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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We Are Not A “One Size Fits All” Society


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I’ve had a few interviews recently, with people who want to know about “my story” mostly. But I’m finding out more and more that so many in mainstreamed society do not understand chronic illnesses or pain whatsoever.  There are 100 million people living in the USA, who live with daily chronic pain. We truly need to “talk about” this.  I’ve even been speaking with legislators to try and get some of these House Bills to NOT be permanent law. The people who are sitting on these committees do not understand anything about chronic pain, yet these are the persons making the medical decisions for us instead of our physicians. Most or many chronic pain patients visit their pain management physicians, now monthly. The pain doctors are the ones who went to school for many many years to learn about how to treat people who live with real pain on a daily basis. Why are these Bills being turned into laws without the consent of a pain Dr.? Why were there no pain management physicians sitting in on the meetings when the CDC guidelines were being discussed?

The CDC guidelines that were put into place in 2016, were done behind “closed doors” and in “secret”; without any pain management physicians there to guide them at all. No, there was only PROP (physicians for responsible opioid prescribing), including their guy, Andrew Kolodny; who is a Psychiatrist.  He is an addiction specialist, not a Physician trained in the treatment of chronic pain. Why would the CDC set guidelines like these and allow them to be done like this in secret, by a person who is not even trained in the management of pain? Next, these guidelines are supposed to be just that, “guidelines”.  Somehow they have become the “law” without actually going through the right chain of events to become a “law”.  Physicians, pharmacies and others are now adhering to these “guidelines” that were meant for general physicians, not even for Pain physicians.  But some pain management Dr.’s have seen their colleagues have their livliehoods taken away by the DEA now, and they are fearful.  They fear losing their practice and everything that they went to school all of those years  to do.

These CDC guidelines are not the law but Dr.’s are being “bullied” into making them the law in their own practices.  They have famlies and a life outside of pain management. They don’t want to lose everything and I undertand that.  But someone has to stand up for what is good, lawful and right!  We need to remind our physicians that these are just guidelines and not anything that legally must be done right now.  The guidelines, after all, were also supposed to be about stopping the overprescribing of opioids right after an injury or a surgery.  They weren’t meant to take the very lives away from the chronic pain patients; yet that is what’s happening.  People are dying and suicides are rising even though in the last several years, the prescribing for opioids has actually gone down.  Did you know that legacy chronic pain patients, those who were already on an opioid pain medication plan that was working for them, before the  2016 guidelines came into effect; are supposed to be exempt from them? But that’s not what is happening in many cities and states.

Today, in 2017, in our United States of America; people are being tortured. Yes, it is true.  Our service men, the Vets who came back from combat, after fighting for their country, return home to live with terrible and painful wounds.  They were the first to be denied pain medications and now everyone else is following. How can a country let those who lost a limb or more, fighting for them; just live with pain and not try to ease that pain?  If you read the CDC guidelines in the link that I’ve provided above (in the second paragraph), you will be able to read that the guidelines spell out these words “reduce opioids UNLESS THERE IS HARM BY DOING SO”.  So many in our country are now being harmed by these guidelines that are being abused and played out as “law”. Do you know that the elderly in nursing homes are now being denied opioids and left to live out their days in agony and chronic pain at various advanced ages? This is called “torture” and “abuse” and it’s just wrong! Just as it is wrong to make everyone be at the same dosage of opioid pain medication.  We are not  “one size fits all” human beings. Just as 90MME or less, will not work the same for everyone. We all metabolizes differently.  Some physicians & legislators are listening again, to the non-pain management Dr.’s, who think that 90 MME is the highest amount that every single person should be allowed to take, no matter the circumstances.  This is truly torture for patients who are in need of more than that amount.  There are patients who must take more than that in order to have some semblance of a life outside of their bed. They are not groggy or high.  They are just trying to get by and live their lives the best way that they possible. To the surprise of the journalists and legislators that I’ve spoken with, the chronic pain community that I know and love, doesn’t want more opioids for pain relief.  They want only what is needed to get by;  to live some kind of life with lessened pain.  I was asked “If I could have more opioid pain medication, would I want more?” I responded vehemently, “Absolutely not!” If I did not need to take the medications that give me some pain relief, then I would not take them.  I don’t want more and more pain medications.  I only want the amount that is necessary for me to have some kind of life outside of my bed.

