‘Opioid Refugees’ Keynote Topic at PAINWeek

‘Opioid Refugees’ Keynote Topic at PAINWeek

The stories are widespread and persistent: pain patients being denied opioid medications by pharmacies or being left untreated by doctors.

We’ve written about it, many times, and readers like Carla Teegarden have lived through it.

“I did everything they told me to, suffered the embarrassment of pain management where you sign contracts, get your photo taken and drug tested like a criminal,”  said Teegarden, a fibromyalgia sufferer who shared her story after reading Colleen Sullivan’s column about being humiliated by a pharmacist.

“I had my primary care doctor who has been treating me for close to 30 years dump me because he ‘didn’t know what to do for me’. He didn’t want to be bothered.”

gI_76095_pw.icons.logoPhysician abandonment is a sensitive topic in the medical community, but it’s not one that’s being ignored. It was the subject of the keynote address by Steven Passik, PhD, at PAINWeek in Las Vegas, a national conference attended by 2,000 practitioners in the field of pain management.

Passik calls pain patients who are unable to get treatment or get their prescriptions filled “opioid refugees”.

“Its not an easy subject to research and you have to read between the lines a little bit,” Passik told National Pain Report. “It’s not like its all over the medical journals, patients getting turned away and, I hate to use the word, because its a very charged word, but abandoned.”

Passik, who is a pain psychologist, has treated some of those “refugee” patients himself. Some crossed state lines to see him at his former practice in Tennessee, to get the opioid prescriptions they couldn’t get in Kentucky. He says many were fearful, including one cancer patient who worried her pain would go untreated after surgery.

“Should people in 2013 be worried about having to have a surgery, particularly a cancer surgery, with fears they won’t get their pain treated afterwards? She actually considered not having the surgery because of her concerns about that,” Passik recalls.

He says the problem stems from “hysteria” created by the surge in prescription drug abuse and painkiller overdoses that began in the 1990s. Two epidemics, one in pain and the other in drug abuse, wound up being treated with the same solution: reduced access to pain medication.

“The problem of opioid overdose and diversion and abuse got so big, so fast that people felt compelled to act. And in some instances, in my view, they came up with simple solutions to complex problems,” says Passik.

One such solution was dose limits on opioid prescriptions, which have been implemented in states like Washington and Ohio. Patients who need higher doses must consult with an expert on pain medication.

Steven Passik, PhD

Steven Passik, PhD

“On the surface it looks like a very good thing. The doses that are being prescribed are lower, there have been fewer overdoses and it sounds like a win-win. But do we really know if people are getting their pain treated? Are doctors keeping their doses lower simply to avoid having to get expert consultations?” asks Passik.

“It makes you wonder. Are legitimate people who need pain medicine, sometimes in outlier doses, are they able to get them anymore?”

Getting pain medicine is often a struggle for C.C. Carr, a Florida resident and retired veteran, who wrote to National Pain Report last month about the problems he has getting prescriptions filled for fentanyl patches.

“I am stared at and certainly ridiculed over this but there is nothing I can do. People can go and get on welfare and spend it all on the illicit drugs of their choice at the taxpayers expense, but as I have never broken the rules, I am treated like a fiend and a drug addict looking for a fix,” says Carr, who has degenerative disc disease, fibromyalgia and has been in continuous pain for 10 years.

“I just wish doctors and pharmacists would learn that not all people on pain meds like having to use them, but have had to accept this fate. And are neither abusing them or selling them either. Some of us just want to be accepted and understood.”

It’s not just patients being viewed with suspicion. Kathleen Lundman wrote to tell us that a Walgreen’s pharmacist second-guessed her doctor about the prescriptions he gave her for two pain medications.

“The pharmacist said that he needed to talk to the doctor because of the high number of pills prescribed for me. He also said that he needed to find out the diagnosis for my condition!” said Lundman.

