Failure to provide adequate pain medication to people with disabilities violates our civil rights under the U. S. Supreme Court’s OLMSTEAD (1999)

Failure to provide adequate pain medication to people with disabilities violates our civil rights under the U. S. Supreme Court’s OLMSTEAD (1999) and the Americans with Disabilities Act by preventing us from becoming “integrated into the community to the fullest extent possible”, owning homes, working, enjoying family and friends and interacting with non-disabled people. Segregation of us in assisted living, nursing homes or institutions is forbidden by this Supreme Court that is the Law of the Land.

67 Responses

  1. Pharmaciststeve I have a medical and legal background. I have been a chronic pain patient since the early 1980’s.

  2. The general public’s interpretation of laws and policies does not matter. It is not their jib to interpret or carry them out.

    Like it or not, the risk of drug addiction weighs heavier than the risk of not treating pain. That is one of the reasons no person, government agency, etc is going to tell doctors it is alright to prescribe opiates to every patient that believes they need them. Patients are not doctors.

    • Hope… do you have a legal background… are you a chronic pain pt… or just a TROLL ?

    • Neither are you Hope,A DOCTOR,,,,but,,it is also against the laws that founded this country to torture another human being by denial of access to effective medicine to lessen physical pain,,if u believe u have the right to decide who will forcible suffer to death,literally,then I guess u and any in our government now believe Hitler also had the right to decide who he TOO would literally torture to decide.The fact/truth is every single piece of data u speak off is corrupted,,,thats why the truth is being censored a every point,Corrupt regimes have no use for the truth,,do they Hope,,There is not this ,,drug addiction u speak of near the #’s u claim,ever,,,just a bunch of corrupted data,and those sooo arrogant they think they have the right to decide,who forcible suffers in physical pain,,its called committing thee act of torture,,,and HUMAN RIGHTS WATCH WILL EASLY PROVE IT,,WHICH IS WHY THERE INVESTIGATING PEOPLE IN OUR GOVERNMENT WHO THINK THEY HAVE THE INHUMANE RIGHT TO TORTURE MEDICALLY ILL HUMANS TO DEATH,,ANOTHER TRUTH AND FACT U OPIATEPHOBE try to deny is,,fact,,,no-one has ever o.d.,,,ever,OR ended up in any e.r,when taking their medicine as prescribed by the doctor ever,,soo again,,proving your data is wrong and corrupt!!MARYW

    • Hope the doctors did decide,,over 300 of them wrote to medicare/Medicaid,our government and decided that the 1 size fit all does not work,,Soo Hope,,,our doctors have decided,,the the amount of MEDICINE need to effectivelly lessen physical pain from medical desease,errors etc, should reflect the needs of the patient to effectively lessen there physical pain,,,not some b.s made up number of 90 me,,,to save monies,,,maryw

      • That was great and gave me hope Mary. I sent it to my PM team, hoping they’d sign on, because they asked me too, but they didn’t even look at it… I can’t stand lip service! You either stand with patients and your fellow providers through all of this, or you don’t and simply capitulate by harming us. I fully believe CMS backed down due to these efforts. God Bless em!!!! And, all of us patients who fought with all we had, bless us all, each and every one of us. I sent the final announcement to the pm office, as I feel it supports keeping our regimens in tact, after reading through it repeatedly. It could have been so much worse and less humane.

        • Mr.Lundberg,,our doctors DID STAND UP TO THESE idiotism at medicare/Medicaid forcing these inhumane limitation on us,,,,,THEY DID NOT LISTEN TO OUR DOCTORS,,,The scuttlebutt was about 250 doctors in the last 2 hours of the comment period wrote in,,,,stating these limitation on our medicine to 90 me was cruel,inhumane and unreasonable,,Sooo at first medicare state ok,,200 me,,,now all of sudden they have changed it back to 90 me,,sooo what changed??who got bought off??Soo sadly sir,,,the 90 me is back on the playing field,,,,for now,,,,maryw

          • Really I heard nothing of changing it Medicare changing there policy back to 90mme limits (just that the pharmacist has to call the doctor back which many already do anyway). However if your state has a policy that limits to 90mme then you need to contact your state official. Medicare was not limiting what dose you could get from your doctor either but limiting how much part D providers would provide and pay for. I understand for many on a limited income that means they are stuck with those limits for lack of funds. But details are important and not assumptions or Myths.

