Urgent Action Needed- CMS Strategy Proposal Poses Potential Threat to Chronic Pain Community

Urgent Action Needed- CMS Strategy Proposal Poses Potential Threat to Chronic Pain Community

By Staff

In an email sent to their Pain Ambassadors-Advocates on Wed, March 1st, U.S. Pain Foundation asked their members to take action against proposed changes in a 30-page “Opioid Misuse Strategy 2016” proposal by Centers for Medicare and Medicaid Services (CMS) that is intended to “curb opioid misuse and abuse.”

In the email, Cindy Steinberg, National Director of Policy & Advocacy for U.S. Pain, described the foundation’s position on the proposal,

While we support certain aspects of the strategy that will improve the treatment of people living with opioid use disorders, we are disappointed that CMS’s proposed strategy does not give fair consideration to the millions of Americans who live with debilitating chronic pain and will likely cause undue and needless suffering.

U.S. Pain is asking people to contact the Centers for Medicare and Medicaid Services (CMS), regardless if they are on Medicare or Medicaid, by this Friday, March 3rd.

U.S. Pain Foundation has pre-generated letters for their Pain Ambassadors-Advocates; however, those letter that can be edited to be used by those who are not Pain Ambassadors, who wish to voice their concern.

If you are interested in taking action, you can CLICK HERE to customize and send a pre-generated letter to the appropriate parties, or you can use the sample email message at the bottom of this article, as prepared by U.S. Pain Foundation, to send to CMS by Friday, March 3rd.

All comments should be emailed to: AdvanceNotice2018@cms.hhs.gov.

U.S. Pain Foundation also provided additional resources regarding the potential impact of the Opioid Misuse Strategy:

CMS publishes new strategy to combat opioid misuse—U.S. Pain eNewsletter, Feb. 1, 2017
Medicare Planning to Adopt CDC Opioid Guidelines—Pain News Network, Feb. 3, 2017
Strict limits on opioid prescribing risks the ‘inhumane treatment’ of pain patients—STAT news

A final version of the strategy will be published on April 3, 2017.

Sample email message:

To whom it may concern,

I am writing to you as a chronic pain patient and as a pain ambassador-advocate for the U.S. Pain Foundation who is deeply concerned about certain provisions in CMS’s Opioid Misuse Strategy. [Explain here what type of pain you have and how it affects you.]

As the leading chronic pain patient advocacy group, U.S. Pain Foundation is committed to protecting access to vital pain management options and preventing pain medication abuse. We believe it is possible to achieve both goals through balanced reform. Unfortunately, many recently adopted policies at the federal and state level are causing unnecessary suffering for patients with pain. We believe aspects of the CMS’s Opioid Misuse Strategy will further harm patients with legitimate pain and urge you to reconsider them.

We support CMS’s priority areas two and three, which we are important steps to reducing opioid misuse and abuse. However, we urge CMS to reconsider certain aspects of priority areas one and four (“Implement more effective person-centered and population-based strategies to reduce the risk of opioid use disorders, overdoses, inappropriate prescribing, and drug diversion” and “Increase the use of evidence-based practices for acute and chronic pain management” respectively).

In addition to four specific concerns detailed below, our general worry is that many of the measures in priority areas one and four—however well-intentioned—will have a chilling effect on pain care, which in many ways, is already under siege. [Explain here how opioid limitations may have affected you.]

There are four specific measures in these two areas that we find distressing:

1) The dosage limit of 90 mg of morphine equivalent milligrams a day.

We believe that medication dosage is best left to clinicians, who are explicitly trained to administer medications in a way that meets their patients’ unique needs. It is crucial to understand that each patient is different. The type and amount of medication administered depends on patients’ unique body chemistry, their size and weight, and the specifics and severity of their pain. While 90 mg may be too much for one patient, for another, it might be the only way to manage their pain and allow them any semblance of daily function.

It is important to understand that the Centers for Disease Control and Prevention’s opioid guidelines were created as just that—guidelines, not rules. The guidelines also are explicitly intended for primary care providers, not specialists who may be treatment patients with extremely complicated, debilitating pain conditions. A direct quote from the CDC: “The guideline provides recommendations for primary care providers who are prescribing opioids for chronic pain outside of active cancer treatment, palliative care and end-of-life-care;” [Emphasis added.] CMS’s proposed change ignores this vital context.

2) Monitoring and tracking measures that pit pharmacists, physicians, and patients against one another and publishing individual prescribers’ opioid prescribing rates.

We are concerned this will create a negative environment that is counterproductive to the collaboration and patient-provider relationship required for effective, high-quality health care. Because of the current backlash against opioids, many clinicians already are afraid to prescribe them—even when they are necessary and appropriate for a patient’s pain management. Threatening doctors with punitive measures even when prescribing appropriately is leading to unintentional and unnecessary patient suffering.