“I felt bad for my doctor having to convince this guy that I was on the same meds and dosage for years, and have been on time for doing everything else that was required by his office. He is a pain specialist and is well respected in the medical world. He’s also written three books on pain management. When did the pharmacist become the person to make decisions over the doctors?”

Steve Passik says he won’t criticize Walgreen’s or other pharmacies for taking steps to protect their business. But he says it’s one of many things that discourages doctors from taking on pain patients who are difficult to treat.

“At one point do you reach a conclusion that this is too much of a hassle and I’m not going to do it?” Passik says. “And what happens? You get a doctor not willing to write scrips for a particular patient.”

“The thing that bugs me about it the most is that pain patients don’t really have a voice. They have a voice in your publication, but they don’t go to hearings, they don’t get on airplanes to fly to Washington for some comment period. They are people feeling unbelievably stigmatized, unbelievably isolated, and they’re depressed already. I just think they don’t really have a voice in this.”

Authored by: Pat Anson, Editor

There are 14 comments for this article
  1. Stephanie Gamez at 10:36 am

    Oh all the posts just sicken me to know people with illness are not being treated. Very sad and Obama should be looking at this problem because it is a very serious one and we will have more suicides. Many of the overdoses are because Many doctors have prescribe too many pain meds along with anti depression medicines that those poor people lost their job because Doctors are not able to spend the time and give the medical service that is needed. For example the VA Hospitals in which is one of largest in the country had an increase of overdoses from pain medicine . One of the overdose patient was taking 8 pain medicines along with depression meds. With the people coming back from the war have many issue and the VA system is so back log the Doctors don’t have time to spend with patient and get them on the right track of meds to begin with. My husband has gastroparesis along with many other illnesses and he is housebound and in wheelchair. Any the illness he has is when he take his pills or meds it taken up to 72 hours sometimes for his food and meds to digest .We move to Seattle 15 months ago and my husband Dr, was aware of how he was throwing up his meds and food or it would take maybe two days before his morphine extended release 30 mg 3 times a day and he would get it to effect him all at once and he thinks he can walk and he get up and always falls and than he goes into an overdose and he had been taken to non VA hospital and the Dr. said there said it was a morphine overdose and he should not be put on extended release morphine because he can die from it. He said see PCP when he gets out and let him know you got to come off this meds. We been asking for the liquid morphine since we moved here and that would keep him from getting too much. Well his Dr. kept him on the same meds and he said he will work on getting him on liquid meds another 6 month went by and my husband had many more close calls of going into an overdose again and he did again 4 months ago and he went ER Non VA because the hospital that is closer because he could die. Well again the ER Doc said the same thing he has to get off that extended and get in the day he get out of the hospital . Back at VA and this time I was really hot a very mad I almos tlost my husband 3 times because this Dr. would not change his med. and that was the only pain he was on and 5 depression meds. His Dr, said he going to consult with othe rDr’s. to see what would be best and he gave my husband the morphine again. When i got home I took my husband off all the depression meds because for 16 weeks he stayed in his room staring at the wall and did not want to come out and eat. I called his Dr. every week and let him know this is till going on and he sends him more depression meds and I would not let him take it. Anyway sorry so long but I had to contact Washington DC office for Veterans. State of Washington Dr. Complaint and I send to head person at VA Seattle and the next day his Dr. called and I told him he killing my husband and fully ware from the other Dr.’s he can’t take that kind of morphine and he said well I want to talk to your husband and I said he does not want to have anything to with you and lied to him and you neer did what you suppose too a year ago and he almost lost his life 3 times and now he afraid of you and I told him I turned him in to the Board and the VA and many other got my letters and I told him I will be his nightmare for the rest of his life because I am not going to drop the case against him now and the VA hospital and we got a lawyer that took my husband case on right away and we don’t pay unless we win. So that Dr. took my husband finally off his morphine and gave him nothing else for his pain and the withdraws were horrible he been on pain meds 14 years and they shut him off cold turkey and we ended up twice in ER again and they gave him med in ER but could not give him any for home he and to get from PCP. and the Dr said he should be in a hospital setting so they can take care of him because he is a very sick men and they should of ween him off. Anyway now we have the ball rolling they got my husband housebound and the nurses and the team of Home health have been wonderful and I did survive his detox and now he is on tramdol and pregablin and he doing better mind wise and he does go days with pain but better control. I am a amputee as of this May and I been very sick for 4 years and I was given so much pain meds that I did not realize what it was doing to me. I was on 30 mg of morphine 3times a day. 15mg of oxycodene up to 8 pills a day and than i take Valium 1omg 3 times a day and yes i went crazy and again my doctor gave me way too much pain meds and this was way before amputation. I took myself off all of it but the Valium and I taking Tramdol and it helps but day i can’t handle it and i do now have 5mg of oxcodene to take as needed. I live in Washington state now for 2 years and before Portland Or and they passed pain meds out candy so I think maybe it the state also. They are now cracking down here. Just amazing how there is not a system in place to where people that really need them are not treated like you guys have been treated. I have never experience that because I was given way too much. However I picked up my meds up at Costco and they questioned me on why I am taking certain meds for and I thought they were only doing it so they has reference and I just started using them a month ago but now i think after reading post they might of not given them to me but they saw me in wheel chair and no leg and gave me my meds. Not only suicide but more people going crazy like me and I feel that breakdown coming on from all the stress because of getting pain meds.

