OPINION: “People are Dying and the Government is Lying”

OPINION: “People are Dying and the Government is Lying”

Editor’s Note:  This article was submitted to National Pain Report and published in its entirety.  The content is the sole opinion of its authors.

Notes on a Telephone Conversation with Thomas Novotny,  US Assistant Secretary for Health and Human Services.

By: Lana Kirby and Richard A. Lawhern, Ph.D.

On September 19, 2016, chronic pain advocate and activist Lana Kirby spent nearly an hour in a telephone conference with Thomas Novotny, the US Assistant Secretary for Health and Human Services.  The occasion for this interview was President Barack Obama’s declaration of the week as “Prescription Opioid and Heroin Epidemic Awareness Week.”  The points which Lana offered to Mr. Novotny are central to ongoing efforts to dissuade the US government from being a party to abuse and denial of appropriate medical care to millions of chronic pain patients.   

  • The association of prescription opioids and heroin in a claimed “opioid epidemic” is grossly inaccurate propaganda. The heroin “crisis” wasn’t created by prescription drugs and it won’t be solved by denial of medical care to people in pain. Although opioids are not risk-free, only a small minority of chronic pain patients develop an abuse disorder. Likewise, statistics on causes of death have been manipulated to create an “epidemic” that does not in fact exist.
  • While diversion and abuse of prescription opioids are issues for recreational users of drugs, the huge majority of patients who are prescribed narcotic pain killers are taking these medications solely in an effort to attain their highest level of functioning possible. These are medications of last resort, taken only when other therapies fail and the patient continues to be in unbearable pain. There are no other effective alternatives.
  • Millions have taken opioid medications for years under doctor supervision, at stable doses and with minimal risk of opioid abuse disorder. Some of these people are now dying in agony because their doctors have unilaterally reduced medications known to work well for them – or outright discharged and deserted them to go through opioid withdrawal without help.

As a chronic pain advocate, Lana works with a Facebook group called “Veterans & Americans United for Equality in Medical Care.”   She communicates daily with people who are struggling to maintain their quality of life – any quality of life – despite efforts by the US Centers for Disease Control, Food and Drug Administration, Drug Enforcement Agency and even the Surgeon General, to force chronic pain patients off opioids. These efforts ignore the reality that there are no practical or reliable alternatives to opioids in present medical practice.  But the US government doesn’t care.

Lana explained to Mr. Novotny that she hears from people every day who have gone from almost fully functional to bedbound due to a complete disregard for any humanity toward pain patients on the part of their government.  They discussed — and Mr. Novotny AGREED (in fact said that he was aware of the facts) — that people with severely debilitating disease processes or injuries are being denied necessary medication which would enable them to lead a somewhat normal life.  Yet Novotny seemed totally disinterested in changing this sad state of affairs.

Much of this horrific abuse can be laid at the feet of the March 2016 guidelines issued by the US CDC to general practitioners for prescription of opioids in adult non-cancer chronic pain.  Though phrased as “voluntary”, the guidelines are in fact nothing of the sort.  Pain management specialists accurately perceive that if they violate the guidelines in order to treat patients’ pain, they may be maliciously prosecuted by the DEA on false charges of running “pill mills”. Even if they win, the DEA will ruin them.  As a direct result, doctors are leaving pain management practice.  Many of their patients are being cut off cold-turkey from the only meds that allow them to function.

Adding insult to injury, the US Surgeon General has sent a letter to every physician in America, asking them to continue reducing pain medications to patients who are using them without problems or abuse, in full compliance with the law in all respects.  Dr. Murthy’s letter continues the barrage of misinformation and stigma directed at pain patients in a supposed effort to stop an “epidemic” of opioid overdose deaths. A major problem with this approach is that it doesn’t address the real problem of street drugs, while it sets up pain patients as scapegoats for outright medical abuse.

Lana shared examples with Mr. Novotny of the damage being done by the CDC guidelines and restrictive State laws which reflect these guidelines.

  • A patient was sent home by his doctor without medication after years of using opioids at high doses for pain control. Due to the fact that he wasn’t properly titrated and was discharged without medical supervision, his blood pressure soared.  He became nauseous.  While home alone, he fell in a shower stall, aspirated as he vomited and underwent a massive stroke.  He died at the hospital, leaving two daughters behind.
  • Lana was contacted by phone by a hysterical woman from Pennsauken, NJ who was afraid her husband was going to commit suicide.  He is five years status post-renal transplant and suffers from severe peripheral neuropathy, rheumatoid arthritis and a host of other ailments.  He was in ICU in December when his medicine was cut by 50%.  He is now off all pain medication and is completely bedridden.  In fact, he has pressure ulcers (bed sores) on the bottoms of both feet.  This lady cannot take him to the emergency room, because it is widely known in New Jersey, that no pain relief will be afforded; rather he may be committed to a lockdown facility as an addict.

Mr. Novotny offered no suggestions on how to help these people, other than calling a suicide hotline.  He appeared fully aware that cases such as these are happening routinely all across America.

The discussion then turned to the National Pain Strategy.  After years of work by US government inter-agency working groups, a comprehensive strategy for pain research, education, and treatment standards was published in March 2016 – shortly before the CDC opioid guidelines.  The pain strategy has effectively disappeared since, buried in the controversy over the CDC guidelines.  It isn’t funded.  And in Mr. Novotny’s opinion, it won’t be funded, absent a very large showing of people in severe pain and suffering, along with thousands of letters to Congress.

According to Novotny, no rush will be placed on the National Pain Strategy until pain patients make it politically too expensive to ignore.  He compared this situation to the attention gained by the “Black Lives Matter” movement, when activists were able to form a strong protest.  A major difference is, of course, that black activists are not the frail, the injured and the devastatingly ill who are physically unable to speak for themselves, and socially isolated from other people who might speak for them.

