Please Help, Your Comments Are Needed


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Andrew Kolodny, the Executive Director of PROP (physicians for responsible opioid prescribing) has filed a peitition on behalf of PROP, to the FDA.  He/they want to limit the amount of milligrams in certain herigher milligram opioid tablets.  Kolody/PROP continue to make very wrong, bad and unproven claims, in my opinion and in the opinion of many other health advocates, pain physicians, general physicians, pharmacisits and chronic pain patients. They are trying to get these higher doses banned altogether, which could make the chronic pain patients lives even more difficult and their ability to get prescriptions filled an even more arduous task.

The American Academy of Pain Medicine has written their comments regarding and opposing the afore mentioned petition by Kolodny and PROP. If you aren’t convinced that what’s happening to chronic pain patients is totally wrong and cruel, then please read the full comments written by this AAPM and the comments of all the other patients, physicians and more; already posted for the public to see. Here are a few of the points that the AAPM makes:

  1.  They state that there are false and misleading statements in this petition. That the writers of it have stated that the “CDC’s consensus was that increasing dosages to 50 or more MM#/day increases overdose risk without necessarily adding benefits for pain conrol or function”…..THE CDC made no such conclusion whatsoever. They just said that there wasn’t enough evidence base for the benefits of long term use.  The CDC guidelines were supposed to be for chronic opioid use in primary care settings and do not discuss at all, the use of opioid therapy in the pain management physicians setting.
  2. The AAPM shows us how Kolodny and his minions lied, just outright lied when they said the AAPM had explicitly endorsed the “notion that opioids should be prescribed without an upper limit”.  They never said that, it is a false statement.
  3.   They say Kolodny and co. seek the removal of “ultra-high doasage unit” opioid formulations.  But there is no definition of this at all and it is, according to the AAPM, just a “creation by the authors”. They also say how Kolodny & PROP limits their request and exludes the transdermal medicaions, and this demonstrates the “idosyncratic nature of their concept”.
  4. They prove how Kolodny and PROP literally lie about how children die from these higher doses but actually AAPM says children can die of respiratory distress even at the lower dosages.  They say that these guys are assuming that children are less likely to ingest several lower dose pills instead of a single higher dose pill and that is just a guess.
  5. The American Academy of Pain Management understands that there should be provider and patient education regarding opioid therapy.  There should also be interdisciplinary care for chronic pain patients.  But they also agree that there are times when Opioid therapy is indicated and there can and should be safety measures in place for inadvertent exposures. Things such as Naloxone can be used but not just arbitrary dose manipulations.

There’s more, but I think you get the idea.  The AAPM even states in their comments, that Kolodny & crew have set some dangerous ideas with their “cavalier assumption” that when higher dosages of opioids are required in some patients, that Kolodny thinks that reducing or taking the opioids away from these patients would be “unlikely to result in a significant inconvenience or hardship.” The AAPM says “this could not be farther from the truth”.  In Summary, the American Academy of Pain Management states that Kolodny’s and PROP’s petition, “if implemented, would cause great harm to our nation’s health.”

Please read the petition at the following link:  https://www.regulations.gov/document?D=FDA-2017-P-5396-0001

Please, I am asking everyone who sees this blog post, to pass it on to another person. Then to each person, I therefore ask you to please write your comments in right now. All comments must be in place before February 2018; when comments will close.  But I warn you that if you don’t do it now, today; you may forget and miss a chance to get your comments written and read.

Below are my comments posted October 18, 2017:

Suzanne Stewart wrote:

