? Many healthcare providers are finally “Fed Up” just like the patients they care for!
Recall your rejoicing when the FDA put the cabbash on PROP last year with a letter dated September 10, 2013, essentially putting an end to requested opioid label changes, the foundation of which was built on little but brittle egg shells causing much angst amid patients suffering from legitimate persistent pain syndromes. Nevertheless, two years following the initial petition request as outlined here, many supporters of the anti-opioid campaign marched in D.C. last week to what they called the Fedup rally.
Atkinson, Schatman, and yours truly said it all in a recent article, The damage done by the war on opioids: the pendulum has swung too far. In fact immediately following publication and open access release, we saw a “Twitter War” with outrage from several anti-opioid zealots. Despite the initial petition being denied by the FDA, the article pointed out that “the proposed changes have crept into policy and practice within various health systems, prescriber networks, insurance plans, and community pharmacy retail chains. For some, this reflects the desperation for potential interventions to address the opioid problem, while for others it has provided the justification to deny care to legitimate pain patients requiring time and valuable health care resources to adequately treat and monitor. Meanwhile, third party payers continue to deny or severely limit adjunctive non-medication options such as physical therapy, acupuncture, chiropractic care, exercise programs, etc.”
But, the purpose of this post tonight is to highlight strong support letters from two very prominent organizations; Center for Lawful Access and Abuse Deterrence and U.S. Pain Foundation. Both of their supportive letters have signatories from several other organizations comprising hundreds of professionals that are in your corner!
Oct. 6, 2014: U.S. Pain Foundation: Full Letter HERE
“We are writing you to express our unequivocal support for the FDA Commissioner, Dr. Margaret Hamburg, and her colleagues at the FDA who have consistently made fair, balanced and rational decisions to protect and promote the health of all Americans. FDA professionals under Dr. Hamburg’s leadership have taken extraordinary steps to curb the abuse of opioid medications while at the same time protect access to these essential medications for the millions of Americans living with chronic pain who use them safely as prescribed…”
Sept. 29, 2014: Center for Lawful Access and Abuse Deterrence: Full Letter HERE
“The undersigned organizations write to express our support for Food and Drug Administration (FDA) Commissioner Margaret Hamburg and the agency’s demonstrated commitment to reducing prescription drug diversion and abuse under her leadership. We are diverse organizations whose missions align around the dual goals of reducing prescription drug abuse and advancing consumer access to high-quality care for pain, addiction, anxiety, and other health conditions…”
Perhaps next year, we should “meet up” with “Fedup” at the very same rally. We can call our group, “UpUrs”, United Pain Unit for Reasonable Solutions!
THANK YOU CLADD AND USPF – You are my heroes!
Please lets see some comments!
40 thoughts on “CLAAD & USPF show unwavering support for PAIN Patients”
I am a chronic pain patient, Living with a Bad Spinal cord injury. I can attest that NONE of the NON opoid treatments have worked for me in my 17yrs of living with the injury.. I am FED UP with people with NO idea of what a spinal cord injury is trying to facilitate what is better for me.. I AM THE ONE WITH THE SCI!!! i have tried everything.. and therapy only works with GOOD pain control. i see others who like myself cannot get out of bed without taking the meds, I literally cannot walk without my opioid meds. now why on earth would they want to take my ability to walk away from me? i already suffered as a paraplegic and continue to suffer everyday , BUT i am able to walk with my opioid medications. i can play with my kids and do household chores. It really makes me upset to see people with NO good reason have waged war against me and my ability to be a father and a husband. i am , like other patients “collateral damage” . maybe those who have waged this war can explain to the families of people like me that , these drugs do no good and i am just a drug addict. Get off my back! i just want to be as normal as possible with my chronic pain due to my SCI
where is the voice dont hear nothing we need to be able to voice are rights on tv /radio the senate .ive had 3 back surgery .constant back pain /neck pain have been throu injection therapyand alot more. my last surgery 2013 the doctor cut or nicked a nerve that created dropped foot. this was the worst surgery of my life i had muscle spasm for 3month 24/7 still this day i have pain i have been on norco hydrocodone since 2005.that is the only medication that helps me function half normal life .i think in in october they would not prescribe me more meds . so my dr put me on tylinol 4 with codein plus remainder of my hydrocodone to take to wing me off. the tylinol 4 just puts me to sleep. anyway now pharmacist cant get tylinol 4 what are we suppose to do go out and buy in the streets. im 58 years old have been disabled since 2005 with cronic pain and alot more ihave all my mri since 2001 and still cant get my medication i wii be goin to pain management in february even then if i cant get my prescription i dont know what im going to do, the pain is to unbearable. why cant senotors realize what they are doing to the elderly and all the cronically ill people.lets hear a voice too many good people are dying because they are not getting there medicines
