Are Elected Officials Listening to Chronic Pain Patients?

Are Elected Officials Listening to Chronic Pain Patients?

When you write your elected officials and public representatives, you expect an answer.

But as of yet, our March 20, 2015, letter to Montana U.S. Senators Tester and Daines, U.S. Representative Zinke, Governor Bullock – and the Montana Board of Medical Examiners has gone unanswered.

FDA Rhonda Walt Terri

Co-Author Terri Anderson (far right) with two other adhesive arachnoiditis sufferers at the FDA last year.

And that’s a shame because Montana is facing a serious public health crisis—chronic pain patients are being underserved. There is a war on chronic pain patients. There is war on physicians who prescribe.  Ask Dr. Mark Ibsen of Helena. He’s become a surrogate target on the war on opioids which is actually the war on chronic pain patients.

Montana is a great place to live, work and play for those who are healthy. However, Montana has a chronic pain problem.  Experienced patient advocates also know that Montana has a harmed patient problem, especially when it comes to failed backs.  Back pain is a leading cause of disability, despite billions of U.S. dollars poured into interventional pain procedures.

How back pain is overtreated is what we want to talk about.

The numbers of epidural steroid injections (ESIs) continue to increase, and now approximately 9 million are administered annually in the U.S.

We suffer adhesive arachnoiditis caused by misplaced steroids in our spines.  Gary was a successful businessman who worked in the construction trades, and Terri was a civil engineer with experience in both the federal and private sector.  Now, we both advocate for arachnoiditis survivors. We carry forward our message on prevention through a grassroots movement, Arachnoiditis Society for Awareness and Prevention.

We made the difficult trip back to FDA headquarters in Maryland to testify on the dangers of corticosteroids used to treat back pain.  Other arachnoiditis survivors (including Walt Davis and Rhonda Posey) attended the Nov. 24, 2014 open public hearing.  Family members also testified on behalf of their loved one who they lost to arachnoiditis hell and suicide.  At the hearing, we learned that Montanans undergo relatively high numbers of spinal surgeries and ESIs for back pain.

An estimated 100 million Americans suffer from chronic pain conditions.  The problem is growing despite the billions of dollars spent on intervention. We strongly believe that patient harm is a significant factor contributing to this pandemic, and driving up the demand for opioid consumption in the U.S.

In July 2014, there was a U.S. Senate hearing chaired by Senator Bernie Sanders (Vermont) on preventable medical harm, now the 3rd leading cause of death.  Approximately 1000 deaths per day plus 10,000 injuries per day are caused by preventable medical error.  During the Senate hearing, Sanders asked:  “Why isn’t the Press all over this?”

We ask:  “Why isn’t Congress all over this?”  The model to treat chronic pain is failing the consumer.  Honored Veterans are joining our ranks as they also suffer various chronic pain conditions.

The draft release of the National Pain Strategy by the NIH maybe can help spur a great discussion on pain.

We hope so.

To date, we have not received a response to our letter in support of Ibsen and his pain patients.

Pain patients will carry great collective power if we unite and stand behind a worthy cause.  We found a worthy cause in Dr. Ibsen as we intersected at the cross roads of patient harm and the war on chronic pain patients.  This momentum is destined to take us in a new direction.

We have put our elected officials and state regulators on notice.

And we await their answer.

 

There are 16 comments for this article
  1. S Wesley at 7:33 am

    For Thomas Bresnahan, if you happen to venture back to this page…

    The Florida panhandle is truly an awful place for anyone in chronic pain.
    From Drs unwilling to prescribe to pharmacists unwilling to fill, it has turned into a place where even mentioning pain meds earns you a dirty look or an accusation.
    When I lived there, I ended up having to drive to Alabama. So you might start looking at whatever AL town that’s closest to you. You’ll have to fill in an AL pharmacy most likely too. But the drive is preferable to the pain, imo

    I really hope that you can find a doctor before your Meds are gone…best of luck to you.