  2. Janice Reynolds at 8:06 am

    Thank you Dr. Passik; excellent article. It is articles of this nature which should be in the general media (although that won’t happen as scaring people about opioids is much preferable to telling the story of people with persistent pain and the travels they are put through. I spent many years as a certified pain management nurse before developing persistent post craniotomy pain and I heard and experienced many negative responses to people in pain from physicians and nurses. Can’t even count the number of times someone said to me “It isn’t all about pain you know” or made some disparaging remark (to me of all people) “she likes her pain medicine a little too much” There was a recent study which showed patient safety is compromised when health care providers disrespect patients. Unfortunately many of these pharmacists epitomize disrespect.(as well as many other health care providers endangering patients with disrespect). I never asked for pain; would love to not have it; do not like taking medications however that is how I am able to function!

  3. Karen at 10:44 am

    Just when I hought I should write a book … Ive been collecting stories from FMS patients on their own Doctor, Provider, Pharmacist, Insurance Company, Family, and Friends experiences

    I can say Ditto to all of the above. FMS since 2000, I suffer all that comes along with it plus degenerative arthritis and a list of other problems. My neck has been in miserable pain, but I could not get help. I had worked hard for months to DECREASE my opiods, fearing future surgeries and uncontrollable pain. Then the Cervical Radiculopathy set it, I needed to have 4 vertebrae fused. Pain in the night messed up my restorative sleep. Do you think I could get more pain meds, to combate the greater pain? Noooo!
    ive fought tooth and nail, made a pest of myself, sufferig terribly. What if I was an 85 y o widow, trying to do all this crap? Im only 56 but disabled, and its a battle all the time. NowmI’m probably Red Flagged in the Clinic Computer System, and Walgreens as well. To be treated as ‘drug seeking behavior’. I finally got an IM NSAID injection I had a friend do, and prednisone to reduce inflammation. Did take the edge off, but it omly lasts 5 days. So, back to the battle field …. wish I had time dor a life.

  4. cyndi at 7:00 pm

    First the doctors didn’t believe we were in chronic pain and had to fight to get half decent medical care. Then they started cutting back on how much medication you can have, then they went back to the old way because they weren’t treating us correctly.

    Now we have to fight with the pharmacy to fill our medications prescribed by the same doctor I’ve had for ten years???
    How can a pharmacy make a decision not to fill my prescription when my doctor has been treating me for ten years? It wasn’t a new rx, I get the same amount every month!

    As far as I am concerned, what is happening is criminal, and I think someone should be held accountable to all those patients being harrassed.