Lana has followed up this teleconference with email correspondence directed to both Mr. Novotny and his boss, Sylvia Burwell, the US Secretary for Health and Human Services.  She has outlined her understanding of the telephone conversation and invited both to speak at the Washington Rally Against Pain to be held on the Ellipse (Presidents’ Park) on October 22.  So far, neither of these folks has chosen to respond to the invitation.  Given the attitudes expressed by Mr. Novotny, we cannot be terribly surprised at their disinterest.

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Rae: to Sandy & Lana etc.

First, I want to thank Lana Kirby for her relentless efforts & insight in regard to pain patient’s and veteran’s fight against the inhumane and unethical treatment we’re facing all across the country. Also, Dr. Lawhern and many others. This article (& commentators below) lit a fire beneath my rear! Without these compassionate advocates, our stories, fight and voices, will go unchallenged. We need many in our corner to help champion our cause!

Sandy: THANK YOU for writing letters and proving, “if you (& me as well) can do it, we all can!!! Solicit the help of a friend or family member if possible. You are absolutely not alone. We are in this together and you do not have to be an eloquent writer to verbalize or convey our message! You hit it out of the park ma’am! You know why? Because your message came from your heart! Speaking from the heart is the key!

I have nottah to report from my reaching out other than an automated (I’m sure) response fr: the Trump campaign to join their campaign in my state & make calls
Days before the election. Prior to this, a message stating they received my letter & someone would be contacting me soon! Not holding my breath! This is a crisis no-one wants to touch with a 10ft pole!

The pros here: Tom Price has been appointed to the head of HHS. He’s an orthopedic surgeon, but hands will be full of repealing/replacing AHC/OC!! Dr Carson still hangs in the balance.

The Cons: president elect has been personally touched by addiction. His brother died from alcoholism. Not sure where his stance will fall on PM.

Thanks again Sandy-not just for your letters but for sharing here. I know it’s hard on you! Im still remaining somewhat hopeful that stories like your & ours will tug on just the right heart strings at the highest level of our upside down government & state of affairs where CP is concerned.

Tim Mason

Dear Sandy, This is an Excellent synopsis of your health, both mental and physical. I totally agree with your surgeon general suggestion. When I picture the surgeon general, I see a graying old physician with years of personal experience, having attended many seminars and written countless papers which have been published in peer reviewed periodicals.
I would like to give my 2 cents on him and his views but I would wind up giving about $3.56 cents worth of opinion.
Best of luck to you and those of us who are in the fall of their senior years.

Sandy M.

I’m rather new here and cannot type as elegant and stimulating as those of you due to a pain syndrome I have as the result of a hemorrhagic stroke in the thalamus 16 years ago, and after being a legal secretary for over 30 years or more, have shaky hands and lost what great vocabulary I once had. Before the stroke I suffered from back pain, and went to pain management for years for facet injections several times, all kinds of different injections and procedures, nothing ever helped me. I am in pain 24/7 as so many others of you are and understand and am so scared what is going to happen. My neurologist who has taken care of me for this “Central Pain Syndrome” has had to retire. He is in 80’s anyway and said he will be unable to prescribe hydromorphone for me anyway. It is only 4 mg., the lowest dosage and which doesn’t touch the pain as I wish, but it gives me an hour or two of relief…..not complete in anyway free of pain, but I can get out of bed and some days to a load of laundry and visit with my grandchildren. I was 53 when this hemorrhage hit me in the “thalamus” part of the brain, some people do not have pain, many others do and it is an invisible monster, horrific, undescribeable pain I have ever had in my life. I finally found out my painful back problem was from Scoliosis, my entire back looked like the letter “C” and this was after years of pain management doctors telling me it was my L4-5, or my L3-4, no it was my L5-S1, these injections will help and for 12 years, I went thru so much, a diskogram, one Dr. got too close to my spine and I had to have a Blood Patch done. I finally found a terrific surgeon at a university hospital that took about 24 views of my back and indicated to my husband and I that if I didn’t have surgery, I was going to be in a wheelchair, paralyzed or bedridden at the least, which as I told him, I was already at that point. I put off the surgery, afraid it would make me worse, you hear all the horror stories told and I know they are true, but I finally after 3 visits to him and more x-rays that indicated how fast the Scoliosis was progressing, decided to give in and have the surgery. Of course, thankfully there is a number of tests done before the surgery itself. The first test on the treadmill where they let you go slow for awhile and then they insert the dye or medication, whatever it is called, made me so sick, my head felt like it was going to explode, and before my stroke I had excruiating headaches, but I assumed it was sinus and kept buying OTC medications which never helped, but I kept trying!, The… Read more »

Rae

START WRITING LETTERS!
I knew this crack-down was coming when i saw all the news coverage about the pill-mills in Fla. & then read about the CP patients doing the pharmacy merry-go-round! I’m from another state & My orthos nurse told me during this time (i was waiting to get into a new pain clinic, after loosing my 10+ yr doc) …we cannot treat you, because it will draw up red flags! Only prescribing & limited for surgery! If you knew my past/ future surgery history & many conditions; well it’s shocking! This was in 2013 & I remember what my sanctioned pm Dr. Told me: this heavy hand comes in 10 year cycles & its going to get really bad for a long time before it gets better! I was in a daze & thinking…its going to get bad: i was hearing this from every corner! Well folks: here we are! 2017 will be impossible to find any care: compassionately! My relative w/stage 4 cancer has been counciled by relatives about being addicted! Seriously–they drank the kool-aid! We have a small window of time left!! All I’ve been doing is writing & writing, but im just a dot on the scale of what could be(?) ….we are justifiably angry & maybe thats what it will take!

