OP-ED: Pharmacist Chronic Pain Advocate Launches Non-Profit

OP-ED: Pharmacist Chronic Pain Advocate Launches Non-Profit

Steve Ariens

Steve Ariens

Steve Ariens is a pharmacy advocate, blogger, and National Public Relations Director for The Pharmacy Alliance. He’s a retired pharmacist who is launching a non-profit to raise money to fund legal challenges to what he and others believe are prescription practices that are not helpful. In this op-ed, Ariens outlines his reasons for action:

Have you ever had to deal with something for so long that you eventually say ENOUGH ! I’m mad as hell and I am not going to take it anymore !!!  How many remember the movie NETWORK ?

While I do not have chronic pain, I have a wife who has been a chronic painer for some 30 yrs. While she is at a good point in her pain management right now, even though I am a Pharmacist, her path to this point in her pain management was not a smooth one.

I have exchanged emails and phone calls with other chronic painers all over the country. Their situations of being denied having their prescriptions filled for various reasons– some of the reasons can be described only as nebulous.

Patients are being discharged from prescriber practices because they use in-office urine testing products that have a known 20% =/- false negative/positives, but the offices appear to be totally ignorant of this fact.

Patients have told me that they have collectively approached dozens of attorneys and none would attempt to take their case on a contingency basis.

Last week I received an email from a Florida patient who had filed a complaint with the Florida Board of Pharmacy (BOP) about a Pharmacist refusing to fill the patient’s legitimate/on time/medically necessary prescription. The BOP’s response was that they considered the Pharmacist’s behavior UNACCEPTABLE.  But no law was broken. Apparently unprofessional conduct must be a very high bar to have the BOP find that a Pharmacist has crossed that line.

A few of us has started a charity to fund the legal expenses of pursuing the inhuman/illegal treatment that patients have to endure.

A website (http://www.painedlivesmatter.com) is now up and running as well as a blog and a Face Book page and a Go Fund Me page.

If we can get less than 1% of those in the chronic pain community to donate $5 – $ 10, we will have a large enough “war chest” that experienced attorneys will be more than willing to consider legal action on behalf of chronic painers.

We understand that the vast majority of chronic painers are physically, emotionally and financially exhausted. Bullies usually target the most meek and weakest among us. If chronic painers pool their meager resources together, we can get some “hired guns” to do the fighting for you.

We estimate that it will only take a few WINS in court to get other attorneys interested in pursuing more cases on a contingency basis. All the people working on this project are volunteering their time; expenses are being kept to a minimum.  We are starting out with chronic painers, pain advocates and some healthcare professionals putting all of this together.

Editor’s Note: The National Pain Report welcomes other points of view on this and other topics pertaining to chronic pain.

There are 21 comments for this article
  1. Shawn Smith at 4:42 pm

    I had similar problems I refused the suboxone unless they would write it off label for cronic pain on the prescription because that is why I was there they wouldn’t do it so I quit taking pain meds and am in so much pain that I want to die

  2. BL at 4:35 pm

    Ginger Diedrich, attorneys will take cases they believe they can win on contingency. especially if they feel it will give them good pr that will lead to more clients. If you couldn’t find an attorney to do this, you case wasn’t as sure as you have been lead to believe it was.

    The study you referenced is almost 20 yrs old and was done in the UK. If patients were dying in large numbers in the U.S. a study would have been conducted here.