Of course, I understand that opioids normally are not the very first course of action for a chronic pain patient.  We have to go through the rigorous pain clinic “steps”.  There are the trigger point injections, different kinds of Nerve blocks, biofeedback and occasional trip to see their pain Psychologist. Once found to “not have an addictive personality” they will try different medications.  There are persons who have tried many non-opioid pain medications and either they got deathly ill from them, were allergic or they didn’t work. The next step is usually invasive and expensive surgery to either get an intrathecal pain pump or a spinal cord stimulator. People have varying views regarding these surgeries and the outcomes. I don’t think anyone should be forced to have an invasive surgery.  One in which a catheter or electrodes are stuck into the patients spine.  The patient is then given a remote control device that controls the amount of stimulation they receive for pain relief (if it works). Otherwise the pain patient has pain medication filled into a “hockey puck” -like device (pump) placed inside of the abdomen area.  They visit their pain Dr. monthly to get this pump filled. The intrathecal pain pump, I was told, is equal to about 1/300 of the amount of oral pain medication. It is dripped slowly into the spinal cord to help with pain. Dangerous granulomas can form and there may be other complications. I must also mention that afterwards, you are then “married” to that specific pain Dr. for the rest of eternity (for the most part).  I also must add that most everyone who has these invasive surgeries, still need oral opioid pain medication for “breakthrough pain”.

There are persons who aren’t candidates for one reason or another and they are not able to get a Spinal cord Stimulator or an Intrathecal Pain Pump.  After trying many non-opioid medications and not being a candidate for either of these surgeries; there are not a lot of other options.  But I want the decision to be between my Pain Dr. and me, alone.  I don’t want the government in my patient room, uneducated in pain management but trying to make all of the decisions.  I honestly believe that me and my pain management physician, who went to school for approximately 13 years, or more, to specialize in taking care of people who live with pain; should be the ones to decide whats best for me. In my opinion, no one should ever be forced to have invasive surgeries; if there is a pill available that has little or no side effects, when taken responsibly.  All medications should be taken responsibly because a person can overdose on insulin, heart medication or anti-depressants. It’s not just opioids that are harmful if too much is taken. Lastly, I was asked if I am “pro-opioids”.  My answer is “No, I am pro-patients”.

 

The Enemy of The Pain War


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I know in my heart, that some of what I had originally written in my first “PAIN WARS” article (9/19/2017 see it in its almost original form below—I did still change a few small details. But for the most part, the original article is below ) in the National Pain Report), are Kolodny’s true “opinions”.   We all are aware of those; because he’s proven his opinions over and over again to all of us. But I made a mistake and there were two issues to which I could not find an exact citation. I rewrote the article with citations down to the details. This time there was no reaction; no response from him? The fact that he thinks Intractable and/or chronic pain patients should be able to be OK with Tylenol or Ibuprofen is just laughable. It reads on the bottle of Tylenol “for minor aches and pains”. Obviously Andrew Kolodny, the shrink/Psychiatrist; has not ever lived with chronic intractable pain. What’s interesting is that he doesn’t treat Chronic pain either!
IF he is not educated in the treatment of chronic paian, then how is it that he is able to dictate what happens to the chronic pain patients?