3) Revoking prescribers’ enrollment in Medicare Part D for “inappropriate behavior.”

Threatening prescribers with revoking participation in Medicare Part D is an extreme measure. It seems more directed at frightening care providers into not prescribing or, worse, not treating chronic pain patients than it does encouraging compassionate, patient-centered care for our sickest, oldest and most vulnerable population of Americans. Who will judge what is “inappropriate behavior” and what measures will be provided by CMS to allow prescribers to appeal such an extreme sanction?

4) The lack of specific measures to ensure non-pharmacological treatments are accessible and affordable.

U.S. Pain enthusiastically supports the call for an increased focus on alternative, nonpharmacological treatments, such as physical therapy, cognitive behavioral therapy, massage, and chiropractic care, as well as on non-opioid pharmacological treatments. However, in most cases, these alternative, nonpharmacological treatments are not well-covered by insurance, if they are covered at all. CMS is not specific about what it will do to ensure that these alternative treatment modalities will be covered and payers that work in conjunction with CMS. It is unfair to severely limit opioid medications for legitimate pain patients without presenting a tangible plan for increasing the accessibility of effective alternatives.

Controlling the misuse and abuse of pain medications is critical, but the importance of decreasing substance use disorder does not outweigh the needs of millions of people who suffer from debilitating chronic pain. On behalf of pain patients everywhere, please reconsider these measures and the negative impact they will have.

Sincerely,

[Your name]

[State] ambassador-advocate for U.S. Pain Foundation

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Authored by: Staff

There are 41 comments for this article
  1. BL at 9:06 pm

    Tim Mason, almost all, if not all, pain management doctors won’t prescribe opiates for a patient unless they have a copy of their medical records from a current doctor proving they have a medical condition that may require opiates. The days of patients receiving opiates just because they say they are in pain is over. That is one of the things that got us in the mess we’re in now with opiates.

  2. Tim Mason at 3:27 am

    Imaging and previous surgeries go a long way in getting the proper medication including opioids. Patients with Vague symptoms and general aches and malaise w/o diagnostic imaging and w/o an ICD-9 code from a referring physician get very little empathy from pain clinics.
    My sister has a rheumatologist and she is treated fairly well there she says. She had a cervical fusion with hardware but had fibro symptoms before seeing a rummy.

  3. BL at 9:01 pm

    mary stephenson, if you can’t find a doctor that is willing to treat you with the treatment you want does not mean any laws have been broken. There are no laws that give anyone the right to opiates for chronic severe pain. Doctors use their professional judgement with each patient.

    You have to read the laws in the context they are written.

  4. mary stephenson at 6:37 pm

    BECAUSE: Im disabled since 1991 and Im entitled to treatment like everyone else with first amendment rights here in the USA.
    Freedom of Expression in the United States | IIP Digital
    iipdigital.usembassy.gov/st/english/pamphlet/2013/04/20130416145829.html
    Apr 17, 2013 – The U.S. Constitution’s protection of freedom of expression embodies … and other citizens may disagree with them — the First Amendment promotes … or require permits for parades and organized protests to ensure that they do … sexual orientation or disability — receives full First Amendment protection.

  5. Tim Mason at 5:46 am

    BL your are right. I’m really not supposed to take any of these because I developed stomach ulcer from 3 months of Celebrex treatment. I had to take a lot of Carafate to get that bleeder healed up. Those Cox2 inhibitors can ruin your stomach. I know you knew that already. It is just that some docs say take twice the recommended dosage on an over the counter medication. All drugs have risks, especially over the counter medications.

  6. mary stephenson at 9:29 pm

    I have lived in the UNITED STATES OF AMERICA for 63 years & 2 months. I worked all summer babysitting 3 kids every summer while in grade school every summer break, worked when I could get my workers permit & then after grade school & on Saturdays, then all thru high school after school until 9:00pm at night, as cashier, all the same people over the years of my young life. I live in a free country & Im now a permanently disable person who worked until I was injured by the hands of a chiropractor’s hands sideways lash. Why can’t I have a life with 75-85% pain free? Give me back my medication so I can live 30 days without being in bed for days at end of the month, every month.

    The Big Pharmas & big Rehab Companies wants to put everyone who is on medication in a drug facility at about $30,000 to $50,000 in a rehab for drug addicts, hence the debacle of how PRUDUE started the stupid statement, that no opioids are non addictive. NOT TRUE, over 30 years ago, my spine specialist & I discovered that all PAIN MEDICATION was addictive, nothing is addictive, WRONG everything is addictive. Go thru a list of foods, drinks, smokes, so much more, spices, hot sauces, ice cream, on and on!! What incompetent man stated that when the opioids were coming out by Purdue

    How the American opiate epidemic was started by one pharmaceutical company

    FYI, PURDUE Pharma, makes the OXY for the street drugs & they also make spray to save the street drugs spray . How IRONIC?