  3. InDebtToPharm at 1:10 pm

    I agree and advocate for Steve and ALL pain sufferers! I had three knee dislocations that not only severely damaged my ACL, MCL, and patella frx.. But damaged my life and savings account as well. It started in 2011 due to a slip and fall from store neglaigance in a large BULLSEYE CORPORATION store & ended with me in debt to pain clinic to the tune of $350+ monthly!!! For suboxone treatment !! My knee , not heeled. My neck and spine , getting worse as months go on!! Why am I on suboxone ? Due to a Walgreens pharmacist “feeling” I was prescribed too much norco( 30days worth) that I sometimes picked up on 40th day. However, I’m only 36. Ergo… I should be doing backflips right? According to one bad pharmacist that ruined my following last year of costly suboxone treatments , no pain relief like what I was used to and the depression that followed … Not a wonder I’ve got a suicide attempt now under my belt. The difference is next time I will remember what to make sure I correctly do and what to not forget. Thankyou big pharma for turning my life into an endless cost and addict world when my chronic pain now can’t even be addressed due to the costs of addiction meds and no pain meds. And I just get in from 2 hours waiting at a nice pharmacy because again … A new pharmacist is running around dropping bottles and losing phone lines… Wow. So, who are the fools ?

  4. Ginger Diedrich aka ginbug at 12:09 am

    BL-There are studies & research coming out now that is showing that pain meds are very much life sustaining!! Untreated or undertreated severe chronic pain can cause all kinds of damage to the brain & even cause organs to shut down!!
    While not everyone will have complications from being forced into withdrawal or commit suicide, though many will; how can a pharm. tell who will & who won’t? They can’t!!!
    I did NOT have ANY heart or bp problems at all, when I was forced into withdrawal shock that stopped my heart twice & caused my stroke!!! So your “theory” holds no water!!

    So like I already stated below, pain meds. are just as life sustaining as bp meds. & insulin!!
    Steve is COMPLETELY right about patients that are denied meds. are EXACTLY the same as when a patient is given the wrong meds. as they can have the exact same outcomes, which is a patients’ life is put at risk due to NOT having the meds they need!!

    BTW- EVERYTHING I have stated IS backed by medical research & extensive studies & NOT just what I think or heard!!
    Also, I could have sued the pharm. that refused me for no reason; but could not afford the lawyer fee!!! As this problem continues, wait & see, the lawsuits are going to start rolling in!!!
    Here is just 1 link, let me know if you want more!
    http://updates.pain-topics.org/2010/04/severe-chronic-pain-is-killer-study.html

  5. Jamie at 8:54 pm

    BL may I ask if you are a medical professional? You speak of what can be or has been put on a death certificate. You also state you are sure of what cessation of opioid medication does and does not do to the human body. So please tell us what your credentials are.

  6. Pharmacist Steve at 5:18 pm

    Chronic pain pts are TWICE as likely to commit suicide.. so you think sending the pt away from the pharmacy counter with the WRONG MEDICATION than was prescribed and sending the away WITHOUT the medication that was prescribed is not the same thing ? In both incidents.. neither pt has the medication that was legally prescribed to them..

    http://www.news-press.com/story/news/crime/2014/09/08/death-investigation-at-groves-rv-park-in-fort-myers/15280035/ – 2 seniors committed suicide

    here are just a few of the posts on various FB sites that I have collected

    A husband and wife were found dead at their trailer Monday at the Groves RV Resort on John Morris Road, apparently the victims of a murder-suicide.

    The Lee County Sheriff’s Office responded to unit #100 in the resort at 16175 John Morris Road at 8:30 a.m. Monday.

    The sheriff’s office report said the response was in reference to a male caller advising the LCSO that he and his wife “could no longer stand the pain and that they were leaving.”

    We SHOULD BE spending our time trying to take care of our pain !!! I don’t think heroin addict’s spend that much time running around looking for it on the streets !!!
    I ALMOST HAD TO go that route … Because of WAY Too much pain … With absolutely no pain relieving medication Better off …going to the streets eh ???
    No judgements or rationing on the streets !!! No wonder we turn to the streets for our necessary/life saving medication !!! Is that their agenda ???
    Or just wait till we kill our selves because the pain is too bad ??? Kinda like genocide by suicide ?!?! It’s just unacceptable !!!

    Just can’t do this anymore

    I am done. Fed up of pain. Fed up of drs and people screwing my life up. Making me live in agony for no reason when they have the power to help. I only ever go to hospital when there is no other choice, when I am in a full blown life threatening crisis. I only ever cry out for support when I am at the end of my rope. But now that rope has snapped. Can’t keep asking for help and support and being rejected by everyone again and again. It is in humane to be in this much pain, it is cruel. I don’t know how much everyone expects me to deal with all the time but I am DONE. I am not living like this anymore.