Hi im glad I found this site, first I’ve lived in bed over 9 years. I’m now 43 and I am disabled on SSI , I got sick in 2003 overnight I thought it was the flu and it never went away . I had 2 quit working quit going to school , I thought when a dr diagnosed me with Chroinc myofacial pain syndrome that my life was over as she told me I’d be crippled in 2 years. And they were no cure. But that was only the beginning of my nightmare. I ended up in bed which is now over 9 years due 2 CFIDS/ME. The usa just real used how debilatuing just Chroinc fatigue shy drone was and the severe pain it causes alone much less me having myalgic encephalomylitis which is worse than MS, Aids, and Cancer combined. I also have severe nerve damage ,RA. Cervical neuritis. Cervical and lumbar spondylitis. . C1 c2 C3 c4 L6 my whole sine and cervical is damaged . Bulging disks , degenerative disk diseases. . My immune system is shot . The myalgic encephalomylitis affects every single thing in your entire body till it kills you. My heart is done enlaged over it , I’ve had a light stroke over it . I suffer so Severly in pain that words can’t even begin to explain.. I don’t get enough meds to help my pain , I have to pay cash at a pharmacy he refuses to run my medacaid . Im ashamed of this , but I go several months without bathing . Im not able . There is no cure none for any of my diseases and it can also cause pancadic Cancer as well as open the door to every other auto immune disease and every other. My vascular system is afftedted I’ve had clots over my diseaee. I can go on and on. It’s not fair not fair at all for me to suffer and others as well because of the laws they have . If they can check everything else , why don’t the Gov check everyone’s medical history and see who really needs help and the ones that don’t . Just because ppl abuse there meds diesnt mean we all do its not fair . It’s wrong for the gov to deny those of us suffering Severly to not help us. My live is bern in ipad bed and sick since I’ve been 32 years old , my life has been taking from me over my diseaes and suffering . My dreams of having a family , a carrer everything has been taking from me . My disease has caused thousands to take there own life because they couldn’t get the help they needed for there pain. I’m getting sicker and suffering more and more everyday . THIS IS NOT FAIR ,ITS IN HUMAN NO EMPATHY NOTHING .THEY NEEDS TO KNOW WHAT ITS LIKE TO SUFFER AND BE DENIDED HELP WHEN YOUR DYING FROM A DISEASE . I NEED HELP AND SO DOES OTHERS . WHERE NOT DRUG ADDICTS !! where suffering .. I HOPE THAT MY VOIVE WILL HELP . THANK U DR FUDIN AND WEBSTER FOR ALL U R DOING FOR US . God bless u both .
I am joyfully overwhelmed! Thanks to a recent, rather eventful experience I had trying to fill a prescription for a pain medication without acetaminophen, I found my way to the US Pain Foundation & I’m a new Pain Ambassador.
I suffer from Cervical DDD & after 3 surgeries I am on disability. I’m only 51 & very frustrated that I am unable to work. Now, thanks to the pain meds I’ve been on for 12 years my liver enzymes are starting to elevate. I have a great pain mgmt Dr who is very comfortable prescribing other meds, but I can’t get the prescriptions filled! I’ve had very informative conversations with the pharmacists & their hands are tied. What is the point of allowing a doctor to treat a patient if the politicians & policies won’t allow the support network – pharmacists, physical therapists, chiropractors, etc. – to fulfill the doctor’s orders? We might as well go back to the good old days of bloodletting & leeches!
My heart goes out to everyone who has shared their story. I am in awe of the collective strength we have! Alone, I am a whisper. Together, we roar!
Keep up the good work and thank you for the support!
you have lived through failed surgeries, forced to take repeated tests and put through countless procedures that you know will never work. All you have left is medication to control the pain. Over the years your illness has disabled you, bankrupted you and forced you into Medicaid. At this point you hear over and over that the doctor’s are just treating the pain and not getting to the root of the problem. Maybe in some cases this is true but I know in mine there is not going to be any cure, the disease is degenerative which means will get worse. For people who have endured all of this we are left with only one option and that is to dull the pain. To take away the last hope of being able to get up off the couch and get to a pool or gym to do the daily physical therapy that this horrible disease demands should be criminal. I do not take my medication to get high, I take it to fight my disease by getting up and forcing myself through the pain to keep moving and keep doing the daily physical therapy that keeps me from deteriorating even further. All I am doing is trying to slow down the damage. I have all the proof and metal rods and screws in my body to prove I am in intractable pain. Leave me alone, you do not have the right to take away the last hope I have. You do not have that right and should never be allowed to have that power. When this happens it will be the beginning of the end of freedom. I have a disease and need medication to function. It’s as simple as that.
Dr. Fudin, Thank you for all of the hard work you are doing. I have been very fortunate to have a good provider that understands chronic pain and is not afraid to prescribe pain medications. But I have seen many people in my community that are suffering because of all the panic most doctors seem to feel when it comes to prescribe opiate medications. I am a Colorado Ambassador for the US Pain Foundation and we must all come together and fight for our right to be treated fairly and have our pain treated appropriately.
Yes, A BIG THANK YOU! to Dr. Fudin & those who are seeing we are not just “street junkies” or other labels thrust on us. We would love nothing more than to only see our GP for yearly physicals! I’ve been lucky to have a good Doc so far, but always have the underlying fear of him retiring or passing away! Then what? I think I know. I’ve experienced the “Walgreens Effect” of 1st, “It’s on the truck” & “It didn’t come in yet” & from keeping up with others posting, I informed my Dr I had to change, found a “mom & pop” pharmacy & took my business there, before Walgreens had any chance to put me on some “addict list” or something. And who knows when/if the Mom & Pop decides “they’re not comfortable filling this”?? The meds we take are all that’s available. Where’s any new meds that kill the pain but arent “a problem”? I see ads all day pushing Testosterone, Meds so you don’t have to pee at the mall, etc etc, but not a thing for intractable pain. Nothing. It’s immoral what’s being done to law abiding folks. Again, thank you so much for all you’re doing to help us “invisible victims.”