            • Mr.Anonymous,,can u read Steves post ”Medicare announces new guidelines,” dated 4/13 I believe?,,maryw

            • Gosh,,I hope I am wrong on this 1,,,???maryw

              • Mary, I saw that article … I thought, that it was wrong, based on other articles and that I have read the entire section of the 270 pg final from CMS, several times, until I understood it well. If you like you can look it over too. It begins to discuss the Drug overutilization around pg 235, but the parts that pertain to established higher dose patients begins around p 246 thru about p 252. Id like the feed back to see if you all read it as I do. Glenna

          • I think you are misunderstanding a bit Mary. They did listen to the docs and patients. Yes, they did do a 7 day limit on new acute pain. But, they did NOT do a hard edit at 90 mme. Instead, its a soft care edit where pharmacist calls to verify intent with doc, then over ride code is entered. They told all plan sponsors that they have the flexibility to set a hard it at 200 mme or ABOVE, that would require PA or coverage determination before filling, which will be done within 24 hours. They also told plans to maybe only set the edit to trigger when multiple docs and pharmacies are being used. They also said that the call between pharm and dr should only have to be done once and then turned off, so as to not be burdensome to any of us or drs and pharms. Furthermore, it advises that people already established on higher doses, should only be offered a chance to reduce dose based on a discussion of risk and benefit with our providers, to avoid bad outcomes and negative consequences of forced cuts or abandonment that could cause us to use street drugs or suicide. Preserve effective regimens if our docs agree to maintain us on them, was the language used.I hope this makes you feel a bit better on the outcomes. Oh and so you know, I’m a Miss. Have a great day.

            • You are presuming that the Pharmacist CHOOSES to call the prescriber. I suspect that there will be many stories of pharmacist who are telling pts that they can have 90 MME/day – take it or leave it … and that would probably fall under the area of practicing medicine without a license… since until the change the law… a Pharmacist is not allowed to alter a C-II Rx.. they can do a partial fill… they would still be obligated to put the directions as the prescriber wrote.. which would cause them to change the days supply.. which would throw it back to more than 90 MME/day.. which put it back where he/she started.. if they change the directions to 90MME… then they are breaking the law as it currently stands.. Be interesting if the Board of Pharmacy, Medical Licensing Board or the DEA will take this law violation on.

              • I pray they follow the rules… I know CMS tells the plan sponsors if they can’t manage to implement the hard edits in a way that CMS says and refuses to allow the fills, then to turn their hard edits OFF altogether, until they can. Also said that one plan that had set their hard edit at 200 mme, ended up filling the higher doses 93% of the time after the Coverage determination. So it appears they don’t want people hurt by plans and I would assume pharmacists either. So, in the case you suggest what? Calling the plan and reporting or going to a different pharmacy or what? Cuz we both know there will be some….

              • So when these will be the new rules, they don’t have to do it, respond to the message and make contact and document it? Like they are supposed to??? Some will have the over ride code, but it says than plans can do an audit to be certain the care contact discussion is actually documented… and some will have to have the code generated by the plan help desk if not automated…. thats what it says…. I sure don’t know what we do if the pharmacist CHOOSES to stand in the way. Maybe CMS could be made aware of the possibility be 2019 and prevent it somehow???? Dang Steve, now I feel less optimistic. 🙁

  3. Well… I saw that she does reply to comments on her presentation/talk sometimes, so I just asked about this… Who knows, she may reply. Even if she isn’t in the habit of offering free advice on legal matters, she may reply more broadly. I thought it was worth a shot and something I’ve wanted to know, ever since I saw the Ted Talks and another FB live interview she did with another disabilities advocate blogger/Host. Kate Nicholson is inspiring and portrays us in a much better light, than the media, when we are unfairly equated with persons who are addicted. IMO… If she does happen to reply, I’ll be sure to share with you.