Tim Mason

This is very deep. There are books written about how insurance companies buy doctors, set them up in a practice. They are trained to give disadvantaged people a run-around that they do not have the time an money to take care of. Eventually these people due to lack of funds and gas money simply tire out and fall off the grid.
All of this is done to keep insurance revenues high and steady to keep stock holders happy. I believe Dr. Nagel talked about this in his book “Needless Suffering”

Pharmacist Steve, The DEA is out of control. They have failed miserably in the war on drugs and targeting those who are legally using pain meds for pain conditions is a lot easier than stopping those who bring drugs over the boarders and deal drugs on the streets. Their trying to show there is a reason for their organization to still exist! The BS they tried to pull on kratom is yet another BS attempt to try and show they are doing something. i have been using kratom for 2 years and it is a life saver for me and so many others.

Rae: The time is NOW!!!

Has anyone thought about contacting Dr. Ben Carson? The only method of contact I’ve found is his former campaign site! We (CP PATIENTS) are millions of voters & he’s an advisor to Trump(we need to all contact his campaign-i did) Whether you care for him or not is irrelevant-we need to be non-stop in our efforts! Iv already reached out to a prominent advocate who works w/law firms out of NY. She represented & gave a voice to many here in my state/town where my family is from & was great in shedding on this issue in the national spotlight & this situation ended successfully! This article is astonishing to me. The comments also. I lost my pain dr. When this witch hunt began bk in 2013 & I’m going through it again. I have multiple cp conditions & surgeries. I cannot believe Obamma has been behind this & my days of non-stop research is turning up the same information! I can’t help but think this is due in part to Obamma care also. We need a class action lawsuit & a relentless effort in making our voices heard to through the best sympathetic avenues! This constitutes a civil injustice & blatant discrimination against defenseless cpp! CONTACT your attorneys: 1) send stories/links: this is a great site 2) ask for legal advice: civil, humanitarian, medically ethical questions in regards to a class action (is it possible?) 3) if we can get legal representation: we will have a monumental task in rallying millions of CP patients! Listen: the time for talk is over: we need to fight for our dignity & rights!! The time is NOW!!!! Any efforts I’ve seen are being disregarded thus far! This is our fight & we are many & will not be ignored!!!
—–

I’ll tell you what is really stupid…in their efforts to try and supposedly fight the war on drugs, the CDC has come up with these ridiculous guidelines, that don’t even effect the addicts and people illegally using opiates and drugs instead the guidelines will affect all of us chronic pain suffers, who need these prescriptions in order to function in everyday life. What will end up happening is it will force us to either chose to curl up in a corner and die somewhere or we will end up out on the street trying to obtain the help we need to function everyday. It will force us, as law abiding citizens to become criminals, because we will end up having to seek out a means…any means, of helping us with our pain. The DEA ansd our lawmakers have been fighting the war on drugs, since Nixon was in office, and has there been any improvement on this issue…hell no! because the policy’s they are coming up with and the plans, such as this one to take our pain medications away, instead of concentrating their efforts on those out on the streets who are actually the ones abusing these drugs, they are targeting us, who really aren’t a part of the drug problem at all…they have no idea what they are doing, and that is why in all these years the drug problem has gotten worse instead of better. I think the CDC and the DEA, especially the DEA need to be abolished and this problem needs to be handed over to someone more competent who can actually assess the problem with illegal drug in this country, with more knowledgeable tactics. As I said taking our medications away from people who need the medications and use them responsibly, is only going to create a bigger problem with illegal drug use, because some of us will find away to medicate ourselves one way or another. We are being forced to do what we must do. This is all so damn stupid.
I have another question that kinda isn’t part of what this article is about, is there anyone on this forum, that has tried or currently has a spinal pain simulator for back pain? if so can you please email me how it works for you or doesn’t work for you, I may be thinking of trying one. A high frequency one for back pain that doesn’t respond to anything any longer. Steroid shots and trigger points no longer work for me, pain medication only barley does anything, and this may be the only option I have left, can anyone tell me if they work? my email is kathyovercast57@gmail

Cynthia

Right on Tamara Johnson-Scott…. Obama set up his ACA to go into crisis mode right after he leaves office. Have you seen what happens to Medicare in 2017??? Outrageous. Clinton is a third term of Obama.

Tim Mason

I too commented earlier. Complacency has taken over the world. The “It’s not my job” mentality. It is as though a virus has infected all forms of government. It sounds as though your letter was read with “selective reading” and passed on to someone else to handle. The company I work for is falling apart because of these attitudes. Corporate CEO and stockholders used to shoot for a yearly increase in revenue of say 20%. Now, it every quarter. Do more with less. Everyone including “congress” is doing the minimum to get by: Keep getting all the perks and salary.
All forms of media are earning money by spreading “misinformation” about addiction and chronic pain patients being one in the same. Even the surgeon general used a sentence. Other than being an ordinary doctor he is not qualified to be the Surgeon General. He was a green card holding MD. Trumped that up with a stent in the military. Got recognized by Obama as a minority and you see nepotism come into play.
We need some new “Watch Dogs” for the DEA that has obviously overstepped their authority and no one is going to do anything because “That’s not my job”.
Reminds me of that movie where the man sticks his head out the window and says “I am mad as hell and I am not going to take it anymore”

I know it’s not a political post either, but I can tell you one thing…Hillary is just another Obama, except worse!!!…I wrote a letter to Trump in regards to the DEA trying to ban the herb kratom, that so many chronic pain suffers use to help control their pain. A 100% safe alternative that has actually gotten people off of opiates and even heroin. An herb that has helped me to trim my opiate use down to almost nothing.. Kratom does not have opiates in it, but it is able to act on the opiate receptors in the brain and does and amazing job in pain relief. The DEA tried recently to ban this herb, but the kratom community launched and all out fight against them and now has congressman and senators from all over the country helping us fight the DEA. Well Trump is standing behind us in our fight, so I would say that Trump would be on the side of the chronic pain suffers and against what the FDA, and CDC are trying to do to us….Just a notation for thought before you cast your vote, I’m almost positive, Hillary wouldn’t give a **** about our issue where-as I believe Trump would stand behind us in this issue…..just food for thought….

connie

Danny. SNAFU is exactly what we have here though it has been the plan for at least the last 8 years. End of life counseling isn’t just for the dying anymore! By treating drug addicts and hanging those of us who properly utilize pain medication out to dry the government is ensuring more control over the citizens of this country. It’s much easier to control someone who is drugged up to the point of not caring than a someone who is a thinking and caring human who just asks for proper medical care!