I live in Denver, CO and am wondering if your being a Colorado Pain Ambassador has given you any shareable information/referrals naming Metro Denver docs who acknowledge severe fibromyalgia as a disease deemed valuable enough to treat its patients with adequate, case-by-case opioid doses on a long term basis. I had a 6 year workable regimen alternating two opioids w/o any dose increase until my PCP’s partner decided one of my two meds would ‘kill’ me, which threw my plan into the gutter. The past 8 months I’ve been under treated, developed clinical depression after my PCP, w/o basis, called me a liar and thought I’d gotten drugs off ‘the streets!’ All the offices I’ve called don’t recognize any FM sufferer’s need for opioids.
Where would you recommend I turn?
Thanks for your work in this area — the DEA has decimated long term chronic pain relief, as you know.
Thanks so much for the sensible approach! I sure wish I could share your enthusiasm and perspective. I’ve watched while the anti-opiate hysteria built and was rebuffed by the FDA only to see PROPS do an end run by introducing their ‘reasoned points of view’ at the state level. In Oregon, where I reside, we have Oregonpainguidance.com to ‘save’ us. A new effort, by the way. With our former ER doc governor, the state has shared its awful policy. Built on PROP ideology. My point is there is still a long way to go, and from a few different directions, too.
Thanks again for what you are doing! Your work is so important and I am grateful.
Thank you for this blog and your words. I am an Ambassador and Advocate for the US Pain Foundation. It is truly an honor for me to be part of a wonderful organization. Through USPF I have met many fellow chronic pain sufferers. In fact one of my fellow pain sufferers, I’m in her wedding this very weekend and only met her in person yesterday as she lives in California and I am from northeast Indiana.
Through USPF I have been able to help those living with all forms if chronic pain, mainly by listening to them and sharing my chronic pain story with them. So many times I here, “I thought I was the only one with this. I feel so all alone.” Though I’m not a health care professional just listening and sending resource information is rewarding.
Sometimes I not only talk with the chronic pain sufferer, but I will talk with the caregiver as they feel like they’re alone as well.
This last June, 2014, I attended the US Pain Foundation’s 1st Annual Advocacy Summit. Now, I can’t wait to help even further and even more chronic pain patients via testifying on our behalf in from of either State or Federal Congressional Committees.
Thank you, on behalf of all “Pain Warriors,” for creating awareness about the millions of people who struggle and suffer with chronic pain. Many doctors, even so called “Pain Specialist” are scared to prescribe pain medications anymore. Yet, you stand strong for us all. I stand as the proud Massachusetts Ambassador for the U.S. Pain Foundation, and want to acknowlege the efforts of it’s founder, Paul Gileno too.
Strength Through Unity,
I am thankful for what you are all trying to accomplish here with the controlled medications. I am am advocate for several organizations US Pain Foundation, Arthritis foundation, and SAA. I too am a long standing sufferer of pain for over 15 years. I believe what the government is trying to do is absolutely again st our rights. Yes there see junkies and drug abusers out there but there are also people like us that need pain medication to help us deal with our activities of daily living. As am advocate and a nurse I feel this is In humane to patients who truly suffer and have moderate to severe pain on a daily basis. My pain is constant it never goes away. I have multiple diagnosis such as AS, Fibromyalgia, neuropathy, neuralgia in different areas of my body, bulging disc in my cervical and lumbar region with DDD in cervical region and osteoarthritis in my lumbar facets along with bilateral acromioclavicular osteoarthritis in my shoulders, thoracic radiculitis, IBS, Gerd, calcification in hips with osteopytes and the list goes on and on. I have proof from drs of these diagnosis along with MRI CT scans and xrays. I have tried Pt
and Ot and unable to do it because of pain. I have tried biologics and methotrexate which made me highly sick with pneumonia 2 times and severe sinus infections constantly. So there for rheumatologist told me “I was too difficult” and referred me to pain management. If it wasn’t for my pain dr doing injections and prescribing medications to get thru the day or even be able to function I would be like the tin man. Stuck because that is what happens. My joints stiffen to the point I can’t move or walk and have to highly depend on my wonderful God sent husband and mother who by the way also suffers from the same disorders.i do still work
Full time 32 hours a week because I have to. Bills to pay and I am a fighter and not ready to give up my nursing career of helping others, but If I didn’t have my medication I don’t think I would be able to do it. It does not impair me or my judgment in any way. But gets me thru. I feel we as Americans have lost I rights what happened to Freedom? I feel for those who live on limited income or who have no support group and unable to get the meds they need. I personally believe the biologics they try to give us cause more harm Nd problems than pain medications will ever do. Biologics cause severe immunocompromised patients cancer anemia pneumomia TB and many other serious diseases that will make you even worse off than you were. If this law goes thru, what happens with the right to be comfortable or palliative care hospice patients us etc. It is a orients right to be free of pain or as close as possible. This is ridiculous and already affecting our rehab and long term care patients in facilities who need these meds just like we do to survive. I feel the suicide rate will and already is increasing due to this already taking effect in some areas and no support. We jave lots of support groups on Facebook that people highly believe in and when I tell you some comments are scary I mean this. I fell we have saved lots of lives from just being there to talk to and support people when they are at there wits end with life and say they are done and give descriptive details on ending their lives. Very sad we have had police department, 911 and other services have to go to check on some of these people because of the pain and unable to get their medication because of money or limited qualities from Drs..So thanks to u for fighting for us and we will continue to do so as well. I also feel and am working on right now with some organization’s on getting info for hospital ER and fire departments on how to care for us because they think we are a joke do absolutely nothing and send u on your way. So education it is from me to them when I receive it. We are humans just like anyone else amd deserve to be treated fairly to. But when you mention I have AS and fibromyalgia and .Having a flare and can’t walk because of it I literally had a PA look at me and say “huh” no clue and past 2 times I have been to the ER they do nothing
No blood work no IV no nothing because they don’t k ow what AS is or how to treat it so for our local hospitals here in my area in Florida hopefully they will soon. Thanks again. Sorry for the book but I believe this subject on pain management is so critical for millions of people so please keep fighting. And by the way my dr. Drug test me every 3 months to be sure I only taken what is prescribed to me so what is the problem. Our world and government has gone to crap. No care at all in many areas for human in general. So rock on. I am spreading the word and having others in our groups fill out the information on the petition.