  4. Honestly, I think the last thing I want to do is file a complaint against my doc, cuz even though I firmly believe he is killing me with forced cuts to half, I don’t have any other options. Has anyone ever asked our group to share a name of an alternate provider, in case you get discharged for speaking up, I have and no one replied, out of two state CPP advocacy groups, I’m on a state line… IMO, we could start by helping each other out, but its as if names of compassionate providers, who understand that there aren’t any restrictive laws in our state, are the best kept SECRET. After over twenty years as a pain patient, I never thought this would affect me… but, I was wrong. I’m writing to everyone I can think of and participating via public comment, when given the chance but can’t even get a reply, when humble and desperate enough to ask. SMH…All I know for sure is that we must stick together, work together, and help each other. I’m admittedly inept at finding private citizens, but someone here may have that skill set. I thought the person I mentioned, given her background with DOJ, The ADA, and being a pain sufferer who cares enough to give talks publicly, some one here may know of her and how to contact her, cuz I’d be willing to write to her too. I’m going to go back to her Ted Talk and see, if any contact info is provided, because this is a question worth exploring further. IMO…

    • If you change doctors. You need to get a copy of your medical records and read them. You have no idea what your doctor has and has not written in your medical records. New doctors usually get a copy of medical records from the previous doctor. It is possible the way a new doctor treats or doesn’t treat you could stem from what a,previous doctor writes in your medical records. That said, a new doctor is under no obligation to treat you the same way a previous doctor did. Even if the outcome was good.

      • No Obligation??What ever happen’d to ,’do no harm,”,,,My point being is,,We go see a doctor for help w/ a medical issue,,Soo if it has been discover’d the most effective treatment for your medical issue is such and such medicines,,Then why would another doctor not follow what works for that patient?Is that not the point of being a doctor??To help find the cause and what works to lessen.or correct the medical condition a patient went in for??maryw

        • maryw, doctors do not always agree with each other. Each doctor is responsible for the patients they treat. It would be irresponsible for any doctor to treat a,patient the same,way a,previous doctor did. if they did not agree with it. Each doctor is responsible for the prescriptions they write. They can’t say they prescribed a medication because a,previous doctor did and have the previous doctor be responsible for that prescription.

      • I agree Hope. I wonder how these forced cuts are being justified in our medical records? Lord, knows its not based on me or my health or anything I’ve done. I’ve been where I’m at for 6 years…Last, four visits, I’ve not even been asked, how I am, pain levels, how I’m doing with being cut to half, and last time, I didn’t even get weighed or vitals done. Its gotten bad… I think sometimes we stay out of fear. I know this is true for me… and being told there isn’t anyone else out there by the doc. says how lucky I am to have him…. with no other medical condition would patients ever be subjected to yelling and foul language. Its been bordering on abusive. Over these last four visits, I’ve been given reasons, but none that have anything to do with me at all. So, yes… I’d like to know how this is being documented in my records. And I’m aware that things could go worse, but I’m so bad off and do think he’s killing me. My hair is coming out in clumps. my weight has dropped nearly 20 lbs, cant eat or sleep. This much pain is just more than I can tolerate. Mood is frightening and not functioning at all. As, a cancer survivor in remission, I worry that this much stress and pain, will cause it to come back. I know that sounds crazy, but I think it all the same.

        • Sign a release and get them They are your records so you have the right to see them. I get my record once a year and since there are not many pages my doctor does not even charge hem to me. Basically I have a great doctor who is a internist and she basically stated she just was not comfortable prescribing the high dose I was on which was 300mme a day. I agreed to taper my dose and she did it super slowly taking about a year to get it down to 180mg. She is fine with what I am getting and so am I because it has not made that huge of a difference in my life because the taper was done right. There are good doctors out there. People think they have to see a pain specialist when there are plenty of other doctors who are willing to prescribeto long term patients.

    • Glenna, I don’t believe that anyone is keeping empathetic Dr.s a secret. I would imagine that you have not yet come across people who live in your area.

      • I don’ know Wanita… As I said, I did ask with in both state groups, MO and KS as I’m near the state line. Crickets…. besides one person toying with me a few weeks now, but never actually giving me a name. And, as I’m sure you know, many of us are willing to travel a ways. I am located between the two largest cities in these two neighboring states, but I love your positivity. I don’t need one yet, as I’ve not been discharged for speaking up, but fear it may be coming. He knows I’m an active member of several advocacy pain groups within the area. So, I wouldn’t think he expects I not advocate for myself too, but if you honestly feel your not being heard and being harmed, I’m not sure what else you do, but try to prepare for either having to leave to save yourself, or being forced out. The past few years, I’ve been educating him on state pain policy, and extended an invitation for him to join, as well. We dont have any restrictive laws in either state. Heck, MO doesnt even have a PMP, yet. Kansas does though.