    Per the ACLU we have the right to speak out. Both the California Constitution and the First Amendment to the United States Constitution protect your right to free expression. But there are many questions you face when you decide to organize and speak out. When do you need a police permit? Are there things you cannot say or do? Are there any limitations on when or where you can demonstrate? What about civil disobedience? GO to ACLU page at your rights.

  7. BL at 8:50 pm

    Mary, I wish I understood why some people think they can sue because they don’t like the treatment they receive from a doctor. There is nothing to sue over. It is up to each patient if they want to receive treatment from a particular doctor or clinic. It is up to each doctor and their professional judgement how they treat their patients. If a patient goes to a number of different doctors and none of the doctors will treat the patient the way the patient wants to be treated. That should tell the patient their expectations are no longer realistic.

    Like it or not, chronic pain patients cannot force doctors to treat them any particular way.

  8. BL at 3:14 pm

    Mary Stephenson, I’m not sure why you think your First Amendment Rights have been violated.

    CDC Guidelines do not break any laws. It is still up to each doctor to prescribe for their patients the way the see fit. Unfortunately, a lot of doctors blame the CDC Guidelines or other things when in reality they have decided to change the way they prescribe based on their professional judgement. Telling patients changes are due to the CDC, DEA, ect makes it easier on the doctor because the patient doen’t blame the doctor and argue with them.

  9. Mary at 11:01 am

    We need to have class action lawsuits to protect us from abusive pain clinics. We take medicine because we are in chronic pain. We do not sell drugs, we lock them up. Yet we are the ones being punished for actions of others. The DEA rules are accomplishing nothing, except people like us live in hell, and for drug seekers to turn to heroin. Just because we don’t have a serious disease with death imminent. Just because someone doesn’t have an expiration date, doesn’t make them anymore important than those with no death date but instead are living day to day trapped in pain riddled bodies. Most pain patients just want you to listen to them, and tell you what they want and need. Lower socioeconomic groups,disabled, younger patients are particularly likely to be targets’and these patients frequently receive lower doses, of opioids, but higher levels of scrutiny. Pain doctors put money and greed over treating chronic pain. Reducing chronic pain to 50% is not quality of life. We’re not looking for pity, and the quiet disgust or contempt that comes with pity, we want compassion. When your primed to view people with mental illness as “fundamentally unstable,” gaslighting is next logical step. Often the abuser is a medical professional or someone in position, and once you get labeled your word is considered unreliable. We just want to be able to speak and heard, to be believed, and akknowleded for our pain. If no one believes you when you say your in pain, it’s a terrible feeling. Treating insomnia can help a chronic pain subside. Opioids can disrupt sleep. Healing is found when we have others who are willing to enter that space alongside us. So many patients are being abused and gaslighted, and that’s the premise of the class action lawsuit.

  10. BL at 10:50 am

    Tim Mason, with Aleve (Naproxen) you aren’t suppose to exceed 500 mg in a 12 hour period. With Advil (Ibuprofen) you aren’t suppose to exceed 800 mg every 8 hours.

  11. Tim Mason at 4:11 am

    BL 4 capsules every 12 hours.. I think 2 capsules is the initial dose then 1 every 8 to 12 hours.

  12. BL at 2:09 pm

    Tim Mason, were you take 2 Aleve twice a day ?

  13. Mary Stephenson at 9:31 am

    Barbara,
    I would like to file a class action suit against my first amendment rights. I’m disable for over 29 years taking same medication from my spine dr who unfortunately had a stroke and couldn’t practice anymore. So I’ve been tossed for here to there. My spine dr saw what was in my nerve roots there were chunks of nerve which had turned into jello his words to be describe, laying on or in my nerve root for 22 months and did horrible nerve damage.

    The chronic pain patients are all messed up now. Dr and I had control in it with my medication now not so much.