Hello Heather. My hats off to you for still being able(and willing) to work while facing severe injuries/ illness all the while facing such adversity. I am sorry you were mistreated @ the hospital. It sickened me to have experienced this disdain cast upon us by judgmental medical professionals firsthand. Also whenever I go to my online support group forum (connective tissue disease(s) [autoimmune disease(s)].I read of many similar experiences and realize how often other legitimate patients face this unnecessary discrimination.
One Question I did have though: What is AS? Does AS=Ankylosing spondylitis? or Asperger’s Syndrome?
While not an all inclusive list, this link may help other readers/contributors who are unfamiliar with some of the medical/disease acronyms used by contributors here on paindr.com and other helpful sites.
As an 11-year chronic pain veteran as well as an Ambassador for the US Pain Foundation, I am eternally grateful for your knowledge and advocacy surrounding opioids and their place in treating chronic pain. Over the years, I have lived in the shadows of suspicious (though I suspect mostly well-meaning) people, particularly in the medical community, due to my condition’s lack of response to common and even uncommon treatments. I can state with a bold certainty that I have always taken all of my medications safely, as prescribed, and under the direct supervision of a doctor. I do not have the desire to abuse my medications; I need them for the days when the pain is too intense to function. Chronic pain has cost me several jobs, several friends, and more than several years of my life. It has taken an enormous toll on my mental health, especially during the times when I was denied opioids and left to suffer in silence, even with all other options exhausted. For whatever reason, people are fond of separating pain into two categories: cancerous pain and non-cancerous pain. I fail to see how excruciating, unyielding chronic pain needs to be downgraded simply because it is not a result or side effect of cancer. Your blog, as well as your article “The Damage Done by the War on Opioids” give me hope that our society will re-calibrate its views on the use of opioids for chronic pain and recognize that pain patients as a population should not be held responsible for the acts of addicts, nor should we be punished by having medication withheld from us that could (and often does) greatly improve our quality of life. You have my attention, my support, and my gratitude.
that is the biggest joke of all I’ll bet a lot of people who have cancer have less pain than I do and I’m sure there are those who have a lot more. This I find is the most, well one of the most bizarre rationales out there as is pain from one particular disease deserves to be taken seriously and everyone else isn’t. I guess we all just leave our successful careers of years in the making and decide one day at maybe 50 years old i’ll just sit back and fake it and walk into a doctors office and get handed narcotics. I only took narcotics after living for years with pain and then deciding I would either have to commit suicide of get the surgery then you get 2 failed surgeries and every one walks away like rats from a sinking ship. Then you endure the procedures countless then after many repeated procedures it’s the NSAIDS, Then after a few years you start having stomach problems then you have to take a drug to coat your stomach so you can take the deadly NSAIDS. Then one day you wake up in the hospital bleeding internally and are told you can no longer take NSAIDS which by the way kill more people yearly than narcotics. I decided I would take pain medication at that point or it was suicide. Once pain get’s to a certain point it is a disease in itself. To deny a legitimate pain patient the right to pain medication because Tom Dick and Harry are stealing them out of their friends medicine cabinets is criminal. They shoot horses so why should humans be forced to live with pain when there is nothing left but pain medication. I was told to take NSAIDA by one of the PROP doctors who said he had severe chronic pain and took NSAIDS. I had to tell him a medical doctor how deadly they were. Pain is pain no matter what the disease is cancer is painful but so are many other things. The other thing is cancer paitients are living now so should you just give it out to the ones who have less than 90 days to live??? A lot of these doctors who are pushing so hard to take the medication away are doctors that will benefit from everyone being thrown off of medication as now you can treat them like addicts. Congratulations for all the miserable people who will have to kill them selves rather than exist in agony. Don’t you have any humanity or conscience. The drug problem is due to the few doctors who hand them out to people who don’t have pain. This withch hunt has legitimate good caring doctors scared to do their jobs. Go after the abusers but leave the rest of us alone who have cancer and noncancer pain. It is Hitler like to think that you should control everyone who is in pain according to your beliefs. I’m glad I have a decent doctor who is a human being and an expert in pain management. I feel very blessed to have this as my last hope of ever living a somewhat normal life. Please don’t take my last resort away I have tried all of the other modalities and wish I had half of the money I spent on useless procedures and therapies.
This post and the comments are very encouraging…
Loves, pain, compassion… all are universal human experience.
Our shared experiences and core values remain the source of our strength and are the keys to winning this campaign to bring pain care out of the shadows.
We all have a stake in this.
We are more tightly bound by what we share, than separated by how we differ.
shows us where
show us how
Thank you for all of your hard work and common sense approach to the pain patient community. I am a pain ambassador for the US Pain Foundation and our fight is a hard one especially for those of us with major health issues. My pain has made me disabled and unable to work or enjoy my life as I once did.