        • As I said if there is restrictive laws you would probably do better tring to find a internist to help with your issues. I think pain clinics have now gotten there heads and learned that they much more money on non FDA epidurals and burning nerves and putting in $30,000 spinal stimulators then treat us with what works. I love it when people say opiates dont fix the problems. However none of these other procudures fix the problem but they are much more expensive and if something goes wrong it can cause the patient much worse off. In fact the CDC has put a black box warning for a second time on epidural but these doctors just dont care. I would be drilling to doctor before I let him do it to me.

  5. Hi John, if you are in the USA then the complaint is sent
    to the DOJ. If a dr refused to provide adequate relief then a complaint would also be sent to the medical board that licenses them .The same would be for nurses and pharmacists.

  6. Hi Maggi, i am happy to know that you are fighting so hard. If everyone did all that they are able to do we would be so much furthed ahead.

    There are steps that should be taken before a complaint is filed with the United Nations. One must first bring their Civil Rights complaint to the DOJ. If this hasnt been done the UN will likely reject the complaint .

    • That’s just not true Mame,,,I have written the U.N,,sent the complaint exactly as they state on their site,and it states nothing about a DOJ,OR CIVIL RIGHTS,, anywhere,,,U do however must use their forms and fill them out proper,,And they have formally replied,,fyi,,maryw

      • Saw recently that Human Rights Watch org was taking letters from us… I also saw where someone said they had enough already, so maybe they aren’t anymore, but maybe they’ll do something positive here in the USA on this… Have lawyers who volunteer their time maybe??? Idk how they work to affect change.

      • pss,,Thee official U.N responds was as mentioned below,”That denial of access to effective medicines/. Medical care to lessen physical pain ,is indeed torture ,”Also in no-way shape or form does that mean that agency’s like the U.N should not hear from others.Maybe the more they hear from us the better,,and u may never know who else u help by contacting any who can help us..Hell the letter I wrote was forwarded to some lady from Africa,,so it may help people you’ll never even meet,,fyi,jmo,,maryw

      • A formal reply may have been given but that is not the same as a formal hearing. I can’t see the UN taking formal steps to address the issue in Canada and the USA with politicians unless someone has first gone through the appropriate channels and that would involve filing an official Civil/Human Rights complaint.

        • Ms.If u could,,could u please direct me to the exact location on the U.N.H.R.C site of your Claim?Furthermore the U.N.H.R.C. did come to America,,to discuss these human rights abuses by America,,,the United States REFUSED to even sit in the same room with the U.N committee on Human Rights,,,the U.S. literally refuse to show up,to discuss these issues.Soo maybe your directions in your country our different,,but the U.N H.R,C. page is pretty universal,,,It simple states that every avenue is to be pursued to request help in your own country,,before contacting them,,and we have contacted every stinken agency so far,,we just found a couple more…But the big picture is as of right now,,the U.N does not have legal authority here in America,,yet,,,,and our politicians know it,,thats why there abusing and killing us,,Furthermore and this is a BIG POINT here,,if u r in any other country then America,,alll countries accept America,,,adhere’s to the U.N doctrine on Torture,,thats imporatnt to understand Ms.Every country accept Americas,,adheres to the U.N doctrines on torture,,Soo England adheres to the U.N doctrines,,,we do not,,Our country states,,’If there are lawful sanctions in place,,our government can/will /has tortured humn beings,,It further states,,if other countries agree w/those lawful sanctions,,its ok to torture,,which is why America is trying sooo hard to get Canada,England etc,,on board w/this opiatephobiia bullshit,,Soo they can justify killing ad torture the medically ill in physical pain,,truth be told,,maryw