    I’m about done with living. This isn’t living and I hate the quality of so called life I have. This whole thing has thrown me into a fibro flare on top of my back pain. I hurt so bad now I want to die.

    This is a debate question. Not a plan of action !!!! When is it okay to give up? When is it okay to want to stop this constant pain? My wife says it’s selfish for anyone to contemplate taking their life but I think it’s selfish to make someone live like this Every day …..day after day after day. Today is not a horrible day. Today is an okay day. This is a debate question. Not a plan of action !!!!

    Maybe I shouldn’t ask this, but I’m absolutely at my end. Feel free to message me if you don’t feel comfortable here. I need pain meds, BADLY. I can’t go on much longer this way. I contemplate suicide daily. I’m not a good mother. Or wife. Or friend (which I’ve lost most because the pain makes it unbearable to go out and be social). I can’t work much anymore, which is putting a huge financial and mental/emotional strain on my poor husband. I can barely keep up with my housework either. I feel like a 30 year old failure. My doctor took me off of the one thing that helped me, tramadol. Since then I’ve rapidly gone down hill.

    I bet no one would care if I died, so why not get it over and done with, I mean no one wants to help me. So why bother with life. I’m in agonizing pain daily. Im a looser now and always will be and I drive people away so dont bother being my friend because ill probably make u hate me like I do with everyone else.

    My wife has really been struggling in the last few months. This month has especially been difficult. She has stated many times that her fibro is getting worse. She has ran out of her pain meds and became very depressed. Yesterday she tried to kill herself. I found her face down on her bedroom floor. She had overdosed on other medications and was barely conscience. Ambulance took her to er, after 5 hours a private room. She finally became alert at 11pm enough to answer questions. She was transferred to an ICU last night and today at 5pm transferred to another hospital to deal with the depression.

    I know it is heartbreaking to miss these things and see the disappointment on their faces and people and family want to judge me because I have decided to end my pain on my dad’s bday and are making preparations to do so then I do not have to face begging doctors for enough ends that don’t even touch my pain and be treated like a criminal because I have multiple health issues. I give up

    http://www.infowars.com/i-am-sorry-that-it-has-come-to-this-a-soldiers-last-words/

    This is what brought me to my actual final mission. Not suicide, but a mercy killing. I know how to kill, and I know how to do it so that there is no pain whatsoever. It was quick, and I did not suffer. And above all, now I am free. I feel no more pain. I have no more nightmares or flashbacks or hallucinations. I am no longer constantly depressed or afraid or worried

    I am free. I ask that you be happy for me for that. It is perhaps the best break I could have hoped for. Please accept this and be glad for me.

    I have a family member who has been in excruciating pain for years, surgeries and injections made it worse. The only thing that gave him the slightest relief was methadone. Well, insurance changed their rules and would not pay anymore, so they have been paying out of pocket. Sunday night he snapped, couldn’t take it anymore and took his life. Why am I telling you? His family is falling apart.

    Hey everyone, I am xxxxxx, 33 years old RSD both legs from thigh to toes, spreading to my hands and calves. I am the most depressed I have ever been, I lost my job, Im a nurse, nothing bad, they were just ridding themselves of Per Diem nurses so I took that hit. I am a single mother of two beautiful girls, 4 years old and 19 months old. My car is about to die, my pain is incredible and nothing seems to work,my hair is falling out root to tip in clumps, I cant stop crying, all I need is a hug. It is so hard to wake up every day and be in this horrific pain. Im out of options, I don’t have any fight left in me,im done with this.