Dealing with the wild and unreasonable mind set of the anti pain medication crowd makes being in constant pain even more difficult. Being ill treated by medical staff and pharmacists should not be something that a person in constant severe pain should have to deal with. Stress causes more ill effects on many of us and that is being over looked by many health care providers and pharmacists. First do no harm?
I believe that compassion training should be implemented at health care facilities as aggressively as “how to spot a junky” training has been. I know I am not alone in being treated badly or rudely by clinical staff who know that I am sick and in pain (medical records all back it up) who dislike me for my condition. We who are sick did not chose to be this way or chose to become ill, nor did we opt for pain medication treatment. That is what life has dealt us and we need all of the support we can get from others especially health care providers.
Again thank you for your efforts.
The wild and unreasonable hysteria of the anti-pain medication crowd makes me wonder if the now deceased Ebola victim in Dallas 1st sent home from ER was suspected of “drug seeking,” so cut loose to spread it further! The hysteria is blinding the medical profession into a state of tunnel vision, missing extremely important disease cause all they see is a “drug seeker.” It’s got to stop, it will/ already likely has caused unnecessary deaths.
I suffer with a lot of health issues for over 14 yrs.My prescription plan I was with put me in a donut hole.
I had never heard of this before.Not only did they take thousands of dollars from me,they let me go.Now I am facing the problems with pain medication and using marijuana.I was told I have to let one go.In a state that is legal.This system is just not working .
As things have become not at all sensible or acceptable on dispensing of opioids from pharmacies my last script which is less than half of what I use to get just last May was put on hold for whatever reason I have no clue. I didn’t complain ,no questions asked , I didn’t call asking when it will be filled, this particular pharmacy has a human voice box that calls you when the script is ready for pick up.
I wanted to see how long it would take to fill this one script .
I dropped it off last September 25th at noon, it didn’t get filled till October 3rd at noon.
Any other med. would have been filled that day, what’s happened to our Country ,Land of the Free.
For those that suffer in unrelenting ongoing chronic pain we will never be free of the pain that consumes and confines us . Seems we that suffer are being limited not only from what helps us live a somewhat normal life but we’re being squeezed out and ignored. Good thing I will always have the right to voice my opinion by writing what’s on my mind.
Myths are widely held but are mistaken beliefs.
Thank you for organizing #GivePainAVoice
The reason we have organized to #GivePainAVoice, is precisely what Dr Webster, Dr Fudin, Mr Miller and Mr Gileno describe. We patients cannot allow others to speak for us, because invariably they get their facts fouled up and commingled with wishful thinking.
The entire cause of legislation on the subject of addiction, is a myth.
That myth, which holds than an evil spirit possesses the molecules in a medicine bottle, puts the user to sleep, does evil deeds while impersonating him, then vanishes back in the bottle while the drug user swings from the gallows, is a total fabrication.
Lawyers found the myth convenient, as a foundation for insanity defenses.
But because the myth is a lie, it causes harm wherever it is believed.
Yes, some people need a vacation from their responsibilities but do not know how to take one. Teaching them safe ways to do this (e.g., getting help, taking time off, taking up a hobby), empower them to resume their responsibilities, fully rested (as opposed to hung over from a binge of substance abuse, with perhaps some legal troubles for harm they did to others, while binging.).
The myth, as expressed in American law, creates perverse incentives that encourage people to do our very worst.
Ask others for help, and one proves that one knew there were alternatives to a violent act. Lash out violently without warning, then blame temporary insanity that came from a bottle? A sharp lawyer might get one off for that!
So, we have laws on our books that reflect an entirely-false understanding of the process by which humans make decisions and the Influence of drugs on those decisions.
A case in point. Yesterday my 90-year-old Dad had an accident at home and fractured his femur. He’s hospitalized, on an acetaminophen drip, and getting periodic doses of morphine. Tomorrow he’s scheduled for surgery to replace the damaged joint with a titanium sphere. He was not legally capable of consenting to the surgery because he’s not awake long enough to hear what was being discussed. It was up to me to decide in his place.
This is the true nature of both pain and the medicines that relieve it. Neither pain, not pain medicines, will cause a person to take any action at all. Even an action that’s necessary to save life.
Hence, the fatal defect in America’s laws, is that we equate the action of real drugs that lead us to inaction, with mythic forces that take action for us and commit heinous acts in our name.
That must stop.
Hence, our focus on creating a Patients’ Lobby, that actively promotes every person’s individual right to self-defense, against diseases that cause pain.
In our view, every mode of treatment that helps anyone, must be lawfully kept accessible to everyone who might benefit. Anyone who would benefit financially from a patient’s decision to die (such as a governmental body or corporation that spends money to provide health care), must recuse itself from deciding what is “too much pain medicine for life to be worth living”, because it has incentives to believe lies that shortchange patients on life and subject us to unnecessary pain.
We need only count the suicides that happen, under our current system, to see that this is so.
Insurers make profits, when people die before collecting benefits.
Politicians make war, with money they didn’t pay out in promised benefits.
Neither should be able to influence us to choose to die.
Beyond a doubt, they do.
Our silence, thus, is no longer an option.
The reason we have organized to #GivePainAVoice, is precisely what Dr Webster, Dr Fudin, Mr Miller and Mr Gileno describe. We patients cannot allow others to speak for us, because invariably they get their facts fouled up and commingle
Thank you for all the information you give us and the hard work you do.