    I was able to function to 65-75% on the medication my dr gave to me when ever needed . He gave me medication when I needed it to function, meaning if Needed some extra I would get it otherwise I would be in bed. I saw him every 3 months with refills, I had a life to degree now I’m lucky to go outside my door.
    But if I’d go into a real bad spasm he would help me he would give me gave me enough medication, so I could function to a degree so I could go see him. He moved to Newport Beach because the office was sold after a few years after my spine specialist had his stroke. I could go to Newport Beach monthly when I’m in Ventura.
    When DrWilliams was still practicing I would go anywhere to see him for he knew what was going on in my neck, shoulder, spine, back, legs, hands whole body. Any help Barbara I beg you any help. I get medication now but I’m fearful that it will be gone any day? I live in pain, anxiously, fear I’m going to get thrown to curb like I’ve been since the chiropractic did to me in 1988. Help me Barbara
    Dr thought I had RSD over 29 years ago when no one ever heard of RSD?
    So much to type, I have severe nerve damage in right arms, hand shoulder, spine more. Legs, whole body. I’m a mess.
    Was told by 3 spine dr that I was to be on pain medication for rest of my life. I also would add some other therapy like acupuncture, but the needles were making my nerves collapse and wasn’t helping. Early on my spine surgeon and I decided quality of life, verses quantity of life for the remainder of my life. I was only 33 at the time, but almost 35 by the time the 38th dr sawmri of my neck saw the herniated disk. Dr didn’t know what to expect only once he got into my damaged area.
    I’m a good case to investigate Barbara took 22 months and 28 dr to find out it was a herniated disk. But all the damage in between is why I’m in medication today and my life is like it . Help please!
    I had EMG done in August 2914-or2015? Not sure off top of head. The dr apologized to me for having to live in this pain all these years! I thought was odd coming from dr.
    Thank you I have a lot to tell someone and it’s important. I got a herniated disk from sideway whiplash from chiropractic, waited 22 months after seeing over 28 Drs. And it was a simple fix but after the time delay, now this. 1/2 my life taken away from incompetent doctors now I’m still paying the price of PAIN. At least I had some hope with the medication, now that will be gone too and the CDC can count me as another one of their mess up!

    Since this change of the CDC interfearing in my dr and my life. I’m in bed more now than I’m out of bed trying to function. I take Tyndall #4, Sina for all muscle spasms, Valium mostly at night or when I’m in spasm so badly I’m in a frozen position to a degree. My hand is numb , nerve damage. C5-c6 can I call you or vise versa? Please we need help. Thank you for reading.
    805-435-8264. I have all test MRI cscans to back all y claims.
    Thank you Mary Stephenson
    Mary Stephenson
    Barbara I’m disable but can function somewhat with medication. Why can’t I have something of a lifewith 1-2 additional medication a day? No abuse here just trying to survive daily.
    Before this debacle. I lived fine for 28 years on same medication, now I’m in bed when my meds run out.
    Thank you for reading part of what’s going on in my life. I’m 64!in May and lucky if I live to be 10 more years? There are days when I wish my life was over that moment the pain in to much to bear.
    Help us Barbara, please. Help us!

  14. Jud at 8:46 am

    Well said. Thank you for posting your comment.

  15. Tim Mason at 7:32 pm

    Debra, Your comeback response for the NP that said opioids have risks…just say..All drugs have risks, even over the counter drugs. I had an encounter once at a spinal place where the doc said just take twice the amount of Aleve it says to take. I did for a week and told me GP about it. He said, “look at your ankles”,”they are swollen at the tops of your socks. You keep this up and you will blow your kidneys.
    All drugs have risks. Opioids in the hands of a responsible patient are less risky.

  16. Barbara Woolston at 4:40 pm

    I have had chronic pain for over 25 years, due to 3 major car accidents. I have damage to neck lower back, female pain , & goes to my legs where standing ca n be very hurtful for a long time. I have had Triple back surgery, chiropractic numerous different alternatives done, plus opiods that actually work. But I used to get more &I could totally tatake care of elderly patients do many jobs. Now they try RFID treatments which almost paralyzed me. Cortisone I very helpful. But all the other kinds of drugs eat up my stomach. My pain doctors said the DEA put a limit on the drugs that actually help me. They r scared. In short I agree with all of u! This is cruel & inhuman treatment. Alchhol , ciggaretts are legal to take. We have civil rights over our own body.Under the constitution this is the larges violation against a body if citizens. We must organize & act together. I am willing yo hive money for Civil rights attorneys. In Los Angeles there is a firm whom they said they can represent us. They even overturned the constitution to insure our rights r protected & reversed the violations with a class action Lawsuit! Only need 1 patient whom received less drugs fo to DEA pressure on there doctor. Post on National pain report if u want to join forces & figure this out. Thanks Barbara

  17. Debra Taylor at 6:51 pm

    I thank you all for voicing my same concerns. Recently my Dr visits have left me with the impression that they were trying to unload me as a patient when a nurse practioner joined her practice. I have been with this rheumatologist for 15 years, (have a pain contract signed with her) The NP wanted to start me on the long list of medicines I had tried years ago, NSAIDS, Neurontin, Cymbalta, my opioid medicine that has given me enough pain relief to go on somewhat with 1/2 a life was almost taken away twice before the facts were known. Then I realized all the commercials, newspaper and, online headlines of of “Opioid Epidemic” was going to be bad for all of us ghosts, that’s what I feel like when I have no relief from my chronic pain. It makes me afraid…My first amendment right to “Life, Liberty and the Pursuit of Happiness” is being ignored.

  18. Jean Price at 12:14 pm

    I really STILL have such a hard time understanding all of this! From a medical perspective, NONE of it makes sense!! Pain happens! It has been part of human life since humans walked the earth! We have several appropriate, time proven, helpful medications to alleviate it or at least reduce it to a bearable level! And the vast majority of people DO use their medications wisely and compliantly….pain medications AND other medicines too! Period!!