Danny Elliott

I know this is an older thread, (and I’ve already commented 2-3 times) but it’s been resurrected recently, so I re-read the article. Lana Kirby wrote the following: “Mr. Novotny offered no suggestions on how to help these people (doctors suddenly taking people off their meds), other than calling a suicide hotline.” This triggered a memory that I’d like to share. Before the CDC controversy began, President Obama made a statement to the press expressing his knowledge of people suffering in pain and he supported them receiving the medications they needed to deal with the suffering. (Hindsight shows that he was playing politics, knowing what the CDC was about to do.) When I read about his statement, I was overjoyed that our leader was supportive publicly supporting us. Then, after the CDC’s actions took place, I searched on the Internet for a way to contact the President and found an email form on his website. So I proceeded to write the email, praising him for the supportive statement he’d made and asking him to use his Presidential powers to do something about the CDC “guidelines”. In the email, I explained my situation, told him how I would be affected if my medications were taken away and how I wouldn’t be able to live a “normal” life without them. That was it. About two weeks later, I received a phone call with an unfamiliar caller ID, but I answered it. Get this: It was a call from a “Suicide Hotline”! Once I got over the shock and the caller explained that, because of my email to the President, they were contacted by the White House and ordered to contact me. I was livid! I could barely control my anger as I explained what I wrote to the President and that, in no way, was I “suicidal”. The caller was very understanding, explained that he was told to make the call and he would be sure to pass along that I wasn’t at risk of suicide. The call ended. THEN, about two weeks later, I received ANOTHER call from the same “Suicide Hotline”! The caller had no idea that I’d already been contacted previously and was calling because of orders from the White House! This time, I went off! This is the government that is responsible for the limitations on narcotic medications?! SNAFU is a famous acronym that, I think, came from WWII to refer to military leadership (like our current government) screwing things up with outlandish and ill-advised regulations and orders. SNAFU = Situation Normal All Fouled Up. (“Fouled” is a nice version of the word normally used.) The calls from the suicide hotline is a PERFECT example of what happens when the gov’t gets so big that it tries to regulate everything with a one-size-fits-all solution, which, in turn, creates a big SNAFU for everything and everybody. I know that this is not a place for political discussions, but if the upcoming Presidential election results in a continuation of the… Read more »

I agree with Danny, a very well written letter and very to the point. I have lived with chronic pain for 30 years. I take my medications exactly as they are prescribed, I am never early for my appointments for refills and they will never urine test me and find and over amount in my system. But over the last 6 months they have started decreasing my medication and I am the one suffering the affects of this. You are absolutely right, these people have no idea what it is like to live with pain 24 hours a day every day. With the new guidelines the FDA and law makers have come up with, pain management doctors are tapering pain patient’s medication with the intention of taking us off of medication. I can not live without pain medications. Even as of now, the dose I am on, I’m still in pain, but it is tolerable, but without medication it will not be tolerable. 2 years ago I found and herb that is completely safe and that works wonders in helping me and many others with chronic pain and many other chronic illnesses, it is called Kratom. This herb has saved my life.. I would suggest that you google all the information you can find on it, but know that some of the information you find will be bias, because currently we (the kratom community) are fighting for our right to continue using this herb. on Aug. 30, 2016 the DEA filed a notice of intent to ban this herb in 30 days and list it as a schedule 1 “drug”. Kratom is not a drug, it is and herb and it is completely safe. It has no opium in it but it is able to act on the opiate receptors in the brain and give amazing pain relief without the “high” associated with opiate drugs. As a matter of fact, many lives have been changed by kratom as it helps many people get off of heroin and it helps people who do have addiction to opiate pain pills. The kratom community has been fighting the DEA on this ban and currently the ban has been suspended indefinitely. I can’t believe that in the midst of what lawmakers call and opiate epidemic, they want to fight us and take away an herb that can help people who suffer from chronic pain. We will continue to fight this ban and fight for our right to use and herb of nature to treat ourselves. I urge you to research information on kratom and consider trying it for your pain, it truly is and amazing herb. It is related to the coffee family and grows in places like thailand where they have used it for centuries. It can be purchased on line from reputable vendors although because of the recent attempt at a ban from the DEA a lot of vendors shut down sales, but when the ban was called off a number of… Read more »

Danny Elliott

Chuck, I want to say a few things about your incredibly well-written and right-on-point comment. First, when you wrote about being 1 of only 3 patients left that your doctor is treating because of the liability he/she faces, I literally got a pit in my stomach. That’s exactly what I am “petrified” about happening to me. However, I have to tip my cap to you on being “undermedicated”. I was in that category (however, not by choice) from 1991-2002, but then I found my current pain mgt doctor. So, for the last 14 years, I’ve been getting the strength of medicine I need, which is quite strong. If my doctor decides to quit pain mgt due to the liability of the profession, I will never find another doctor who will continue my pain med regimen. And the DEPENDENCE (not addiction) my body has developed will then add another high degree of suffering that I’m not sure I can live with. Second, I have great respect for the life you’ve led to meet your responsibilities for your family and our society. And being born and raised in the town that hosts Robins Air Force Base, I am sincere when I say “thank you for your service”! Finally, you put into words things that I haven’t been able to express: criminal neglect and morally reprehensible – being seen as a defective stereotype – having “pain suits” developed so that doctors, government officials, and even regular people who look down on us can wear them for 1 week every year so that they can experience what we live with every day. Thank you for such a wonderful comment. Please try to continue to be a part of the discussion that we have here on this website. You will be able to contribute so much and probably help many people.