Some Pain Specialist are running scared and giving up and you keep on giving us your all.
I remember when the U.S. Pain Foundation first got started , now their doing well.
I would like to wish Paul Gileno well ,the website looks really good.
First off let me say that I have the utmost respect for you. I also appreciate everything you do to advocate for those of us who are suffering not only pain but the indignity of discrimination.
But ouch, nice gut punch outta nowhere, wow! I didn’t expect that one. Thank you for the civics lesson and brush up on economics, it’s been a few years since I got my degree, but no Dr Fudin. I do not expect Big Pharma to become charity organizations. I rarely if ever blast Big Pharma so you must have me confused w/ someone else. And you are correct, the last time I checked we are not in a socialist or communist country nor am I a communist nor do I advocate for any similar type of government. Though we do seem to be leaning towards corporatism and fascism (see your own thread on Protect Pain Care [think 4th amendment] and the part about IN HOME PILL COUNTS on a pharmacist’s SUSPICIONS????egad!). I think that Big Pharma, the addiction treatment industry (POOP/Kolodny), law enforcement entities, etc are striking while the iron is hot if you will, trying to secure any and all objectives (money, allocations, seizures, regulations, fines, etc) that they can while the issue of the opioid ‘epidemic’ is front and center and still properly obscured. [Though not the most knowledgeable person on our healthcare system, pharmacies, medications, and other topics discussed here, I am learning so there is no need to belittle me or my intellect on your blog].
Again, not a communist, but I AM a REALIST and I am just stating the facts as I see them and how they will be affecting myself and other patients who require legitimate medical care. My point was this, IF all opioids which are cheap and widely available, are required (compulsory) to change to AD opioids as CLAAD’s mission states, this helps to accomplish neither of their aforementioned objectives. It is NOT much of a deterrent to addicts (see the many videos or any addict friendly advice sites) who can easily defeat this ‘technology’ and it makes pain medication LESS available to patients with chronic pain who are having enough trouble staying afloat financially as it is.
All I was trying to say was simply this, why burden patients with more hoops and monetary roadblocks to treatment with ineffective measures to combat diversion if they have proven to be compliant with the ridiculous amount of safeguards that are already out there now? With goals like this in mind (making all opioids AD ONLY), from my point of view at least, it just seems like more of the same, addicts go on doing what addicts do, politicians look tough, Big Pharma looks responsible, and pain patients get stuck with the tab. I think that there are enough safeguards in place for those who have proven to be able to use these meds responsibly to make someone switch to an AD medication which will cost many x the price of their current medication is being overlooked, that’s all i was trying to say.
IMO, the more safeguards we add the more we are pricing pain management out of reach of the ones who need it the most. Let me give you an example other than the push to exclude all but AD opioids.. At my PM clinic we are tested every time we step foot in the office no exceptions (hats off to those who held stock in UDT companies) but it accomplishes little. Even a dim addict knows he can take a few doses of his Rx for a couple days before his appointment and quit using any illicit drugs temporarily, easy peasy. IF the goal was to catch these guys why not call a week or two after the appointment AT RANDOM say 3-4 times a year giving them 24-48hrs to report to a lab or the doctor’s office for a screening? No need to keep driving up the cost of treatment by testing everyone each and every month (or every two weeks in my case recently when coming in for my Euflexxa series or other visits besides the regular monthly office appt).
Thank you for allowing me to express my opinion. Having said what I did I do appreciate the good work and INTENTIONS of MOST of the CLADD organization and what they and the US Pain Foundation are doing to help the disabled and end the discrimination we face. As hard as it is for long time patients of doctors and customers of reputable pharmacies to receive care, my heart goes out to those who are still seeking or just have received a diagnosis. In the case of those with autoimmune disease this process can take years.(often filled with accusations, judgments, dismissing symptoms, etc) To finally have found an answer be it by antibodies, biopsy, or otherwise to then be run through a maze of road blocks all the while being disrespected is unconscionable. I see and hear it every time I read threads from my online support group. These patients don’t know what hit them, even less why they are being treated like criminals. I try to steer them to websites like yours as you and other professionals can explain it alot better than I can ever do, I will continue to do so.
Believe me we are good, and my reply was not directed at you – it was directed, in general to the many comments we all hear about big pharma. Some, not all, PROP folks spend their time carefully praying on big pharma and the poor victims of family members who have lost loved ones; and it should come as no surprise, since some of them know just how to manipulate the minds of others when considering their specialty backgrounds. At best, that behavior is distasteful, and at worst perhaps evil.
One of your comments here, “Even a dim addict knows he can take a few doses of his Rx for a couple days before his appointment and quit using any illicit drugs temporarily, easy peasy.” See, not so easy if medical providers were properly trained. My patients will not get away with that because I’ll do a blood level which will tell me not just what they took, but how much and if it’s taken routinely based on the parent compound to metabolite ratio. And “pill count”, no good – for a shady person, a handful of tablets is a text message away. You are correct Coonhound, labs don’t need to be done each week or even monthly. It is individual to the situation at hand. Advertising to the patient that labs will be done is for the most part a waste of time and money. Although I will say that some truly addicted often can’t help themselves and will either show up with a positive test despite their planned test, or will try to beat the test which I will send for validation and check parameters such as specific gravity. Bottom line is that clinicians need more training and should be frugal with money from patients and third party payers so that the legitimate folks get the care they need at a reasonable price with reasonable tests.