What I find also odd, in a way, its that he thought what I wrote in the original article was “unfair”? What about what he’s doing to a large number of chronic pain patients? I want to scream that it is UNFAIR that he is responsible for the rise in suicides due to the immediate drop or quick tapering of our pain communities medications that are & have been used as directed and in a responsible manner. He has our communities deaths from suicide on his conscience and on his hands. He is lying to the people, tugging at unknowing, good peoples heartstrings, so to speak. By telling them that these medicines are killing people and they are dangerous etc.; he is getting many of these people to side with him! They are only “dangerous” if misused or taken improperly, just like anything else! Water is dangerous and you can die if you drink too much!
The Dictionary’s definition of “enemy” is = a person who is actively opposed or hostile to someone or something. Also it states that “enemy” is a thing that harms or weakens something else. Well, Andrew Kolodny M.D., may harm us and we may die due to suicide or increase BP and HR from higher pain levels; because of his opinions. This is on his conscience as well. But he will never weaken the strength of compassion and endurance in the chronic pain community of the USA.
What I don’t understand is why can’t the government officials see through him?
Why don’t they see him trying to have “saving the addicts” (certainly not saving the chronic pain patients) as being his claim to “fame”? Why can’t anyone else see that he owns treatments centers with a “revolving door” policy and he makes a ton of money off these poor people?

He tries to tug at the heartstrings of those who have lost loved ones to addiction. Chronic pain management and addiction management are two different areas. Those who have lost someone to an overdose want all Opioids gone now; because someone that they love has passed away due to addiction and /or the misuse of opioids. That’s horrible, terrible and unimaginable to say the least. But Well, now we, the chronic pain community are losing people daily; due to the quick tapering and abrupt ending of opioid treatment to chronic pain patients. Chronic pain can kill as stated in the National pain report article from June 20, 2017. The terrible true fact is that Opioids don’t kill people any more than guns kill people? If you misuse either of them, you can die. If you don’t follow the instructions of a legitimate pain management physician, then you have a higher chance of dying from overdose. People can overdose on insulin that they have in their home for Diabetes. Just as someone on High blood pressure meds, anti-depressants and other medications can overdose if they misuse their medications. We are not children and if we are responsible adults who are doing well on opioid therapy and do not get high, do not ask for more, are not groggy or foggy from the medications, and we don’t take more or less than prescribed; then we should have a right to live our lives in as little pain as possible! Nobody should be forced into having risky and/or expensive surgeries either.

Whatever works for each specific person, is what should be done to allow that person live the best life that they possibly can. If medical marijuana is legal for you and it works, then you should be allowed to make that choice. If acupuncture, yoga or meditation relieves your pain, then so be it. Everyone should leave you to do whatever works for you. But for me, with my complicated medical history, Long QT syndrome and more; the opioids have no side effects and they are still working, without raised doseages.

They need to totally get rid of the CDC guidelines and start over from the beginning. They need to do so with educated pain management physicians and not PROP and /or treatment center owners who stand to make money from the drop in pain medications. This entire conversation has the pain community afraid, panicked and in more pain because of their fear of living in pain or dying because they cannot live with it.
It seems to me that Andrew Kolodny will not respond to the National Pain Report because he knows that Ed Coghlan is an upstanding publisher. He doesn’t allow people to use propaganda or say things that cannot be proven. That Health News magazine has a great reputation and that is because many peoples voices are allowed to be heard. Andrew Kolodny was offered the chance to have his voice heard.  He wont respond because in the pain community, he is the “enemy” and not the “star”.

These are my own private views.

                 Pain Wars – Uncensored 

(*This article was posted originally and then removed because I made a mistake. I failed to post 2 citations.  I rewrote it, changed it a bit. I added some information and subtracted a few items. The end result was posted on National Pain Report on September 20, 2017)

There’s a lot going on with regards to chronic pain during the month  of September. There are events and fundraisers in the name of raising awareness for persons living with chronic pain illnesses.  These are good things and they help dismiss the myth of the chronic pain patients. We are not addicts; we aren’t complainers or whiners. We are real people living with chronic pain and high pain illnesses 24/7/365. The majority of the chronic pain population sees a pain specialist, a Dr. who helps with pain, or we visit a pain clinic and do whatever it is that is requested. Whether it be to urinate in a cup, give blood or jump through any and all of the other hoops asked of us, we just do it. The end result is to relieve our pain.
But our day to day life, as hard and complicated as it can be, is becoming more difficult. This doesn’t help with things such as depression and/or anxiety; which often go hand in hand with chronic pain, especially in these uncertain times. There are things that are happening around us that we feel no control over. Our feelings are correct. I read an article the other day that pretty much says, Andrew Kolodny, a PROP (Physicians for responsible Opioid prescribing) physician and Dr. Jane C. Bellantyne, the president of PROP; both feel that we all need to just, in other words; “deal with it”. Bellantyne says that “patients should pursue coping and acceptance strategies that primarily reduce the suffering associated with pain and only secondarily reduce pain intensity.” They both have said that “patients should not focus on reducing the intensity of their pain, but their emotional reactions to it”. I’m feeling that maybe the two of them need to take a “pain challenge” and be part of an experiment where they somehow feel the pain that many of us feel and they don’t know the time frame for how long they will feel that way? I’m not sure they would feel the same way afterwards, are you?