    THIS ALL “should” mean there are NO problems with pain care! Yet there are SO MANY problems for patients now, from so many different and equally restrictive perspectives! It is truly MEDICALLY unimaginable just how in the world this could have come about AT ALL!! Something is really messed up!! And we seem to be the only ones who know that! In fact…we LIVE IT!!

    So the core issue here is can be NEITHER pain NOR the medications…but something ELSE entirely, WHICH is drastically influencing our pain care…or the absence of it….and ruining the lives of so many innocent people!! We all know there IS greed and power and plain stupidity mixed in. Yet, what is the REAL GOAL here? No one in their right mind could possibly think reducing pain medications across the board and leaving millions suffering in the wake of these “gestapo” efforts could ever hope to decrease HEROIN addiction and overdoses of illegal drugs! This is too absurd for even the least medical mind or the least educated government officials to believe! The two DO NOT intertwine!

    One is about legal medications used by patients so they may function and live with less pain. The other is about illegal drugs which flood our streets to be used by people who want to either escape reality or dull their own mental hurts, or possibly just experiment to see how it feels to be high! NO POSSIBLE CORRELATION HERE. NONE! NADA! So how DID we get here? And how can we EVER talk sense to those who follow THIS senseless plan?

    I think we may have arrived here partially because some high level CDC individuals wanted a bigger budget and more power…so they decided to throw their hats in the ring to “fight” a basically un-winnable war! (Job security, for certain!) The war against drugs…and they did little to nothing to DIFFERENTIATE ILLEGAL STREET DRUGS from PAIN MEDICATIONS, used for a specific MEDICAL reason by a compliant and law abiding group of people WHO HAVE DAILY PAIN!!! In fact they actually INCLUDED pain medications in their quest to stamp out drugs!! AND have gone so far as to label those innocent people as addicts. Unbelievable! Bordering on evil, I must say!

    So, citing absurd and deceitful COMBINED overdose statistics and skewed all-inclusive figures to include illegal drugs used in addiction…they fashioned an EPIDEMIC where there is none! And of course they obviously had the bucks to publicize this and gain much support…both publically and with those in the government. And no one questioned their motives or sought the truth! Or wondered about the lies they told! (Except us!)

    Because they all knew addiction IS an issue in our country…and it tears families apart. Yes, it does! Yet, PAIN DOES NO LESS…and yet they didn’t even consider… or perhaps just didn’t care…what would happen by way of the massive collateral damage to those in pain. Because, lets face it…we ARE high maintenance medically…and we COST lots and lots of money!! We are mostly unproductive members of society! PLUS, we have NO power base OR stamina OR funds to fight this!

    And we all have likely heard about the conflict of interest of some CDC officials…actually owning drug rehabilitation facilities and being in league with the powerful pharmaceutical industry….who also gain by marketing less effective new medications and various devices! We have much against us and little for us, it seems! Except the truth, which now seems to somehow matter very little to those with the power to stop this! So, WE are left untreated, at risk…in UNNECESSARY PAIN because of this warped mindset which has meant our medications are taken away entirely or reduced to less than therapeutic levels!

    And yet this is ALL “supposed” to prevent illegal drugs from destroying the lives of addicts! Right?! NO, it never will! This is beyond absurd…it’s Twilight Zone material for a bizarre episode of a weird Big Brother type future! Only sadly it’s real and it’s NOW…and happening with even greater consequences to us…the ONLY people who are most definitely affected, besides our physicians!! And of course, there are also those making a profit from our misery! Yet since illegal drugs and addiction seem to be flourishing, and are more uncontrolled…there still seems to be NO CALL WHATSOEVER for reassessing all the CDC’s harmful actions! Except of course from us, who seem to have little say in our own welfare and treatment plans!

    Let’s talk about those physicians, too. Pain is not “fun” to treat when it’s long term and from incurable diseases or traumas which create lasting effects! There are no warm fuzzy feelings for doctors in treating persistent pain! They can not bask in all the good feelings of accomplishment of really helping their patients…by “fixing” them…which is the biggest goal in medical care. We are for the most part, UNFIXABLE! Beside, don’t forget…people who want pain medication CAN NOT be trusted…right?! No, wrong! People in pain really CAN be trusted to use their medications as directed, with very few abusing them!! Yet, physicians through all time have dealt with people BEING DECEITFUL…JUST wanting drugs! And of course, this still happens.