  2. Dave at 2:23 pm

    @ Danny Long- government and experts in health care arent motivated to make things much different or better for people in pain.
    Was it so long ago when both the decade of pain and decade of the brain both failed? Government and experts are stuck on themselves and stuck in a reinforcement loop- they go round and round and round- without real progress, In the NPS there is no vision to lower any painful condition, or lower pain scores or retrn people in pain to work- in other words the governemtn and healthcare industry have no vision. What they have is a thinly veiled plan to develop the lifetime pain patient, a plan to remain unaccountable to people in pain, a plan to keep their buddies in power- and ignore the voices of people in pain.
    It is up to people in pain to take back their pain care- to demand a pain care bill of rights- to complain to elected officials and medical boards constantly until they are heard- failing that dont expect pain care to improve anytime soon.

  3. Danny Long at 5:45 pm

    Elected officials
    I attended the July 2014 Senate hearings concerning the 1,000 deaths a day from medical errors. I have been actively engaged with medical harm victims for the last half decade, I know their story of suffering all too well. Even Basic (Joint Commission Mandated) safe surgery protocols are often ignored, causing untold human harm.

    Not only are hundreds of thousands of patients dying from preventable harm every year, many more are left crippled for life. Many now suffering with debilitating spine injuries.

    The new opioid controls is yet another inhumane torture placed on top of the fact, The vast majority of these serious medical harm survivors will be bankrupted and left in unimaginable pain.

    Surly we can do better than this. Cant we?

  4. Stephen S. Rodrigues, MD at 12:54 pm

    All “pain” has a pathologically significant cause that should be uncovered to be effectively addressed, treated or cured.
    All “pain” that can NOT be readily found in the blood, on a scan, in an X-ray or other equipment used in modern technology by deduction must be in the muscles and connective tissues.
    All “pain” that is thought to be in the muscles and connective tissues or myofascial tissues must be effectively treated until proven otherwise.
    All “pain” that is not effectively treated at the primary source should be considered poor medicine, unethical, disrespectful and betrays the human spirit.
    All “pain” types must have a cause, that cause must be effectively treated until the patient is satisfied or the pain is resolved.

    Modified from Dr. James Cyriax, an Internist and Orthopaedic Surgeon in England.
    He coined the term ‘Orthopaedic Medicine”. The basic principles of Orthopaedic Medicine are: 1) Every pain has a source. 2) Treatment must reach the source. 3) Treatment must benefit the source in order to relieve the pain. Most sources of pain in the musculoskeletal system can be localized to a specific tissue. We look carefully in a systematic manner to isolate the cause of pain, and then treat it specifically. A specific diagnosis leads to successful treatment.
    http://www.aaomed.org/Cyriax-System-of-Orthopaedic-Medicine

  5. BL at 10:59 am

    Bill Runge, you idea is a good one. But, it takes money and time. Most chronic pain patients who aren’t receiving proper pain management aren’t physically able to go and do these things and keep up the pace, so to speak. But, if those patients could email or write the politicians with proof of receipt and then if they hear nothing or receive a standard reply, as a group contact the local new media, there might be a story in it. But, it will have to be a group of people doing both, not just one or two.

  6. Terri Anderson at 7:09 am

    Dr. Ibsen,
    You have brought forward a significant problem that arachnoiditis patients face, as there are only a couple of physicians in the U.S. who are brave enough to consistently diagnose adhesive arachnoiditis. They have their own battle scars. We are grateful that you day-lighted the problem in this forum. This is a good resource to guide radiologists (who are willing) to make the diagnosis:

    http://radsource.us/arachnoiditis/

    You have so much support from many chronic/intractable pain patients throughout Montana – and now the U.S. Thanks for giving many chronic pain survivors a light of hope in all this darkness. Thanks for your courage.