    i am seriously considering participating in Doctor assisted end of life ..reason i can’t take this pain anymore.. It’s not fair for my wife to see suffer on a daily basis.. we don’t have children.. I understand such bill is directed to terminally ill..I will find a mental health provider who will support my decision.. No body cares!.. I reach out to the medical community they use me for $$$ i am referring to surgeons and the legal community could care less.. I guess my ethnicity as a latino in spite of my american heritage is not worth the effort.. It’s not just the arch problem i have a torn theal sac and my orthopaedic surgeon has abandoned me completey.. Sure my wife’s insurance has made him rich along with my medicare due to Permanent disablity.. let’s face it.. the medical and legal community would see me as a total loser..If i hit the lottery or had resources life would be totally different in spite of my pain..I am sick and tired of the bullshit and pain that i endure each and every day…

    Last night a 19 year old friend from Key West died. Pain medication overdose how sad.

    http://www.rawstory.com/rs/2014/11/mich-medical-marijuana-card-holder-commits-suicide-after-police-witch-hunt-over-pot-butter/

    This weekend has been awful. I lost 2 good friends. One died of a heart attack and the other committed suicide pain level is out of the roof

    I just want to die, then I will be in peace no more pain!

    Have anyone of you got to the end of the rope and want to let go. No more pain, i wouldn’t in my wildest dreams wish the amount of pain im in on my worse enemy. There is days i pray for god to end it. in sick and tired of being sick and tired. all the meds im on even meds for depression are not helping.i cant sleep, sit, stand, walk w/o being in major pain. i need help i cry myself to sleep the nights i do sleep. im at my max by the DEA law idk what else to do

    Sxxxxx hung herself Christmas morning. She could no longer take the pain. She tried for a year and a half. She lost her job and had to move in with her son. She spent her last months home bound. She was very scared and alone. The pain was bad enough where she needed help getting into the bath…
    Everyone please think of her today. This could be any one of us….
    How much can you take? It’s not like she could put the pain away in a drawer for a while. She couldn’t just take a vacation from it. It caused her daily severe panic and fear of leaving the house…Or thinking of the future. She left no note … 12/28/2014

    My late wife Karen lost her battle to Chronic Pain via suicide. I’d like to find out more about the (Cake) movie?

    There was also a couple of prescribers in CALF that was sued for failing to provide pain management for end of life pts.. and the plaintiffs were awarded one million + each.. I can’t put my hands on the exact information.. but they weren’t found guilty of malpractice but irresponsible professional negligence..
    All I know, that IMO.. it will happen.. and if I am aware of it.. I will be on the plaintiff’s side of the court room and willing to testify PRO BONO about denial of care and the Pharmacist will LOSE.. and their corporate employer will not even show up … because they have told all their Pharmacists that it is their decision. so when they get sued.. it will be THEIR LAWSUIT.. not the employers.

  7. BL at 4:18 pm

    Steve, giving a pt the wrong medication is not the same as not giving a pt a rx.

    Please post links to cases where a dr or.pharmacidt has been successfully sued due to a pt going into withdrawals due to not having pain medications.By successful i mean the pt or their family won the law suit. Based on what youte claiming there should be a large number if that many pts are being denied their pain meds.

  8. Pharmacist Steve at 12:08 pm

    BL… you are referring to “corresponding responsibility” and few want to admit that that is a two way street.. the DEA is only concerned about the wrong drugs getting into the wrong hands.. that is their statue authority under the Controlled Substance Act of 1970.. No one seems to care if the right drug does not get into the right hand.. If a Pharmacist mis-fills a Rx and gives the wrong medication.. that is considered malpractice… If a Pharmacist refuses a legit/on time/medically necessary Rx to a pt.. why is that not also malpractice.. after all the pt did not get the medication that the prescriber wrote the Rx for. The starting, stopping, changing a pt’s mediation is the practice of medicine… while you may be a PharmD.. you don’t have prescriptive authority, nor do you have the authority to provide a second opinion diagnosis. Your statement “what I’m saying is that pain meds are not.in the same class as Life Sustaining Medications” IMO.. clearly shows you inexperience or lack of clinical experience in dealing with chronic pain and/or other pts with subjective diseases.. When you cut off/deny a chronic pain pts that is physically dependent on a opiate and they go into cold turkey withdrawal, has a hypertensive crisis , stroke and dies.. and you are charged with at least involuntary manslaughter… don’t be surprised.. you profess to be a “drug expert” … then it will be hard to defend in a court of law.. that you did not know the consequence of cold turkey withdrawal for a pt.. Not to mention the civil lawsuit from the family of the chronic pain pt that died..