Thanks for participating and returning to this sight. All of the pain patients need each other!
Yes Dr I am one who has fallen hard through the cracks ..am a chronic pain. Patient for 23yrs and I’m going through some hard times my Dr stopped Treating pain patients and I’m going through the lowest point in my life .been on
Same amount of meds for 16yrs no problems and I’m legitimately In agony on record can’t find a Dr to put me at least part of the meds I was on instead I’m going through hell my new Dr NVR came in two times on my app date the last time he left me without meds with no on call Dr.did nothing an never been without my meds even at the lowest amount I made them last an suffered seriously considering how long I was on my meds it’s not right I tell my Dr I wouldn’t let my dog go through this an he doesn’t care just keeps me suffering Severely and my life has been in turmoil since.there should be a way to figure out an check ppl obj meds a random, home check on amounts of meds no calls just go an see.IV got a nurse come check me 2x a day 5days a week’s that is since IV been cut drastically and am at the worst fight of my life sick of looking for a Dr that understands IV been through shots ten yrs an everything in between.thanks for realising ppl are abusing selling etc an ppl like me are paying the consequences.Vicky t mass01826,,,,,keep on fighting for our right instead of to stop caring for the real patients…
When I saw the “upURS” comment at the end, it gave me a good laugh! May I say, once again: Dr. Fudin, THANK YOU for your tireless support, advocacy, and blogging to let us non-cancerous pain patients in on the process, the progress, and the victories! Disease-inducing pain is no picnic, but with you and your colleagues helping us, perhaps we will not have to fight so hard for the treatment we need. You are a true blessing to me.
I do hope this will reach some OHIO care providers I have a huge need of a pcp. The one that just left my husband and myself high and dry for our healthcare and meds,reading this is good news but still can’t be excited here in Ohio. I have been told the way he stepped away from our care and needs I find it hard to believe we have no recourse, and the pcp is in the clear,and we get to suffer, facing a surgery with no pcp to follow up care. Just don’t know what I am to do now.
I still appreciate the folks working hard to get these changes.
I really hate to be the dark cloud in a sunny thread BUT I couldn’t myself. While CLAAD may advocate for keeping scheduled medications available for those who suffer from chronic pain let us not forget who is part of this coalition. Big Pharma namely [Purdue]. While I am sure that the safety of their products and the well being of both legit patients and dope addicts are of the utmost importance, one cannot deny that they stand to make quite a bit of money by replacing relatively inexpensive scheduled medications w/ abuse-deterrent versions. Oxycodone (done deal w/ OP), hydrocodone (in the works), etc, etc. They are lobbying on all fronts too. pushing for abuse-deterrent medications to replace most if not all currently available opioids and ALL stimulants,
*Taken from their website: http://claad.org/claad-weighs-in-on-fda-rejection-of-citizen-petition-to-force-reformulation-of-stimulants/
*”CLAAD reiterated its long-standing principle that abuse-deterrent medications are a critical component of a comprehensive strategy to reduce prescription drug abuse ”
[In the following link CLAAD states that such changes should be made compulsory]:
Having no luck with the FDA they are currently lobbying Congress and certainly have a good chunk of change to throw at both parties.
Let us also keep in mind that it is well known that these AD meds are not very effective in their main mission, preventing abuse. Dont believe it? Take a minute and a half tutorial via youtube, https://www.youtube.com/watch?v=LWIDhFZT4G8 add a couple household objects and 5 minutes later- voila OP is turned into a snortable, injectable, edible drug ready for immediate release either by injection, snorting, or plain old swallowing, all breaking the time release mechanism. CHA CHING!
I dont know about others who are disabled but w/out help from family I could not afford pain management as it is now. Replace my meds w/ AD versions and it is a certainty.. Sometimes I think doctors, organizations, politicians and others dont look at the big picture and miss things like cost and the fact that our disease(s), injuries/failed surgeries, etc leave us in need of several medications having nothing to do with pain. (not to mention the tests, numerous specialists, Part A B and D premiums, etc) Due to lupus overlap (MCTD) and sarcoidosis I take almost 20 medications per month (thank goodness they are all not for everyday use but most of them are) SO, when all patients are guaranteed access to their pain medication a good portion will not be able to afford it. As usual it is the legitimate users of such meds (NOT ADDICTS) that will pay the price (pun intended)
Seriously? What do you expect – that Purdue and other drug companies are going to research, manufacture, and employ scientists out of the goodness of there heart without making a profit? That’s absurd, yet a chant we hear over and over again! Sure, it would be nice if everything was free. perhaps in a communist country where you couldn’t own anything that would be plausible, but then pain management wouldn’t be a priority. Ponder this for a minute…
Do companies or manufacturers profit from…
heat and air conditioning?
plumbing and supplies?
Does McDonald’s profit from their fatty meals that help to foster obesity?
Is anybody arguing against profits from lifesaving antibiotics, heart valves, prosthetic devices such as artificial limbs for returning soldiers, canes, crutches?
Would you want your spouse working for a company that manufactures pain medications without coming home with a pay check?
Anybody that makes the argument that companies shouldn’t profit by making pain medications needs to charitably fund patients that need the drugs, or move to another country that has socialized medicine.
Dr and Coonhound:
This is why we’ve gone to great lengths to articulate the right to self-defense against pain.
The moment we divert ourselves away from that principle,
We find ourselves feuding over “Who Should Make My Medicine?”
If the law recognizes my God-given natural right to make my own medicine for myself….