  5. kathleen marxson at 5:04 pm

    I suffer daily from chronic pain due to osteoarthritis of both knees..I have not had qualify of life over3years. I have no choice in this disease I did no ask nor want to suffer as I now do .I too have been treated very badly more by the Dr.s I have been to a the very dr.s that putme on opioids have also completely abandoned me. Treating me sub human to say the least. and the Pharmacies are NO better I deserve to be treated with utmost respect from the very same professionals that are supposed to treat my agonizing pain I’d love to see any one of them in my position.I wonder if maybe then they would understand.God forbid it should have to be that extreme. Try to walk etc. With bone on bone grinding,rubbing,swelling stiff ,horrific pain waking up all nite god forbid to have to try to get to the bathroom at night all stiffened and sore Please stop this madness now.

  6. k at 10:02 am

    i TOO need someone to help me. My family abandon me for no reason, knowing i have this debilitating pain for 7 years. My ex put me through hell n cost me to lose my car, i have been waiting for disability since i was no longer able to work last summer and my family promised to help me until i got it, then just abandon me with no car no money, NOTHING. they knew i had NOBODY else no car, no help and to this day are blaming ME for it?? it is crazy. the only reason i can come up with is they have some weird phobia or just dont want to be aruond someone who is in pain 24/7 and cant do things i used to be able to do. I am now about to be thrown out of my apartment, with nowhere to go all my stuff will be thrown on the street as well as my cats. i wake up this morning to a message from my mom saying “get over it” LOL i am in twilight zone i dont understand how someones own family can do this to them.? i have been begging for help from strangers nobody will help me and i am finding it pointless to even be alive anymore. this is really a nightmare and to this day i do not know what i did wrong. this pain has ruined my life and now took everyone who i ever cared about from me. And to this day i am being treated like a POS when i did ALL ICOULD FOR 5 years in excruciating pain worked a physically strenuous job in tears daily suicidal daily and now abandon by my family as soon as im FINALLY about to get help , my sister is EVIL.

  7. Kristina Schwende at 4:52 pm

    It is criminal the way pain patients are being treated. I don’t understand how this can be allowed! I too have been questioned and badly treated by doctors, though thankfully not by my pharmacists. I don’t understand how a pharmacist has the right to override a doctor’s prescription! We are not junkies, we are people living with debilitating pain. My pain meds don’t make me high, they make each day bearable… barely.
    Most patients are not physically capable of fighting for their rights (myself included). We need someone to fight the good fight for us. Who is willing to do that? Thankfully, there are a growing number of advocacy groups who are fighting for us.
    We would never consider allowing an animal to suffer in pain, yet it appears to be OK for people. This must not be allowed to continue.

  8. k at 11:18 am

    RIDICULOUS ! I cannot believe nobody has done anything about this yet. i have been through it for 2 years now,.and it is beyond sickening. Just praying something is done about this before they do it to my father who was just diagnosed with cancer!

  9. Kim Manley at 11:15 am

    This situation with being unable to fill opioid medications has gotten so out of hand it is pathetic. I understand there is an epic problem with illegal drugs in this country , however I am not a part of that problem ! Yet I am treated as though I am. I have chronic debilitating Rheumatoid Arthritis in my hips ,knees,and hands. Without pain management I suffer constantly. My Dr is wonderful and thorough . The only thing standing between me living in constant agony or being able to tolerate my pain is the pharmacists from Florida Walgreens among others. I have never misused my meds. I used Walgreens for 3 1/2 years with no issues ,until one day 1 1/2 years ago when I was told “We can no longer fill your opioid prescriptions”. Since then I have been forced to go from pharmacy to pharmacy armed with my medical and prescription history and BEG to fill for me. I have run completely out 3 times since January and today it has been 8 days without any type of painkillers ,which means not just being in agony ,but also suffering from heart palpitations ,high blood pressure,insomnia,stomach cramps,and chills from being forced to suddenly stop the meds i have been on for 5 yrs. And to top it off I am a 55 year old college educated homeowner,tax payer,and registered voter,yet I am treated like an addict and criminal at every single pharmacy I approach. As of today I have been to 21 pharmacies to try to fill my meds. When does the insanity stop ? How many people have to suffer or die ? I have been lied to by so many different pharmacists I will NEVER trust a word any of them say . I wish to God every single one of them would be held accountable for their lies. Perhaps that would stop this madness…