  9. BL at 3:30 pm

    ginbug, what I’m saying is that pain meds are not.in the same class as Life Sustaining Medications. The reaction some people may have to not having.the medications is due to othet health problems and not just not the pain meds. Chronic pain or lack of pain meds has never been.nor will it ever be the primary ot secondary cause of death on a death.certificate. If changes are to occur they must be based on medical evidence and not what someone thinks or says.

  10. Ginger Diedrich aka ginbug at 6:35 pm

    BL_ Are you kidding? Pain meds are ABSOLUTELY LIFE SUSTAINING for severe chronic pain!! Not only do many pain patients that need them & cannot get them, commit suicide; but studies show that those that suffer long term untreated severe pain, can actually have their bodies to start shutting down!! Not to mention the huge danger to chronic pain patients that are FORCED into withdrawal which can have catastrophic outcomes! I myself ended up in ICU for over week because I went into withdrawal shock in which my heart stopped twice & I had a stroke!!!

    I want to fight for a law that would make it illegal for a pharm. to refuse to fill a legit & verified RX without a very good & provable reason!! If they are going to put our lives on the line, then it better be for a good reason!!

    What is the difference between a bp meds. & pain meds.? Neither cure anything; but both are life sustaining for chronic conditions!!

  11. Deb Moore at 4:31 am

    thank you, thank you, thank you. as you said most of us are just too beat up to even try to do anything about what we have had to endure.

  12. Ginger Diedrich aka ginbug at 2:25 am

    BL, Maybe for YOU pain medications are not life sustaining, but for many of us, they are!!
    My nephews dad killed himself because his doc. decided that she did not want to deal w/ all the bs of the dea to continue to treat his severe MS anymore!!
    There are also studies showing that pain can kill you if it goes untreated! If you suffer severe enough pain for long periods, it can cause your body to actually start shutting down & they are also seeing chronic pain patients that have suffered long term uncontrolled pain, to continue to hurt even if what caused the original pain is fixed/cured!

    The biggest risks to our lives is when a pharmacist refuse to fill a legit & on time rx for a pain patient that is on high dose long term opioids. Being forced into withdrawal can & will kill us and/or do great harm!! This happened to me when after 10+ years of going to the same cvs where I was on the same meds w/ the same doc for 5+years to be told out of the blue, that they could no longer fill because my doc was in the next county over & they could only fill for docs in a 5mi. radius!! (there is only 2 docs & 1 dentist in that 5 mi. radius, neither are pain docs!) So after trying all the pharms. in my small town w/o success, I ended up in the er after going into withdrawal shock, where my heart stopped twice & I ended up having a stroke that damaged my eyesight & short term memory! I was in the ICU for over a week & was treated by one of the docs as if I was an addict, who tried to make me go into a rehab!! Thank God my doc. was able to intervene & have me transferred under a new cardio. doc that actually read my med. records!!

    So to say that pain meds are not life sustaining is COMPLETELY wrong as they are every bit as important & needed as any other med that any patient needs to live!! There is ABSOLUTELY NO DIFFERENCE between pain meds. for chronic pain or bp meds. for chronic high bp or even insulin for chronic diabetes; none cure the cause, but ALL are needed to sustain life & manage chronic, incurable conditions!!

    You are right about 1 thing & that is that we need the law to change for the benefit of all! I would like to see a law that makes it illegal for a pharm. to refuse to fill a legit, on time rx for a legit & compliant patient unless there is a very good & provable reason as to why it should not be filled!! With all the tools & info they now have that can be used to make sure every patient is legit. & compliant, there is NO REASON that they should be so afraid to fill!!! To refuse to fill a legal, legit, & verified RX for a legit, compliant, verified patient, just because their doc is not in the same county as the patient lives, should be illegal because the doc is licensed in fl. & therefore his rx is valid & legal to fill ANYWHERE within the state!!!