Chuck

Hello my brothers and sisters who suffer in pain. As Danny September 24, 2016 at 9:24 pm said above so well, “I am petrified because of this situation.” After 14 years of opioid medication I am a walking study. I lived in and with pain for 20 + years before ever touching even a low dose percoset. I am still disabled by the pain now but that is because for 14 years I have been “undermedicated” except for two years when I was actually on a dose that allowed me to work and have very good function. No bad side effects, as my body and brain adjusted after awhile. No rapid tolerance problems and the meds still work as they have for more than a decade of daily use. No new pain pathways at all in fact some of the pain I used to have has lessened over time. I am still under medicated thus inadequately treated. I know exactly where my pains originate, how much Rx dose gives me how much benefit, am never early to the monthly doctor appointment and am a poster child of compliance. That said I am one of only 3 pain patients that my doctor now sees as he “got rid” of all the others. Too much liability. Just we few who jumped through every hoop to keep this long term relationship going are still with him and that is tenuous at best. Who am I ? A retired public servant whose spine quit him before he wanted it to. A disabled veteran injured on duty at the age of 22 in a bad training accident in my first actuve duty 4 year Army stint, and who continued to serve honorably for 9 more years of reservist duty, with a top secret BI clearance for nuclear surety. A man who has raised four children in the same town now for 30 years and successfully. A hard working average Joe who is honest and always tried to give 110% in my work, for the taxpayer, and for my family. So how am I now treated? Like a drug seekng addict. Always suspect by everyone, even family, friends, doctors .. everyone, and even though in moderate to excruciating pain every day of my life am humiliatingly subjected to urinalysis and brow beating by ignorant, arrogant and frightened people who cant think there way out of a square box. “Thank you for your service” are words that are hollow and empty as what I truly hear is “please stop bothering us and just go away quietly somewhere and die”. I could prescribe myself a proper dose and decrease my pain by yet another 50% and improve my daily functional time and capacity dramatically, but NO! They would rather torture me. Like water torture just enough oxygen to keep me alive but not enough for comfort and with the fear of drowning ever present. It is criminal neglect and morally reprehensible. Luke some kund if evil nazi experiment… Read more »

Danny Elliott

#1 – To Dan: Thank you for your comment. While it didn’t provide “good news” for us, what you wrote about your experience with the “higher-up” person confirmed what I, and many others, thought was the common opinion in Washington, DC. So, I am paranoid, but now I know that I have legitimate reasons to be paranoid. Dan, may God bless you as you deal with stage 4 cancer. I cannot imagine what you are going through, but I will pray for you.

#2 – Dr Lawhern: Thanks for mentioning the “Rally against Pain”. Since I first read your post about it, I’ve thoroughly researched it and have decided to try to attend. I asked in my earlier comment what else I could do, and attending a rally in Washington, DC is something I can try to do. I am never able to “make plans” because of my health issues. But I’ve discussed it with my wife and, if I am able to try, she’s willing to drive me to the rally. I sincerely hope that there are many others who will TRY to go. This is a way to get the kind of attention that we so desperately need, as a significant portion of the American population. Our voices need to be heard, and I am so grateful for the people who have taken the time and put forth the effort to organize this event. The LEAST we can do is TRY to join these people. It’ll be a 5-6 hour drive for us, but it’ll be worth it!

Teresa C

@dustylady Point of fact, if you are transgendered the government DOES tell you where and /or when you can go to the bathroom………………..

Dave

@ Tim- The collective tragedies of the past and the rubble of the present politics of pain care dont weigh on me like a nightmare and dont drown my innocence and hopes for a better future. On the contrary, they motivate me to move toard a better future.

Mike

Well Tim, I guess I’m even more screwed by the new government regulations.

Tracy

Your right, there is no direct email address.

Tim Mason

USA Today’s Samantha Nelson wrote a misleading story for the world to read during their breakfast meal. “The Opioid Abuser Next Door”. She said in her story that statistic show that there are 2.1 million people abusing prescription opioid in this country.
I know money is being poured into lobbyists to group chronic pain patients into the “addict class”. The only reason for the addiction profiteers to fund such inaccurate statements is to get addiction treatments paid for by insurance so that they may reap the benefits an insurance plan. Their 100 dollar a week charge to young addicts and pill thieves would go up by a factor of 10 of if they could link every opioid user in the same set. Statistics does not work like that.
There is no accuracy in media.

Tim Mason

@Dave- I was at a seminar in St. Louis a few years ago. In the lobby I noticed a sign “History of Anesthesiology” 5th Floor. A friend and I thought we would check it out. He is a member of NOCERC. We saw all the early mixtures of exotic gases, archaic ether systems and a drowning victim resuscitation device as used in “The Three Stooges”.
My friend as the lady hold the exhibit and explaining all the archaic equipment what they used for circumcision. Her mouth flew open and she turned her back to us. My friend is a large contributor to NOCERC and he pressed for an answer, know that there was not one. Not historically and not even now. We were asked to leave.

Cynthia

How about giving us an email address, and a mailing address, of one or a few key government officials, and we all send letters and/or emails to them ON THE SAME DAY. And we could al, CALL them ON THE SAME DAY…Just as a start. ….also, I am not able to get to Washington DC for that rally, but I could show up at local offices of my elected officials. And we have to KEEP doing this, maybe every month or biweekly.

Tim Mason

Lana, these career politicians and those holding honorary degrees cannot obtain a real job at their age with weak credential that pay them the high salaries and perks they get.
Honorary Science Degree-Laughable.

Tim Mason

Methadone treatment around here (North West Georgia) costs $95/week. That is $380 dollars + the occasional urine titration to see that the “patient” is not overtaking his/medication. That is a $400 month pain management. The insurance does not pay for this. This is why Addiction Centers and Addiction Doctors want chronic pain patients to be called ADDICTS. This would generated a Windfall for Addiction centers if Insurance started covering methadone treatment. The $400/month would go to $4000/month.