    Yet, it really doesn’t take much to separate out those “pretenders”…maybe some DISCERNMENT and A LITTLE TIME, plus a thorough PHYSICAL exam and ample HISTORY taking. However, doctors by and large have lost the art of discernment…or just don’t take the time. AND they also have lost the art and practice of doing in-depth physical exams, AND LISTENING CLOSELY TO PATIENT’S HISTORIES…I suppose due to all the technology available to guide them in diagnosing and figuring out their patient’s care needs! So it is much easier…and MUCH less risky…ESPECIALLY given the DEAs heavy footed policing oversight, to just give up caring for those in pain! And we can’t forget…time IS money,

    So, many doctors often don’t take the time needed to truly asses the person’s real needs, and in so doing…find those who would be ONLY trying to deceive to gain access to drugs! Most doctors have stopped overseeing their patient’s long term pain issues and no longer will prescribe appropriate medications! This means our family doctors and internists, who are MEANT to have ALL our care needs under one roof, have STOPPED prescribing for their patients with persistent daily pain. In fact, many don’t even treat acute pain appropriately, with the medicines available to help their patients! (Maybe this will ALSO gain us some attention one day, or else WE will be BLAMED for those with acute pain NOT receiving the necessary medications to help them! Likely the more probable outcome, given how we have become the real outcasts!!)

    So, Pain Manangement and Pain Clinics sprang up to answer the call…many run by anesthesiologists who had little experience with pain OR with any un-anesthesized patients!! Not exactly the type of doctor to treat all the complexities of care those who live with daily life limiting pain face! Many are “injection” oriented, and some even lack formal training in all the various and many modalities of pain care. Often they are also under the umbrella of a hospital group…and beholding to chief financial officers who can THEN “guide” their choices of care to concentrate on a number of more profitable procedures, regardless of how risky or ineffective they may be compared to effective opioid medications! Because prescribing opioids NOW is to be avoided!!

    Yes, this all sound like a nightmare?! Because it is! This has all grown and morphed into the most absurdly complex and mentally taxing, abusive, discriminatory, and expensive type of health care possible for pain! And there truly is no end in sight! Letters and talks and face to face visits have been happening for years and years…to hopefully let government officials in on what’s happening, so they could help stop the craziness! Yet, we’re worse off NOW than we were in the beginning…regardless of all the efforts of well intentioned and hard working advocates!! And people are now dying from untreated pain. So doesn’t MORE of the SAME seems a little useless? I’m afraid IT REALLY DOES to me!

    What about instead….some major lawsuits, maybe well publicized sit-ins in some of the more abusive doctor’s offices, MORE public outreach, more media blitzing, a BIG…and again highly publicized… fund drive, concentrated efforts to find a well known national spokesperson to champion ALL of us…including our veterans, who are treated abominably. We could DESIGN a really specific, concentrated, and cohesive effort TO UNITE…to join ALL of our MANY pain groups in a large COALITION…to add power, funding, more clout, perhaps even some government officials and physicians who are sensible, more research, AND receive more public support, and more patient support!!! It COULD happen…but sadly it DOES NOT, for a variety of reasons which I have to think are little to do with practicality, it seems…and much more to do with egos and power struggles within our groups!! I don’t see why. There is enough pain and enough jobs to work against what is happening to go around, for sure!! So why can’t we?!

    I and others have been suggesting this same thing, saying it for several years… and yet I see less copoperstive measures and more problems with people not receiving appropriate care…and more of us reduced to being home bound or bed bound, suffering so unnecessarily. I am like many of us…tired of all the rhetoric, little action, and NO appreciable results! And seriously, we aren’t the type of people who can take aggressive physical actions to promote our cause…especially for any sustained length of time. For the most part…things like attending huge rallies and picketing government offices or even just following through the contacts who might respond to a meeting are difficult or entirely undoable! Many good people have sacrificed their health and well being and are in more pain, from trying to fight the good fight…yet they may easily become unable to raise their voices at all or for a long time!!

    This is what can happen with pain! We do need to concentrate primarily on our own physical limits and take care of ourselves…or else we lose! Big time! Unless we have the numbers to assign double or triple duty in case one of us becomes unable to continue in some effort that is started, we don’t really have the stamina to see things through very often. Yet I think we could do this, if we had groups assigned to one particular area to concentrate on…instead of everyone trying to keep up with ALL of the many different areas we need to address and all the changes still taking place!!

    So can we do better? I really don’t know…but it’s doubtful…UNLESS WE JOIN FORCES! And it looks like we could at least try to do this! And I’m so ready to see something happen that actually helps us!! Please listen up…ALL of our many groups who work to support us! We need you to partner TOGETHER, TO UNITE with each other AND with us…FOR US ALL. I truly don’t see anything else that stands a chance to help us stop what has become a WAR AGAINST US who live in pain! And I pray WE ALSO will come to our SENSES TOO…and UNITE. Otherwise, I believe it will be a long time before ANYTHING changes for the better…for any of us. And we will likely lose MORE along the way…when even one more lost is too many!!