        • Again a official complaint was filed,,maryw

    • I’m on it believe me I’m recovering from my 3rd surgery on my spine since last February. We were forced to relocate because where i use to live and where i fell and was seriously injured and was treated like a drug seeker and told neh you just have a bruised coccyx…i landed on my tailbone it felt like everything from there up was shoved into my brain i was given 20 tramadol to take 1every 6 to 8 hours for the next 20 days. I still have that bottle and all the medical records of how maliciously i was treated i am also trying to file a tort and i have 2 years and 4months to find someone brave enough to take it on or will continue looking on how i can handle it myself. I am very well educated but because of my misdiagnosis and failure to treat i had to drop with only 1 year to go to finish my bachelor’s degree in human services management I’m also a member of the national society of collegiate scholars so once I’m back on my feet and my pain under control because I’m told i will have pain for THE REST OF MY LIFE I’m told. When i fell my disc between 4l and l5 was ejected on impact causing a vertebral collapse the 4barely landed on the edge of the5 and because i was not given treatment in a timely manner those vertebra fused together and both the sciatic and peroneal nerves trapped in the fusion. I had to fly to Seattle to get care after a surgeon where i used to live continually lied to me about giving me the surgery. The surgeon in Seattle said he expected me to be in a wheelchair with this type of injury to my spine. I now have bilateral drop foot and neuropathy in most of my body including my mouth. I had 3 level acdf on Feb 28 c3to c7 the discs were replaced with cadaver bone and i need more spine surgeries and thefall caused a left anterior 2nd rib fracture that took the almost 4years to find and i had a heart attack and got the original ekg and the medical records from the event last August that almost made me take my life. I was tortured…i want them to lose their livelihood and their nest eggs and their medical license and then i want them to sustain an injury so significant and try to get help, try to find relief all these things that I’ve mentioned here were never treated or referred to cardiologist nothing like i was faking it. I have been diagnosed with severe emotional trauma andI’m still not over it and doubt I’llever be and this ain’t even half of what they put me thru!

  7. I know my rights are being violated and as a disable person still trying to work in severe pain cause I cant lose my insurance in my time of need. I go thru my deductible and copay every year. 9 degenerated disc and 3 failed surgeries. I’m being discriminated against being taken off opioids and cut down to 3 Tylenol a day is inhumane treatment. When I find an attorney to take my case of discrimination/pain/suffering I will sue. Whether it be individually or class action. If there is an attorney out there that reads this please call me or Facebook me ( John Schoellman). The Mayo clinic already told me I’m being way under-treated but being a thousand miles from the Mayo they referred me to another PMD. Well as we know all the doctors look at my MRI records and say. I’m sorry, we cant treat you cause you need meds and we are not excepting any patients the require pain meds.

  8. I been saying this for how long now how come when i say this nobody bats an eye but someone that must have some type of name gets the credit?

    So yeah our civil rights and liberties are being violated but you know what these gets you when you finally tell your doctor? You get black listed and discharged from care Yes that’s right it happened to me and i gotit all in black and white.

    Nobody gives a damn about us we’re are collateral damage.

    • It shouldn’t matter who gets credit. Share information, circulate it and share it again. Eventually when we turn this around we will understand that it was our collective voices that did it. We, as a whole group would contribute in some way. Eventually we all know what part we played.

      • Who do you send a complaint to? Is there a name or link. All I’ve been doing is writing our politicians till I’m blue in the face with no return comments besides a standard replay

      • Oh I’m all over the place Wanita, as a matter of fact i was just interviewed by a major reporter for the Washington Post for a story they’re doing on how far cpp are having to travel to find a place to get help for cp. I’m also taking our plight to the UN since this is called the OPIATE WAR this does meet the conditions under the Geneva Convention. I’m accusing the CDC and the FDA for crimes against humanity and domestic terrorism under section 802 of the us patriot act. I’m busy all day every day looking for a lawyer to sue 4 of the 12 authors of the CDC OPIOID GUIDELINES. Need i go on? I been screaming for 4 fucking years about being tortured and even now I’m in such poor health I’m on my deathbed. I won’t quit i will keep coming till those that have caused me to get so sick because i was not given care from a spinal cord injury my auto immune system is shot because of the stress of untreated pain did to me. Rheumatoid arthritis lupus and sgorjrens neuropathy everywhere including my mouth. I’ll be 51 this Sunday and it’s game over for me. I’m devastated and i will notstop coming or screaming at this major social injustice to myself and the other 124+ million people whom i consider my brothers and sisters in this country going thru the same hell. Oh I’m mad as hell Wanita,and nothing will make it better than a boxcar full of money then I’ll up and leave this God forsaken country and go to Malta and live out the rest of my days as comfortable as i can be made without feeling like I’m a piece of dogshit on on a provider’s shoe simply because i have pain through no fault of my own.