It is wrong to do this as we are not a “one size fits all” society. Everyone is different and has different needs  I have many allergic reactions to other medications. I have long QT syndrome and so I am unable to take many many medications. Legacy patients should especially be exempt from this craziness.  Also exempt should be anyone for whom a licensed pain Management physician  feels should be exempt! Pain Dr’s went to school  for many years, a very long time, and they specifically learned about pain and how to treat it.  This man, Andrew Kolodny is not a pain Dr. and he did not go to school to learn anything about pain or how to treat it.  He should in no way be directing what is to be done with the chronic pain community.  The pain community is falling through the cracks in this “opioid crisis”.  This crisis is that pain patients are dying daily and committing suicide because of our lack of access to opioid pain medications.  The Cochrane report of 2010, states that “only 1% or one half of 1% of chronic pain patients ever become addicted!”  This man, A. Kolodny is also trying to state that cancer pain is different than non cancer pain. That cancer deserves pain alleviation but chronic pain does not.   But the FDA said that “theres no scientific evidence to this” and they disagreed with him!  So please realize that he is not doing this for any good or helpful reasons. He is not a “good Samaritan” looking out for all of mankind. He has his own best interests at heart and his own treatment centers to make money for him through this crisis for chronic pain patients.  Sometimes the oral transmucosal opiates or the higher dosage of opioids might be somethng that a legitimate schooled pain physician feels is the best for his/her patient(s).  I don’t think there are any pain management Doctors that would give those out lightly.  There would be a reason and they know the reasons why they would be using these medications or analgesics.  If a legal legitimate pain management Dr. feels this medication is appropriate, then allow him or her to be the Doctor! The Government of the United States of America needs to stay out of the Doctors office and out of the patients rooms and records!

The link to go to for making a comment is below. Please, I am begging each and every one of you to go to this link and make a comment against this petition by Andrew Kolodny and the PROP physicians.  All comments are Due by February 18, 2018.

LINK:

https://www.regulations.gov/document?D=FDA-2017-P-5396-0001

Thank you so much!

Suzanne Stewart,

Patient Health advocate, RSD/RPS patient mentor, US Pain Ambassador, WEGO patient Leader and member of ATIP (Alliance for Treatment of Intractable Pain)

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The Opioid Debacle


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Hello Luvs,

Many chronic pain patients, like myself, have legitimate concerns that we didn’t have to deal with a few years ago. Just prior to this Opioid debacle that has occurred in these past few years, we had enough to worry about due to our pain issues.  We worry about finding good and trustworthy physicians, pharmacies that have our best interest in mind, tests that we endure and then pay for; among other things. We have to find a way to arrive at our appointments, possibly find someone to go with us and find Dr.’s willing to help relieve our pain. We just need someone to listen to our ideas, concerns and take our feelings into consideration at the same time. These days we have so much more on our plates and it is adding worry, pain and an increase in suicide to the list.

There are rumors flying on Twitter, Facebook and in the news media, that we have an “Opioid epidemic” in our midst.  Lawmakers and those who don’t have a clue what daily life is like for the chronic pain patient; have just blindly accepted this hype.  I totally agree that deaths from overdose of Heroin and other “street drugs” are happening. It is real and people are dying. I do know that the true “drug addicts” are mixing and/or changing some very helpful pain medications, with illegal substances and making more dangerous drugs that kill.  But taking the small amount of relief away from pain patients is not going to fix the problem. The CDC, FDA, lawmakers and  the Physicians who “don’t have a clue about chronic pain from a personal standpoint”; are taking away truly needed medications that lessen our pain on a daily basis. The chronic pain patient deserves to have some semblance of “normal” life. When they take away our pain medications, they are putting us back into our beds; where we are “sick” persons just waiting for relief.  Hoping and waiting for someone to help us “fix” this Opioid conundrum that is happening around us.

The problem that I have found during my research, is that these groups of people that have “power”; meaning the CDC, FDA etc.; are “lumping together” true chronic pain patients with the average drug addicts. We are not one in the same!  Apples are not oranges; just because both are called “fruits”. Dogs are not cats just because they are both animals. People who abuse drugs and chronic pain patients are not one in the same; just because both are human beings that need Opioids in order to live.  The craziness will not end and drug abuse problems and/or deaths will not be over, by taking Opioids from the true pain patients. The chronic pain community has been living in fear and agony since the new guidelines started. What I’m talking about is a real public health issue that is being made worse and not getting solved.  Denying the chronic pain community the one thing that may give us some small quality of life, is definitely not going to fix anything.