  19. BL at 5:29 pm

    Robert, it is up to each doctor how they prescribe for their patients. Unfortunately. most doctors blame their choices on the government. Huge amounts of money and time go into educating and training doctors. Doctors are not going to lose their license because they don’t prescribe a certain dosage to certain patients. That is not to say if a doctor does not prescribe responsibility they won’t get into trouble. But that does not mean they lose their license to practice medicine. In some situations, a doctors license in suspended for a short time while the state medical board investigations allegations. Unfortunately. the media falsely reports this saying the doctor lost their license without stimulating it was temporarily suspended.

  20. jo carolan at 8:48 am

    I have really tried every thing offered for RSD in my dealings with this madness after 28yrs. I am tierd can not get treatment. big problem 60yrs old guess I had a good run.

  21. CathyM at 10:15 pm

    I modified the letter to make it personal and sent it off… I am becoming cynical about the chances of being heard, but I keep trying. Here’s another weird bit of opioid panic (literally):

    http://katu.com/news/nation-world/ohio-town-issues-new-strategy-consequences-in-heroin-battle
    WASHINGTON COURT HOUSE, Ohio (WSYX) – People who overdose from heroin are facing some new consequences. If somebody is revived by police or medics with Naloxone they are being charged with inducing panic.

    Police are partnering with prosecutors to try a new way to battle the heroin epidemic and get addicts help. City Attorney Mark Pitsick said “It gives us the ability to keep an eye on them, to offer them assistance and to know who has overdosed. Sometimes we can’t even track who has overdosed.”

    Inducing panic, indeed! That’s a twisted use of an old law, it seems to me…

  22. Marianne Davy at 1:07 pm

    I agree with the first poster. I do not enjoy taking pain medications. They don’t even take all the chrome ic pain I have suffered with for 16 years. Headaches from 2 genetic aneurysms & 2 craniotomies. However, just to wash a dish occasionally, I have to take these medications and continue allowing doctors to try this or that with me in the hopes something might work. If the legislators ever had to suffer through even my lowest level daily headaches, they would view this issue differently. I have never, never “doctor shopped” lost a paper prescription or asked for an early refI’ll in 16 YEARS! I think they should deal with those problems on an individual case by case basis and not put us all in the,same group.

  23. Tim Mason at 11:15 am

    Follow the dollars Tim. It’s all about money and greed. Everyone must cut costs and companies must show a 20 profit increase each quarter now not annually.
    How do you think these insurance execs and drug CEOs, CFO drive 6 figure cars and have 9 figure homes?
    If that ain’t enough- It’s bonus time!

  24. Mary Stephenson at 9:39 am

    The people making these decisions don’t know anything chronic pain. Do you think I want to be in pain 24-7 take medication to affect my body forever.
    My dr and I discussed some quality of life verses quantity of life when we had noting to give to me after my surgeries except medication. And till this day there is not cure for chronic disease, when there are over 3 million on medication for chronic pain. You send all the soldiers off to war and will not help them with pain medication when they return. You can not separate who gets treated or not treated for chronic pain.
    I say if we have proof that were chronic pain patients we should get our medication. Enough to help you function.
    God help anyone reading this who is in a higher place in government to have a family member in chronic pain. You will cry daily without medication and to see your loved one suffer 24-7.
    30 years ago after I was injured severely at the hands of chiropractic sideway whiplash with her hands broke 1 disc at c5-c6 into 3 pieces. Took 22 months and 28 drs. to discover it was a herniated disk but a chunk of disk destroyed my nerves at c5-c6 which laid in on my nerves for so long that the damage to my right arm is very bad.
    If I’m taken off my daily medication to just get out of bed.
    Who are these people trying to take anymore of my life away. If my meds get taken away I’m going to be a casualty of the CDC. I take my prescription per my dr. and I have all my needed MRIs, C-scans, boxes, boxes of records all the information needed to know that I’m a chronic pain patient.
    Why are we the being targeted to kill us all off when you take anything away from me so I can function. Somewhat!! I want to file a class action law suit against the CDC and whom ever else is involve? Why the chronic patients, we need help to function every moment of our life with help from our medication. It’s (mine) been called sugar pill but it works for a release of about 65% of my pain so I can function to a degree.
    Please take care of your pain patients here in the USA. I feel like the government needs to mind their own business between a dr and their patients. I also feel like they are saving the street adicts and killing off the people trying to be good citizen living with chronic pain. Trying to function at some % to work while in chronic pain. There is something very wrong with this whole ordeal! I was born here in the USA, worked until I got hurt, had 2 neck surgeries, been on same medication for 30 years.
    I want to file a class action law suit.
    Please HELP us chronic patients. You take away our medication and sucide rate is going up. I want to live. I don’t know anything about street drugs!! But I know about the prescription my dr writes for me. Thank you for reading and we will not get help if we don’t try to do something big-like file a law suit for disability discrimination. And more!