    ALL CHANGE BEGINS WHEN 1 PERSON STANDS UP & SHOUT ENOUGH!!!!!

  13. kathy hastings at 7:52 pm

    Laws can be changed and human rights can be acknowledged changing the laws!

  14. Payne Hertz at 5:57 pm

    There is only one reason doctors and pharmacists deny pain medications to those who need them:

    Because they can.

    The only way to prevent doctors and pharmacists from denying pain treatment to people is to make it so they can’t.

    It really is that simple.

    Going after the DEA or tilting at windmills is not going to change the fundamental power differential that results in people being denied the right to treat their own pain.

    We need to not only end prohibition, but eliminate the control the medical profession has over pain-relieving drugs and make access to pain relief a fundamental human right that cannot be abridged by the whims or casual cruelty of doctors, pharmacists or insurance companies.

    In my opinion, this is the only thing worth fighting for. You are not clear exactly what your organization’s agenda is other than trying to bring lawsuits (against who, exactly?). Do you intend to fight prohibition and fight for the right of people to treat their own pain without a permission slip from a doctor? If not, count me out.

  15. Fee at 3:36 pm

    Is the author on Twitter by any chance? If not I would ask him to join, I found this article from the Nat.pain reports twitter account after all, and there’s a huge group of patients and patient advocates on there. I would love to be able to contribute to this in some way besides just monetarily. I’m only 29 years old but having been on opioid medications since the age of 5 to varying degrees, I feel I have a unique and substantial degree of experience and knowledge on all of this. Anyway Good luck, this is great!

  16. Kathy Hastings at 3:16 pm

    Interesting comment “BL”….just love when people are so bold with comments, yet, refuse to use their name. I consider that cowardliness and trying to be a bully. We would rather try and shake loose the low hanging fruit, resulting in change in the way legitimate chronic pain patients, hospice patients, special needs patients are treated and serviced than not challenge the same ole, same ole!

  17. Kurt W.G. Matthies at 3:16 pm

    “All I know is that first you’ve got to get mad. You’ve got to say, ‘I’m a HUMAN BEING, God damn it! My life has VALUE!’ So I want you to get up now. I want all of you to get up out of your chairs. I want you to get up right now and go to the window. Open it, and stick your head out, and yell, ‘I’M AS MAD AS HELL, AND I’M NOT GOING TO TAKE THIS ANYMORE!’ I want you to get up right now, sit up, go to your windows, open them and stick your head out and yell – ‘I’m as mad as hell and I’m not going to take this anymore!’

    Things have got to change. But first, you’ve gotta get mad!… You’ve got to say, ‘I’m as mad as hell, and I’m not going to take this anymore!’ Then we’ll figure out what to do about the depression and the inflation and the oil crisis. But first get up out of your chairs, open the window, stick your head out, and yell, and say it: ‘I’M AS MAD AS HELL, AND I’M NOT GOING TO TAKE THIS ANYMORE!'”

    — Howard Beale, played by Peter Finch
    Network
    Written by Paddy Chayefsky
    Directed by Sidney Lumet
    MGM / United Artists, 1976

  18. Katt at 2:39 pm

    Exactly BL, & that’s what needs to change. A pharmacist shouldn’t be allowed to deny a doctor’s prescription. (Nor should a Gov’t agency be allowed to bully a pharmacy into that position) The Congressional Hearings to investigate the DEA are sorely needed, pain does kill, while the blame-game continues.

  19. Roberta Rodgers at 1:38 pm

    i would make a great speaker for you

  20. BL at 1:00 pm

    Federal law states a pharmacist can use their professional judgement and refuse to fill any rx. Pain meds arent life sustaining medications. Many people think they are, but the medical fact is they arent.

    This fund is a good idea but the law is on the pharmacist side.