        • Ms.Martin,,,the U.N has already stated,,that this is in fact torture,,There exact words are,”Failure/or denial of access to provide effective relief for physical pain is defined as torture,”,,,U.N knows all about us,,,however,,the UnitedStaes refuses to meet w/the U.N concerning us.Furthermore,,the U.N does agree w/us,,but lacks the legal authority in America to prosecute anyone,,,fyi,,Also the aclu ,,both,,,aclu’s know all about us and refuse to help us,,because of who thier financial contributors are.The have been asked legally.leaving no stone unturned, at least 3 times that I know of..,maryw

    • In Canada, once a Human Rights complaint is filed it is against the law for a place of business etc to lash out at the person who filed the complaint. This means that a PCP cannot dismiss, harass or intimidate a patient without consequences. Maybe someone could read the the ADA to see if there is similar wording

  9. https://www.youtube.com/watch?v=u4vHSLeTe-s

    This is the woman, Kate Nicholson. retired civil rights lawyer… and its a great story, familiar to us all. Maybe we could ask her opinion somehow??? It seems she would be an authority.

  10. So when is someone going to challenge this? Most of us don’t have the money, and from my experience, it’s impossible to find an attorney willing to take it on. We need to start getting this message out! Has anyone taken the time to do the research to show where and how this is written in the law/laws?

    • Sky, stop waiting for a lawyer to come along. You do not need one to file complaints. COMPLAIN-COMPLAIN and COMPLAIN again. Don’t stop. Forgive me if I mess this story up -Does anyone know the Bible story about a woman who repeatedly keeps asking that justice be done?Jesus tells the people that eventually God will act on her complaint simply because she is persistent and God will get tired of her constant complaining for justice and will act on her prayer. It goes something like that anyway. My point is, if enough people keep filing complaints someone, somewhere, will be successful

      • You are right. You cannot just send one letter and think it is enough. We need to keep writing and when writting politicians they need to go though the mail and not just emails or phone calls. It also helps if others can also send letters around the same time frame to the same person. Also many politicians are doing meet and greets and town halls. Sign up and ask questions. Try to get some other pain patient together to get a appointment with you Representive who represent you in Washington DC but also for your state (which actually maybe more important). I think that many politicians have been flooded with grieving parent who want to blame someone and really feel if opiates were not prescribed there son or daughter would still be around. Unfortuately they have been fooled. Lobbyist like PROP have been screaming in politicians head and the media focus no wonder these horrible decisions were made in attempt to do something that would hopefully work over night. This is what happens when policy is based on emotion and not facts and science. We need to focus on finding healthy ways for our children to learn how to handle stress. The drug is not the cause but many complex issues that lead people to abuse a substance it is only a symptom of addictive behavior. Unfortunately we are finding out that taking away precription medication from patients does not help and may make someone who does become addicted making there problem worse when we take the pills away. In fact there was a big increase in deaths when states put prescription monitoring programs insince the addicts just moved to the street. I saw a notice the other day that a doctor was going give a talk at a local community college about how the medical community was the main reason for why we have a opiate problems. Well I went to his web page and found out that he was a member of PROP. On his site he had what he called were articles that he wrote that were written in major newspapers. Well on the very bottom of the page of these articles I learned that they were nothing but fake informative ads since he paid to get them in the paper. More and more companies are doing this. For example they will write something that looks like a food critic wrote giving their restuant glowing remarks when in fact it is all made up and they paid to have in the paper. In addition the guy gets $10,000 to pedal there crap for each speech he does. We need to be calling out there tatics as they take advantage family members anguish of those who lost member due to addiction and hurt millions of Americans just so they can make money off millions of people suffering. For family who lost member of their families they deserve the truth and not a bunch of lies making the problem much worse Shame on them.

  11. Unfortunately, no one is guaranteed opiates for pain. That includes those with disabilities.

    • Well Hope, just give up then. I am so tired of hearing excuses from people. Every time someone mentions a way to fight another steps up to discourage them. Stop it. People are entitled to relief of pain and that may or may not include opioids. Other medications have serious side effects as well so it is a matter of finding what works best for each individual. People need to stop with the narrative “no one is guaranteed opioids” and begin fighting for the right to pain relief which may or may not include opioids. Instead of saying “I want opioids!” begin fighting for your right to Informed Consent. I posted numerous times on FB and Twitter what Informed Consent entails and it includes considering all reasonable treatment options and the benefits and risks of each treatment. Informed Consent does not involve arbitrarily removing a valid treatment option because a health professional “doesn’t feel comfortable”. There needs to be a clear medical reason to withhold a reasonable treatment option. Informed Consent does not include coercion. If a health professional is telling one that they will not provide reasonable oral medications unless invasive procedures are tried first then that is coercion. Start challenging instead of waiting for some law firm to come along and launch a class action. Can anyone tell that I am angry? I agree with Terri Lewis about get on the train or get out of the way. People need to help themselves in every way possible and most of it can be done by using the internet