  25. Robert at 8:54 am

    I watched both 4 hour confirmation hearings for Dr. Price to head HHS. Over and over I listened to him say that his main goal was to reinstall the Doctor – Patient relationship, removing government from the doctor’s office.

    Now the streets are flooded with Heroin and we still have targets pinned to our broken bodies?

    My condition continues to worsen and the main component is STRESS!!!
    Stress from pain 24/7/365
    Stress from not knowing from one month to the next if this will change.
    Adrenaline constantly being pumped into my bloodstream.
    I don’t sleep because of constant pain, continuous stress.
    President Trump, Dr. Price, can you not hear my crying?

    MY LIFE IS OVER!

  26. Cheri at 6:55 am

    “Chronic Regional Pain Complex, or CRPS, and have suffered with horrible and painful disease for 17 years. It has no cure.”

  27. Debora Farnsworth at 11:53 pm

    I take pain medication to have somewhat of a quality of life. I still suffer even with the meds. If my meds are taken away, you might as well shoot me. That’s what we’d do to an animal. Put them out of their misery.
    I paid into Medicare my entire working life. I deserve to be treated with respect and allowed to live out my old age as comfortable as possible. You take my meds away and you take my life away.
    Thank you Debora Farnsworth

  28. Frank Tavenner at 8:41 pm

    I was unable to personalize the letter because it didn’t allow me to fill that section. This is crazy what is going on. And what for? I understand that only 4% of chronic pain patients are involved in diversion.

  29. Randy at 6:14 pm

    I do not believe that the politicians and government should decide what medicines a chronic pain patient should receive. I am disabled and I take pain meds just to survive. What has happen to our civil rights? Why are the doctors not standing up for their patients? They are afraid of losing their job! Please fight this pain patients take medicine not drugs!

  30. Tim at 5:05 pm

    I have been in a daily/nightly wrestling match for my ability to move without severe pain for over 20 years. I did not see the life of the non cancer chronic pain patient getting any more difficult AND painful. Yet, here comes the attempt along with the CDC “guideline”. I really thought that only Congress could “make” or write new law. Has all of humanity lost the ability to “see” the hardship(s) in their brothers or sisters life? Sad.Thanks for making the contact to the CMS so easy!

  31. Kevin at 4:36 pm

    Thank you for working on my behalf and so many others who have no choice but to live in pain 24/7

  32. N. Payne at 4:11 pm

    Why do we always get this kind of info at the last minute??? We need to inundate agencies and the people spearheading this cruel, inhumane attack on millions of sick, innocent Americans with emails & phone calls. It takes time to get info to allies who can join the fight–mere hours is not enough time! My pain and stress levels have steadily climbed since last summer when my medication was reduced. I’m very frightened that this tsunami of suffering as millions of us are targeted through no fault of our own is going to get worse. I’m afraid of having to face the day when suicide, aka Plan B, is the only option left. God, please help us.

  33. BL at 1:14 pm

    Anyone can send a form letter/email. It is best to make them personal. Explain how this might affect you and why you are against it.

  34. cindy deim at 12:58 pm

    I hope everyone who reads this is called to action. We need to get organized and fight these unjust regulations. Please, everyone. Fill this out!

  35. Jane at 11:44 am

    God give us the strength to get through all of this & move fwd with life. Everyday is a struggle. Might I add that since I was forced to a taper,, presently using kratom short term & does really help but who knows when they will ban this.???

  36. Tim Mason at 11:23 am

    It was for continued opioid use in the Medicaid/Medicare Years addressed at insurance providers.

  37. Kristine Anderson at 9:10 am

    I would add that readers who aren’t familiar with U.S. Pain should be aware that they don’t have to be an ambassador nor an advocate for the organization to respond to the strategy. They can prepare their own email messages. While the organization is well-developed, and I appreciate the call for action and the example email, a response to CMS, to me, is more of a personal nature. For example, as an older person, I am years beyond most alternative treatments for many reasons. And coupled with being a person on disability, I have much stronger words for the fact that treatments are not well-covered by CMS.

  38. Jud at 8:51 am

    I am in Canada, and, unfortunately my country often copies what happens in the US, so, as much as I can, I urge chronic pain patients to speak up loud and clear that people who live with chronic pain conditions are not addicts and are not drug dealers; that medicine is needed on a daily basis in order to do ordinary things, go to school, work, spend time with family and friends. Knowledgeable pain management doctors who prescribe properly, patients who take medicine properly, knowledgeable pharmacists who dispense medicine and who answer questions that doctors and patients might have – this is the team that should be making medical and pharmaceutical decisions. Not politicians, not government officials.

  39. Patricia Davidson at 6:36 am

    I hope and pray this message and the hundreds of other messages written by people who truly understand the consequences of this decision make it to the people who are deciding my personal fate.

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