Misti:

I agree that the government wants people on total disability to disappear. I normally would not vote Republican or Trump but the Democrats have a plan to continue this plan to pressure Drs and patients about opioid use. There are people trying to file a class action lawsuit. Petitions have been tried and failed in most cases. I might be interested in working with someone who backs the rights of the disabled to see if we could get theWorld Health Organization to talk to us or the media.
My email is lg51786@gmail.com
Lori

Misti

the gov wants people on total disability to disappear
We need to vote Trump to get rid of the Obama agenda
the only way to get these people to listen to pain patients is to cost them money
why can’t we contact the World Health Organization petition them to back us ?

Dave

@ Tim @ Lana- Moral disengagement is rampant in medicine , government and research- the iron triangle who uses the iron law of oligarchy to minimize or dismiss the relevance of morality in pain care- or those that claim there should be morality in pain care. They use whats known as neutralization theory in victim psychology to justify their position. First- since avoiding addiction is infinately more important then helping people in pain we must only focus on that. They refuse to take responsibility for any externalities- any harm to people in pain for their policies- they deny that there is or could be any harm-and finally they deny there are any victims of their ill conceived policies. After all people in pain are just hysterical malingering catastrophizing drug seekers-and government cant support the needs of such immoral beings. So it is clear the iron triangle consists of demoralized and demoralizing subhumans. They are such stuff as Milgram and zimbardo experiments are made of- they tacitly use the Nuremberg defense. And so pain care has denigrated into a cruel theater of absurd for people in pain for they are treated like people in Kafkas The Trial or by doctors who are like characters in Ionescos Rhinecerous. Again its a cruel theater that has no place in civil society. Let us not allow the irn triangle to diffuse or deny responsibility for creating the cruel careless clueless pain care system that even infants are frced to endure. Let us confront the irreesponsible dehumanizing unjustifiable ways of DHHS and politicians and all the powers that be that support the gorotesque monstorsity of pain care in the U.S. And if not now -when. We know that the DHHS is dead to moral concerns in pain care- they are programmed and inauthentic individuals that dont believe in democratic deliberation as they believe in right wing authoritarianism and fascisim to coerce people in pain to serve their power privelge and designs. They have made a desert of pain care and starved our hopes for a much different and much better and more humane pain care system They have escalated their commitment to a coercive Brave New World of pain care where choices are minimized and the right to chose is seen as an obstacle to their designs. They are a faction that is convulsing the god of pain care -they are the people our Framers- Jefferson, Madison warned us about When they told us that confidence is everywhere the parent of despotism. They will not let reasoned argument to change their position. For reason is something that they use only to promote their power and privelege and dominium over people in pain. We have a chance to vote out incumbents and let the new legislators and governors and president know we seek to restore humanity and civility in pain care and our dried voices will no longer remain mute and meaningless and as distant as fading stars to the inured and immoral monsters in government… Read more »

We are in life-threatening crises. People with great courage are fighting this fight isolated and alone. We are dying. Some of us slowly, some of us quickly, some of us accidentally, some of us with intent, but make no mistake, WE ARE DYING!

CAN YOU HEAR US NOW, NOVOTNY?

Laura Robertson
chronicpain@bell.net

Kathleen Hirte

I’m on of the victims. I’m told I have pain equal to stage 4 cancer. Too bad I don’t have cancer. Because then I could have meds. It’s not a game it’s not a party it’s not a hobby It’s My Life. I have a spotless record of 20 years of an old dog down dulled- down life of 100% total+ permanent disability.
If I could help in any way even just giving a statement or putting a face on this I will. I’ve had a very complex surgery at Northwestern Memorial Hospital buy the top cardiovascular surgeon in Chicago based on his peers vote at that time. The surgery was botched there’s nothing else they can do if it affects my skull my neck my shoulder and my right arm I have a compressed artery would cause constant nerve death and constant painful failed nerve regeneration. In a nutshell that’s where I am also without any help and alone I’m 64 years old and I’m miserable.
I previously had a rather successful job at Norfolk Southern Corporation in operations and marketing yes I had a good life it’s gone. Thank you for what you have done by speaking to this moronic government official

Jean Price

Glad you’ve shared your conversation with us all, Lana! I’d like to see this in print with a syndicated newspaper!! It is sadly reflective of the non compassionate attitude so many in government have and even the shrugged shoulders of some doctors who no longer treat people with long term pain because it is a hassle…and a bit of a risk! If they…meaning HHS and our doctors….had stood up firmly and vocally against this in the first place, I wonder where we would be now? Probably a lot more comfortable AND more functional! We have a ways to go to get more people in the public informed but the rally will be an eye opener to many, as will this article. Hope those coming to the rally at the Ellipse in Washington, D.C. on October 22 see it draw a lot of attention and interest….and support! Thanks for all you do!