      • Hmmm,,,,Wanita I agree,,and have and are currently fighting to get us help everyday,,but I still have my medicines,for now,many here do not,,,and if u r a true CPP then maybe we need to remember what it was like in forced physical pain and no meds,,,your tired all the time from the forced endurement of true real physical pain,,,u don’t sleep,,because the true physical pain wakes u up,,,I’ll never rember the 1st time I actual got ,medicine to lessen my pain from undiagnosed pancreaitis,,I SLEPT FOR 3 DAY STRAIT,,, after only sleeping at 40 minute intervals from shear exhaustion for over 6 month,The medicine wad given for a collapsed lung,,missing the pancreatitis again,,hell not even testing for it!!!,,My point being,,is never forget where we came from,and its a human right and duty,,to fight for those,,who cannot fight for themselves,,maryw

      • Wanita i can speak for myself when i say i started at the bottom for pain relief. First otc, then a mild non opioid pain reliever, then opted relievers and injections and surgery and cognitive therapy I’m sure most of us has. Why are you lashing out at the people here? It’s like you’re blaming us for being treated like shit and here you come to further harass us here. Those than can do so if you can do anything other than lash out about how we aren’t doing xyz i have to ask myself are you even in pain?can you please for the sake of my own curiosity identify your self as a person with a chronic painful condition? Seriously what’s your angle to come here and tout your rerired knowledge girl put it into action. Talk is cheap, if you’ve got connections or an in somewhere dust off your business suit and do something. You’re making it so i don’t want to even participate with your ugliness and negativity.

        • I have been very licky because I am still getting the opiate medication I need so I can funtion (like go to the store to buy food). But I know that some stupid law could change that and I have the empathy that so many people are suffering unnecessarily and were not before. Hope are you a chronic pain patient even? Maybe you found something like mmj that works for you but not eveyone reacts to medications the same way. They have been brain scans that when you take opiates when you have no pain the medication a high feeling that is not equal to what someone in pain has. Also since dependancy is basically normal with any substance we take long tern (either physically or psychologically) that is not a excuse to not use them. You statement sound as if you are someone who has really never siuffered from pain on a constant daily basis where your sleep in almost nonexistent. So maybe you should learn a little bit more of the fact. PS if you are a addict and had problems or know someone is hat does not mean everyone who needs opiate medication is. Addiction is not just a medical issues but also a mental and psychological one.

    • Access to Pain Management—Still Very Much a Human Right
      https://academic.oup.com/painmedicine/article/17/10/1785/2270355

      “Failure to provide access to pain management violates the United Nations 1961 Single Convention on Narcotic Drugs declaring the medical use of narcotic drugs indispensable for the relief of pain and mandating adequate provision of narcotic drugs for medical use.”

      • You may be absolutely correct. In Kansas, there was a joint letter prepared and released in the Fall of 2016 by the board of healing arts, nursing, and pharmacy. It said that undertreated, untreated pain are just as bad as overtreated pain. It also said that refusing to treat pain was ok too, if the person was referred to one who was more knowledgeable or comfortable…. something to that effect.

      • amen,,,,bingo,,,mr.NA,,,maryw

    • It is against the law to deny access to effective medical care/medicine to will cause severe physical pain to continue,,In legal terminology it called torture,,maryw

    • Actual Hope,yes we are guaranteed not to be torture in America by our own government and Denial of access to effective medicine to reduce physical pain is the definition of torture,,,Furthermore as Steve pointed out the Olmstead act guarantees us effective treatment for physical pain,,The United States deems severe physical pain as thee procces of death onto a internal organ,,Very curious your interpretations of thing Hope,,,this,opiates,Hippa laws,,,almost like u have done a personal interpretations of this laws,regulations for some other purpose than pain control,,,maryw