  10. Christina R at 11:10 am

    Another problem the DEA are not paying attention to is the amount of money private pharmacy are charging pain patients. Not excepting there insurance for pain medications and turning it around to were it seems like the pain patient are choosing to pay cash. This is wrong on so many levels and needs attention and action. I dont understand why its so hard to find pain medications after a tracking system has been created. I think the way pain mangement is done should be changed. After you have seen a specialist and tried to help your pain and there is no more options to offer then you go to pain mangement. Im not talking about injections at all they are not FDA approved but

  11. beebea at 9:18 am

    I have had a pharmacist refuse to allow me my pain meds for literally 5 business days bc she refused to believe I was disabled and in pain… She held my script hostage and refused to fill it for 2 days after she received confirmation that it was the right med and dose… She made me feel like some junkie looking for a fix… Meanwhile I’m only 26, have DDD, ( spine disease) and facet joint disease, along with osteoarthritis throughout my body, I haven’t been without pain since I was 15. I am off all meds now and suffer greatly for it, but cannot put myself through another attack such as the one this pharmacist unleashed. I feel as though I’m being judged for using pain meds because of my age, and cannot get past the pharmacists inability to accept that there are young people who are suffering, not just looking for dope to get high.

  12. Karin Aubrey at 8:39 am

    I have a form of osteoarthritis that causes bone spurs all over my body. My neck has deteriorated to the point that I can HEAR my bones grinding together when I turn my head. There is no way I can even function without these meds. I get up in the morning early because I am in pain. I take my long acting pain medicine that is supposed to last 12 hours, but obviously does not because I am up early, LESS than 12 hours since my last dose. I take a Goody’s powder to get rid of SOME of the stiffness. If I am still hurting in an hour, I take an immediate release medicine to bring my pain down to a level that I can tolerate. So, within about an hour of getting out of bed I have taken three medicines that are supposed to relieve pain. Some days I am in so much pain ALL day that I am unable to do much of anything physical. Some WEEKS I have flares from fibromyalgia and I am unable to go without taking the immediate release medicine through out the day. On those days, my pain level is too high to be able to even walk down my stairs to check the mail. Try to imagine being in a roll over accident where you are thrown around and bruised all over. That’s what my body feels like. One GIANT bruise! Now, without the pain medicine, I would feel like that every single day with no relief. Does my medicine help? Yes! Absolutely! Do I get high? NO! Absolutely NOT! Could I be functional without these meds? NO WAY! My pain management doctor and I spent 7 months trying all the other non-narcotic meds out there to get me some relief. None of them worked. All I can do is hope that they will come up with something that my body will respond to, other than the pain meds I am now taking.

  13. Arenda at 7:09 am

    I suffer from RA and have been on pain meds for past 6 years. i was recently made to feel by my Dr that I should not be in so much pain & people like me 30 years ago were in “Wheelchairs” I was dumbfounded & left thinking if I were in a chair would he feel better about treating me? That day may come tor me but until then I must suffer through this and try to make the best if a bad situation while being made to feel as if this is somehow my fault! THOSE WHO DO NOT FIGHT WILL NEVER WIN, Thank you for this article and I would appreciate everyone that suffers or knows someone that does to PLEASE sign this oetition.
    http://www.change.org/petitions/please-help-to-stop-prop-s-petition?share_id=lpoFoPDKSa&utm_campaign=signature_receipt&utm_medium=email&utm_source=share_petition