…then it must also recognize the same right, to make medicines for others and to trade them or give them away.
The honoring of that right, creates competition, which limits how high the price can go.
If the law makes it a privilege to control pain, there are no rights for anyone, and favoritism becomes the rule.
It does not matter if the enemy stealing our rights is a communist or a fascist or an islamist or a Scientologist. (If anybody can tell the difference, enlighten me. All I see in any of those totalitarian groups, is pure evil.) Steal our rights and we need them back.
I’m sorry, I also have to agree with Coonhound here on this one. These patients are barely able to afford to the pain medications that they get already because generic meds have already went up near 1000%. Making all of these higher priced, name brand AD medications is going harm more patients than help them. Where I am, I live in Florida. This place doesn’t have ANY pain medications available to most pain patients now. The pharmacies are constantly refusing to fill nearly ALL legitimate prescriptions and when they do? it’s already expensive. $68.00 for 90 methadone is robbery. This medicine only costs pennies on the dollar. WE don’t have a prescription drug problem down here anymore. Maybe heroin that the addicts are doing now, but that’s all!
The legitimate pain patients are suffering already and taking away the generics is the wrong thing to do. I don’t see an epidemic anymore. All I see and hear from are legitimate pain patients and they are suffering beyond belief. The pharma companies are already making a decent living and big bucks too!. People on Medicare are being forced through the donut hole way earlier now than ever. I think all the anti-abuse groups need to focus on the heroin epidemic and leave the pain patients alone. We just need to be able to get access to the medications we already have without paying more money. There isn’t any access to pain medicine as it is here. We have the database and the pill mills are gone! Why continue to always be trying to do more? Florida has already proven that the abuse to prescription drugs can stopped. We have the lowest overdose rate in the country now. Just leave the pain medications we already have as generics and the pain patients alone. It really seems that addicts are getting more care and more attention in today’s world than the legitimate pain patients are.
I just think it’s time that America starts getting back some compassion and starts making sure that access is available for REAL pain suffers. Affordability to all of them.
Plus, Everyone can’t take those polymer AD medicines. There needs to be “choices” in medicine for different pain patients and for the doctors who try to care for us.
I’m sorry but I just had to speak my mind.
I am so happy to hear some good news for a change!! To hear we have so many out there who are supporting us CPP is really heartwarming. I agree with should meet up with the “FedUp” group but I hate to say I don’t look forward to a year long wait to do it, let’s keep the ball rolling while it’s in motion!
“UpUrs” “FedUp” and “USPF” need to do our best at reaching more people and spreading the message that we are sick and tired of being the ones thrown under the bus just because we are not able to get out and fight as much as we would like! We are still strong in mind and heart even if our bodies are not!
Some REALLY good news for a change! You folks are heroes indeed.
As a US Pain Foundation Ambassador and co-founder of the Facebook page, “Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill””, I have never been prouder of the actions of these individuals and organizations for taking on this role of trying to restore Ms. Hamburg’s recognition as the best friend we, chronic pain patients, could have asked for when it comes to the FDA. We simply cannot afford to sit by and let another Fedup rally occur without meeting them head on as a solid force supporting our rights as chronic pain patients. The name you came up with sounds PERFECT to me, both in the meaning of the acronym and its sentiment.
I know that I speak for the members of the “Kentucky Pain Care Action Network” as well as the MANY other groups on Facebook, the internet and in the world at large when I say, “We have suffered enough! Enough pain. Enough humiliation. We have certainly suffered enough from false accusations that we are all drug addicts or, if we aren’t now, we will be soon”. Actions speak louder than words and if they continue to show up and we can’t / don’t, just because they picked on the sickest and weakest of the population, we WILL continue to lose our rights (what few we have left).
Thank you again for your never-ending support of legitimate chronic pain patients, Dr. Fudin. I personally cannot thank you enough.
“Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill”
The FDA has provided incentives to find safer and more effective therapies. As was noted by Commissioner Hamburg and by Dr. Fudin acetaminophen can be deadly as well. Risk/benefit must be weighed with all therapies. Meanwhile we need to continue to work for safer and more effective therapies recognizing it would be immoral to abandon patients who can only afford opioids for treatment. Payers need to step up and help provide affordable alternative therapies but the ultimate goal must be to prevent opioid related disorders while optimizing care for all people in pain. This can be done if there is the will.
Perhaps people in pain should organize their own protest. In fact it may be worth exploring a joint event with AAPMedicine at their March meeting in March. Maybe we could get more professional organizations to join.
That is an amazing idea!!! Clinicians helping patients at a totally different level. Committee? Count me in!!!
Drs, Fudin and Webster,
I see more evidence that the chronic pain community is Fedup too and realizing we have only ourselves to deliver us from our own dilemma. I know this is what we need to do, lacking funding from rich politicians or the ability to organize a massive showing of SICK people has proven difficult to say the least.
One year, we attempted to organize a march on Kentucky’s state capitol. We started out with a bunch of fired up people and ended up with less than 15 confirmed. An embarrassment, not a march. While I do not have a defeatist attitude, reality came into play on this one. I am up for taking it to the street if my legs fall off, but then again, a party of one does not a march make.
See Link for the following page:
“Opposition to Kentucky HB 1-Reform HB 217 aka “Pill Mill Bill”
l agree, direct action is a plausible way for people with pain to make themselves known in a more forceful way.
This is a great idea and US Pain foundation is in the talks of working together develop such an event. We want as many people in the pain community to help us and join us and AAPM on these efforts.