  12. So what can we do? Where do we go? Who do we turn to for help?

    • Sally, people can file a complaint with the DOJ in the US and in Canada people need to file with Human Rights Commission. No lawyer necessary. People should be submitting complaints with health professionals’ Governing body. Write complaints to Hospitals and clinics. Do something. It takes courage and I know it can be stressful but being in constant pain is worse. I offered to help people with letters and complaints but no one follows through. People are intimidated and some continue to simply wait for others to do something. Submitting complaints may or may not be effective but at least it is something If enough people file complaints, one may finally make it to some one who is important enough to do something about it. People need to STOP waiting for a class action suit. People need to STOP waiting for a law firm to step forward and file themselves. It doesn’t take a lawyer to file complaints with medical boards. It doesn’t take lawyer to file a civil rights/human rights complaint and it doesn’t take a lawyer to write to hospitals’ public relation boards. FILE-WRITE-SPEAK-take a deep breath and do something!

      • Found it. Has it helped you??

        • Actually John, it has helped. After meeting with Politician caveats were added fo the Guidelines and i received a letter from the Federal Health Minister that states that the Guidelines are not mandatory . I imagine that it was not my voice alone that helped but everyone’s all together .

          • In the US, the CDC Guidelines are not laws. They are only recommendations. It is up to each doctor to treat each patient according to his or her professional judgement. Unfortunately, many doctors lie and blame what they chose to do on new laws or regulations. That way, patients don’t usually directly blame the doctor.

            • I do because they could be fighting also and they are not. My doctor prescribes opiate to her worst patients and she has never been reviewed by the DEA. The problem with no one prescribing then those who do look like they are over prescribing especially if they are a pain doctor who treats chronic pain and probably halve there patient would be on them. But how many of them complain. Instead hey saw it as a great way to increase the use of expensive, dangerous procudures. I know some of the VA doctors are not happy because patients they had treated for years are now suffering and know this is not working but there hands are tied.

            • Hope those guidelines and the changes to what is class 3 verses class 2,,,are used in a court of law by the dea to arrest innocent doctors&,take away their lifes work,,Soo what doctor is not going to institute them as law,,if they are used in a court of law against them??Furthermore the changing of the class 3;s to a class 2 was done for 1 purpose and 1 purpose only,,,its bigger felony onto all doctors,,No Hope,,some doctor may lie about some things,,,but lieing does not stop them from giving their medically ill patient the medicine they need..The dea,doj,hhs,fda,Andrew Kolodyn,our federal governments 44 million $$$ propaganda machine is stopping our doctors from giving us what we need to effective lessen our physical pain from medical condition,,with the very real threat of jail if ANY innocent doctors prescribe oipiates,,thats a fact,,,,maryw

      • Im doing as much as I can, however I have not written to the DOJ. I will do that now!

      • You are exactly right. Other thing we can do is a lot of new people are running for the 2018 elections. Some of these people will win so now is the time to show up to there meet and greets, townhall meetings and help with campaigns to let them know you are a chronic pain patient who is doing well on opiates or suffering because of not having them. I belong to a lot of different of meetup groups and by the time I have meet someone a few times so they know me a little bit and cannot pre judge me right away and tell them I am on opiates they are totally surprised (they expect to see someone on opiate drooling or nodding off all the time but that is what the media shows) . Another thing is I alway mention is if I plan to go meet them for a event down the line it will depend if I will be still on my medications. When I tell them what is happening when people go to the ER or how they get treated after surgery due to the lack of pain control they are not happy and basically say how horrible and unfair this all is. Most people have no clue what is happening because all they see day after day on the media is the deaths caused with opiates that they learn from TV is totally caused by pills gotten by doctors. They never tell the average death of a OD victim has 6 other drugs in them like meth, alcoho, benzos, LSD ect. The fact is that 90% of those who OD in the ER never got a prescription from a doctor

  13. You know, one of the lawyers (a pain sufferer),who helped write the ADA, was on Ted Talks giving a presentation on our plight. I’ll have to see if I can find her name, because I wonder about this myself. She only told her story about having to lay on the floor to work, and having to rely on pain medication for years, until surgery corrected the painful condition. She didn’t say anything about this or how to go about it. I sure think she would be the one to ask. I recall that she lives in CO.

  14. With that said, does it mean anything?????
    Since they changed my meds I have been inside the house…

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