Dan

Yes, of course the government is aware, as they are the ones who created this mess. I owned a very prestigious Marine Construction company for many, many years. The majority of my customers are “higher ups” (politicians and musicians) as living on the water in NJ is quite expensive. Many of whom, I became quite friendly with. I was invited to join in a yacht ride a few months ago with a very influential (government affiliated) friend that I had previously done work for on numerous occasions. Thinking this would be a great opportunity to spend some quality time with a good friend and also seize the moment to discuss the forbidden opoid war, I obliged. Much to my amazement he was very aware of the situation, though he felt very badly, he had no answers or advice to offer. He did suggest that medical marijuana will soon take the place of opoids and be the new “cure all” of course at the pain sufferers cost. You cannot even access palliative care here in NJ without a dx of less than 6 months, so basically it’s now hospice. It appears every avenue has been covered by our government to prevent the legitimate sufferings access to essential medically necessary pain medication. It is against the law for a Surgeon General to enforce sanctions, so instead he created “guidelines ” that physicians and patients know are in fact “law” though we cannot prove it . The “guidelines” further state “non – cancer” pain. Yet another lie imposed by our government, as I myself have stage 4 cancer and along with many of my warriors, have not been exempt in this Tidal Wave of a failed opoid war. We now have patients postponing elective surgeries out of fear of pain. These surgeries that may cost $10,000 now will cost $50,000 by the time that they become mandatory surgeries. I recently engaged in a conversation with a very compassionate RN from the UK, even she is aware of what’s going on in the USA. The nurse stated “she fears this happening in the UK as they seem to follow the US in Healthcare”. PMPs have been implemented. Pill mills and over prescribing physicians have been shut down. Very subjective pain management contracts are in place, along with pill counts and urines yet heroin and other illicit drugs continue to rise. We are all aware prescriptions are plummeting yet heroin is surging. The millions of legimate pain suffering patients are further having the blame placed upon our weary shoulders for any and everything. ” Little Johnny ” was prescribed a bottle of percocet which further lead to heroin use. Who is to say that this is true? My son broke his arm years ago and was prescribed a bottle of percocet yet never used heroin or any illicit drugs. As Regans well celebrated war on drugs may have been Regan and that generations greatest failure, so will be this huge failed war on opoids. Furthermore… Read more »

Cheri G. Furr

Has Mr. Novotny ever managers pain clinic so he knows exactly what sorts of individual severe cronic pain is suffered out in the real world? Has he even heard of Chronic Regional Pain Syndrome (CRPS), which is ranked number ONE on the McGill Pain Scale, with cancer being ranked number TWO? Yes, cancer is more common, but there at least 15 million Americans suffer from CRPS! CRPS had no cure. Many of these patients have gone to SEVERAL Pain Management clinics and types of doctors before being diagnosed with such an in intensely painful disease. Intense chronic pain knows no socioeconomic or racial divides. It causes its sufferers to be required to take opiod medication or almost die
from their pain. In fact, many DO, by suicide. Mr. Novotny ignores this segment of chronic pain suffers completely. There IS NO other treatment on the market right now. When and if a new non-narcotic painkiller is approved by the FDA, this might be a elderful new product to try. But it will take years of clinical trials, an NDA, then more years getting through the FDA, ramping up production, getting marketing ready, sales staff trained, distribution to drug chains from their headquarters, training of the doctor’s, and in 8 years or so, you MIGHT actually get a prescription for it! But chronic pain sufferers who are at their end’s limit cannot wait eight years!!! #chronicpainnotaddicts!!!

david

Never doubt that a small group of thoughtful committed citizens can change the world- indeed it is the only thing that ever has- margaret mead
Its up to people in pain to change pain care. Just as it was up to women to improve womens rights or working people to improve labor laws or Blacks to improve civil rights. John Wayne isnt coming with the cavalry t save the day for people in pain, Obama wont get religion when it comes to pain care or when it comes to caring for people in pain, doctors wont see the light and repent of their past clueless, carless, callous, orientation to people in pain. And time wont heal all wounds.
I dont know who or what people in pain are waiting for- are they waiting for Godot? With their futures at risk, what are they hoping for? If not know when as the philosopher wrote. The time is now to take decisive and energetic action to transfrom pain care- for themselves, for their friends and family-and fr the future.
Whose to say that government and professionals wont continue to burden people in pain and take away more treatments? They have mved remarkably fast, remarkably callously remarkably undemocratically to add to the misery of pain without just cause. I say their cruel inhumane march against people in pain is not over. The continuing escalation of failure will continue- unless and until people in pain put up a united front against the cruel march of government and their henchmen in medicine against people in pain.
I havent forgotten the memory of freedom and the history of governments that have opposed it. It is tragic that so many people in pain have accepted the abuses of government with quiet desperation. It doesnt have to be that way. And i hope soon a group of dedicated individuals will arise and stand up for human pain care and transform the hellish system government and professionals have created for people in pain.

jimmy

At what point is this country,must less the president, although im sure he’s itching to get out of office. Finally going to talk about the war on dtugs?????it affects about every sinhle area of life,but people just wont do it. But on other hand at least there should be 5 more states with pot being legalizing it. Thank god for some more common sense got ing on.

Lori

What is Really Behind the “War on Drugs” : Opinion

The attached article is an interesting narrative on the history of the so-called War on Drugs.
If we put two and two together we might come up with the real reason behind it. The War on Drugs goes back a long way and there is really nothing new about it. It’s goal has always been political, and to target a particular group or race as a threat to society. After the 2007-2008 “Recession” many more people from all races and socio-economic backgrounds were suddenly without jobs. Subsequently what followed was an increase in applications for unemployment and federal disability funds. Then OBAMA Care hit adding millions to the roles needing healthcare. Many people may have been taking prescribed opioids to allow a reasonable quality of life and employment productivity. These two things added to the millions already receiving federal funds, was going to “break the bank”. Anyone and everyone seen as a “drain” on society had to go. I believe this is why we have seen no regard for human suffering on such a broad scale. Always follow the money.

http://www.attn.com/stories/1503/war-on-drugs-real-reason

Dustylady

I am so sick of our Government butting in where they don’t belong. Pain meds, abortion, who you can marry, marijuana (a naturally grown herb). These are all issues that should ONLY be a personal choice, or between you and your Doctor. Period. In our country it feels like “Big Brother” is watching. And I’m afraid it will only get worse. Pretty soon we won’t be able to use the bathroom without the Government saying we can.

Mike

I am a patient with Kaiser Permanente. When I first went to Kaiser I was prescribed vicodin for pain. It wasn’t working very well and I was switched to methadone. It worked well enough that I was able to continue working and function almost normally. Now Kaiser has dropped my dose about 50% to get me below the government’s recommended.morphine equivalent. I can see the writing on the wall that Kaiser will move to stop opiates completely. I am starting now to prepare for retirement on SS disability. I think my only option at that point will be to lie and claim I am an addict and unable to stop, at which point Kaiser will send me to a methadone clinic instead of expensive drug rehab. I will be able to continue pain management. The drawback will be I will have to associate with drug abusers and give up my ability to travel. What a great turn of events considering Kaiser recommended methadone in the first place.