Andrew Kolodny is a proponent of a law that can detain pain patients against their will. According to the National Alliance for Model State Drug Laws, 37 states already have statutes that allow substance abusers who have not committed a crime to be briefly detained against their will. Often they must find that the person being committed is a harm to themselves or others. Well, that is “substance abusers”, but Kolodny wants to increase that statute to include chronic pain patients deemed to be taking “too many” Opioids. But to Kolodny and others, this can be subjective, what is “too much”? Are we still living in America? If this is the case, then why aren’t we putting people away for having heart disease then, if they continue to smoke? We don’t institutionalize persons who are diabetic and who don’t manage their diets well? (Yes, I’m being facetious here but just to make a point).

Kolodny and his minions feel that pain patients and drug addicts are not two distinct groups. He says “the opioid crisis is about addiction, and the reason that overdose deaths are at historically high levels and the death rate for middle-aged white Americans is going up, is due in large part to the epidemic of opioid addiction with overdose deaths occurring most commonly in people with legitimate prescriptions.” Do we have a buzzer or a gong here? May I push it? Andrew Kolodny you are wrong! The problem is actually illicit, NOT MEDICAL, drug use. A Cochrane review of opioid prescribing for chronic pain found that less than one percent of those who were well-screened for drug problems developed new addictions during pain care. A more recent review put the rate of addiction among people taking opioids for chronic pain at 8-12 percent. What this truly means to us is that all of these limits on Opioid prescribing for chronic pain patients puts us, the pain patients, at great risk of harm. But guess what? It is not going to do much to stop addiction!

We, the chronic pain community not only have to live with physical agony but with this “Opioid Crisis”. The the true crisis is that the chronic pain community is losing access to reduction of their pain. This is affecting the patients work, if they in fact are still able to work. It is also affecting our families, relationships and at its worst, our sanity! The American Academy of Pain Medicine says that there is a “civil war” going on in the pain community. Their president, Dr. Daniel B. Carr, says that “One group believes the primary goal of pain treatment is curtailing opioid prescribing. The other group looks at the disability, the human suffering, the expense of chronic pain”. Our Pain specialists are saying that nothing can be done? We must continue to stand up and keep fighting for what we need. Andrew Kolodny says that in the end, chronic pain patients need more and more opioid medications in order to curtail the pain. But there are an abundance of pain patients who never increase their dosage of opioid medications throughout many years. They are are still getting pain relief. Stanford University’s Dr Mackey said that there are some risks for some people but that “nearly 15,000 people die each year from anti-inflammatory medications like Ipbuprofen. But people aren’t talking about that?” He also feels that “there needs to be a thoughtful balanced approach”. He said “Opioids are a tool-they’re more often a fourth or fifth line option.”

What’s happening right now with this crisis is that pain patients are having their medications taken away “cold turkey” or reduced greatly; thus causing them great pain and torture. All of this just proves how the PROP Dr.’s and others, are taking the CDC guidelines to the extreme and hurting and demeaning innocent people who already have to live with sometimes several chronic high pain conditions. What I find interesting from my own research is that many of these PROP Dr’s like Kolodny and Ballentyne,, have a lack of empathy and also have a stake in making money off of chronic pain patients; in that they own drug treatment facilities. We’ve got the medical wars on one side and then the government people stepping in, who have no idea what they’re doing. All that they know is that “drugs are bad”.