What I have noticed after speaking with a Governor’s secretary, a Senator and officials within my community, is that they don’t realize that there’s a difference between being an addict and being dependent physically. I heard a Senator say that she never thought about how a chronic pain patient may be physically dependent but not be “addicted” or crave the pain medications. They don’t truly understand that Opioids are sometimes the only choice and last resort. Some of us are not candidates for other treatment modalities. Frankly, there are others who just don’t want or cannot have another surgery that might increase pain and medical issues. I was told by one Senator, that we need to be a voice.  They need us to make phone calls, write letters and these kinds of articles. We need them to really listen and then make real changes.

The drug addict needs and craves their drug of choice in order to function. They get a “high” from taking drugs. They mix drugs and change medication from its original form sometimes, in order to get that “high” . A drug addict lives for their daily  “fix”.  The chronic pain patient, on the other hand, does not get a “high”from Opioids. We take prescribed pain medications in order to live some sort of life outside of our beds. We don’t live for the pain medications. We take them in order to have a life with lessened pain. The Opioids give a slightly higher quality of life to some of us and the unbending hand of the Government is slowly taking this quality of life away from us.

I totally agree, that Opioids should not always be the first drug of choice for chronic pain. There are other modalities to start with. But in the end, if the only thing that works for certain patients who live with daily debilitating pain, are Opioids; then these patients should be allowed to have them. The chronic pain patient should be allowed to live without feeling like a  criminal or as though we are “bad” or “flawed” people. We also should not have to take a slew of lesser medications in order to “try and fail” them before getting what a board certified pain Dr. may prescribe as first choice if his /her hands weren’t “tied”. The persons with power to do something about this debacle are continuing to deny tens of thousands of chronic pain patients the only treatment that may help lessen their pain, our pain, my pain.  They are holding us hostage to a life of agony and they need to be informed. Those persons who have the power to help chronic pain patients with this confused issue, are listening to  misinformation. They are looking at skewed  and manipulated data.  They are basing their choices, ideas and guidelines on poor medical analysis and data.

The guidelines for the use of Opioids in the medical setting should be changed immediately. Those persons on the committees who wrote these newer guidelines were those who have a monetary stake in getting rid of these medications. By this, I mean those who own other forms of treatment centers.They are also the “Prop” Dr.’s who have only one point of view and it’s not the same point of view as those who truly know what its like to live with daily chronic pain. The initial’s “PROP” stands for “Physicians for Responsible Opioid prescribing”.  But they don’t really approve of any kind of Opioid prescribing. They and others who wrote the current guidelines, want Opioids eliminated for the afore mentioned monetary reasons and due to the propaganda surrounding celebrities deaths from overdose.  In the celebrity cases, and many other high profile and even low profile deaths from overdose; there were other medications and street drugs mixed in with the Opioids. That is truly how those persons ended up dead.

The guidelines for the use of Opioids with chronic pain patients should be withdrawn now! They should be rewritten by a group that consists of board certified physicians who have true experience with chronic pain patients. Better yet, add some physicians who actually experience chronic pain themselves.  Excluded in the group to rewrite the guidelines, should be anyone with money to gain from getting rid of Opioid medications. Let’s get real! People die from NSAIDS! In fact, I’m not allowed to take them because of my chronic renal disease. Others die from Liver issues from taking too much Tylenol.

At one point, there was a group of U.S. Senators that introduced legislation to  put a federal tax on all Opioid medications! It was called the “Budgeting for Opioid Addiction Treatment Act”. In a nutshell, they wanted to make chronic pain patients pay one cent for each milligram of active opioid ingredient in their daily pain medications.  This money was then going to be used for treatment centers for drug addicts! How ludicrous is that?  Would anyone ever think about taxing my grandfather for taking insulin, because he is diabetic? Would they put a “fine” or so called “tax” on high blood pressure medications? NO! Nobody would place a “fine” or a “tax” on illnesses such as high blood pressure or diabetes, yet the medications taken for those illnesses also make people “dependent” on them. A person can’t just stop taking insulin or they could die! The heart medication that I take cannot be stopped abruptly, or I could have a heart attack! So you see, there are many medications that people may be “dependent” upon. That doesn’t make all sick persons “addicts”. We all take the medications that we need for our diagnosed medical conditions. The drug addict actively wants, craves and seeks out their drug of choice.  Those of us living with chronic pain truly wish that we didn’t need to take any medication. Chronic pain is an illness just like any other.

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