Maureen

After reading this (although basically nothing new, just added to the ongoing reports, regardless it’s appreciated to know) I find my heart beating really fast, my stomach churning, my muscles tightening, have tears in my eyes and my pain level is rising. Anxiety!! And so all I want to do now is end my day and crawl under the covers.
I’m scared.
I had a very bad pain day yesterday, aside from my spinal pain/issues I’m in a wicked FM episode. I’m so inflamed and burning right now.
Last night while lying in bed not wanting to move an inch due to the pain…I thought to myself “imagine what it would be like without your meds”.
I’ve gone without meds/withdrawal 2x due to the poor pain management I experienced when I moved to Fla. 2 yrs ago…it was horrific and I really can’t ever go back there. The FEAR of it makes me quiver and depressed. Such an atrocity.
Dear God, please please hear our prayers and help our community.

Dave

Never doubt that a small group of dedicated advocates can change the world. In fact its the only thing that ever has.
So says a famous anthropologist.
People in pain can and should unite and change the cruel careless clueless misanthropic pain care system we have today. Waiting and hoping that obama or congress or some doctors or civil rights group or john wayne and the cavalry will change it is nothing more then fecundating the useless.
We have the great advantage of numbers and of learning from occupy black lives matter animal rights movement womens movement the labor movement to name a few . We should call for the resignation
Of all key staff at dhhs and doj for they are part of the problem. We should askbfor represntation on medical boardsband advisory committees. We should vote against incumbents. We need to impose substantial costs on the powers that be on government and health care.We need to be determined.Failing that dont expect pain care to improve anytime soon

connie

Sadly this attitude isn’t reserved for the government, I find it in friends, family and acquaintances. If it doesn’t directly and personally affect them people just don’t care. Heck I have even seen this attitude amongst other chronic pain sufferers claiming that if they can do without medication then everyone can!

Martha Arntson

Great read! And true! I am one of the victims of the fallout of the CDC guidelines. I was denied anymore prescriptions for Percocet 3 x a day back in March, 2016. I took my own withdrawal which I anticipated but didn’t happen), because I was not addicted after 4 years of being prescribed the drug.
Now I was dismissed from pain management on 8/31/16 due to some “made up reason” in a letter that was a xerox copy with a check mark next to the “I saw or obtained other narcotics from another physician”? I did not. I got my Records for the past 6 years from the States Prescription Drug Monitoring Program (PDMP). There was nothing in it that showed anything of the sort. I now am considering a lawsuit (possibly a class action if I can get others to join in) against the Pain Management facility that discharged me under false circumstances. I need help, medically, and with that red flag in my files with them, how am I to find another doctor that will treat me? I feel so strongly about how they were able to just send me a letter, with “false information” about me that I will pursue this until the day I die.

Tim Mason

http://www.fda.gov/downloads/drugs/guidancecomplianceregulatoryinformation/guidances/ucm401079.pdf
The link above describes how internet, social media and blogs are monitored. It appears in fact that the FDA is “looking in the window” so to speak.
I suspect that much of what is shared on social media or stated in forums concerning how third parties feel, including the public is well known to a certain group of FDA employees.
I just found this curious and see it as a potential form of government censorship.
I share some of the blogs and drug topics with social media. (FB).
I suspect that the chronic pain patient is being viewed as much an inconvenience as the Native Americans were.
I would say that as a pain society, the Government has no qualms about putting us all on a modern version of “The Trail of Tears”.
Just my Sunday morning 2 cents.

Rally Against Pain is on October 22nd.

For all of those who asked “what can we do”, I have several suggestions.

— COME TO WASHINGTON FOR THE RALLY AGAINST PAIN, 10AM to 5 PM on the Ellipse (Presidents’ Park), just south of the White House. If you are unable to travel due to illness or finances, then ask a friend or family member to go in your place. Bring snacks and water, or a portable lawn chair if you can pack one. RSVP to https://rallyagainstpain.com/blog .

— Write me at lawhern@hotmail.com or Lana at lkirby7656@aol.com to obtain a copy of our press release. Print it out and mail it to the city editor at your nearest large city newspaper.

Help to make our issues as chronic pain patients visible!

These facts aren’t exaggerated. Mr. Novotny even started to laugh a few times as to what is happening in the chronic pain arena. This article was written before I was contacted by an 80 year old NY man whose pain clinic had been shut down. And the musician from Oregon who was living a life of agony and had no where else to turn but to the internet, where he found the Rally Against Pain. The situation keeps getting worse and worse. How can the government allow people’s pain medication – their only lifeline to a semblance of a normal life, to be taken away. Are we against overprescribing – Absolutely. Are we against starting opioid treatment of other treatment is available? Absolutely. Are there a large number of people who have no other options than opioid treatment, used in combination with other modalities, in order to sustain functioning? Absolutely. Are these people declining at a rapid rate of speed? Absolutely. So why won’t anyone in Congress or any elected official speak seriously about what we need to do to help the situation? I’m clueless.

Tracy

Why can’t we take it to the Supreme Court after Trump is elected.

Tim Mason

He was awarded an honorary Doctor of Science degree from the University of Nebraska in 2015.
key word (HONORARY)

Tim Mason

” Yet Novotny seemed totally disinterested in changing this sad state of affairs”.
“Given the attitudes expressed by Mr. Novotny, we cannot be terribly surprised at their disinterest.”
These two statements quantify what I have been observing and saying about the United States in general. This is an attitude of complacency. A “Not my job” or “Not my problem” response made to “NOT ROCK THE BOAT” to maintain their jobs, salary and benefits fro said job.
My statement to these individuals is this”
“Where you are, pain free, I once was, Where I am now suffering in severe pain, you will one day be”
Now, let me check their credentials and history.