  7. Bill Runge at 9:17 pm

    Actually, I think we are at the turning point; the point where we put the elected officials and the medical board on notice! Since the politicians and medical are not responding to our letters, etc., we should take each and every letter, study, survey, petition, with a group of 10-20 people with a videographer and deliver to staff members of said officials, while being filmed the letters and information we want them to review—they can no longer claim ignorance, nor lack of notification on this subject.

    It is possible/likely that a local network affiliate will want (or be invited to) some of this video footage; from there it will form a national recognition and force of it’s own.

    Once we get the attention and and interest piqued, we start hitting the media and public with the FACTS! Expose the “interventionalists” as opposed to the genuine healers; those who treat acute , short-term pain differently form those with chronic, intractable pain. Demonstrate reponsible, planned and responsible opioide use by those pts who prove that they can use opioides in a safe and responsible manner, take away the stigma of opioides. Same usage and utilization with alternatives such as cannibus, herbal remedies, homeopathic, accupuncture, etc.

    Educate the elected officials and the public as well about the difference between intractable, chronic pain vs. acute /imited duration pain and their respective treatments.

  8. Thomas Bresnahan at 3:45 pm

    I was given an epidural injection in 2009, the doctor punctured through my spinal cord. I was diagnosed with Adhesive Arachnoiditis on Dec 31st 2009. I have lived with hellish pain ever since the injection. I lost my job, I worked in a very busy Interventional Cardiac Cath Dept at my local hospital. A job that allowed me to help save lives! I’m now permanently disabled! At the age of 49 I had my life taken! Why? Because of the greed of doctors who are injecting people, putting them at risk for what amounts to a Band Aid IF it works! The Risks far outweigh any benefit! But the financial gain for the dr is anywhere from $1500-$2500 per injection! Dr’s will say they get only $50, that’s a lie! They bill for their surgical suite, the procedure tray, the nurse and everything else they can lump into that one dangerous injection! And now those with chronic pain face another fight. The fight to get our pain medications! The same Dr’s that have harmed us want pain patients to submit to more injections before they are given pain medications. In states like Florida where I live the DEA has gone after so many doctors for writing prescriptions for pain meds that many have just stopped. Who suffers? Those who have already been harmed by the Health System and the Governments inability to look out for the individual. It’s all about those with power and money! The rest just suffer! I’m 8 days away from running out of my medication. I recently moved from the east side of the state to the panhandle. Because I’m on pain medication no dr will take me as a patient. I have one that’s waiting to review my records, if he decides not to take me what am I suppose to do? The pain is horrible with the medications! It’s unbearable without! It’s no wonder so many have opted for suicide as the only real option.

  9. Michelle S. at 9:05 pm

    Have you guys ever tried to warn someone who is about to get a steroid injection in their back? They don’t want to listen either and we are trying to save them from the horrors of this disease. I really don’t expect politicians to listen either unless they know someone who actually suffers with arachnoiditis. I am 39 and have had this for 19 years now. It took me about 6 years to be diagnosed.it would be so great though for them to actually talk to those of us who suffer from chronic pain and not throw us in with the drug heads that are there for meds. Its degrading to those of us who really need them to just be able to make it through the day.

  10. Mark Ibsen at 6:41 pm

    I saw patient yesterday at our new pain clinic, under the Banyan tree. She has had seven epidural steroid injection’s over several year period of time. She is very cold hands and feet typical of a central pain syndrome as described by Dr. Forest Tennant.
    We have been vigorously attempting to wean the patient off a very high dose opiates and she has categorically failed the weaning process. I realized yesterday she likely has adhesive arachnoiditis. She was weeping and suicidal in front of me with the severity of her pain and the burning that goes down into her bones of her hips.
    Out of the 100 patients I’m now following for pain I believe at least seven may have adhesive arachnoiditis. I don’t know how I’m going to gather solid proof in order to support the patients.

  11. Sheila at 5:38 pm

    As an arachnoiditis Survivor, I have great empathy for anyone dealing with chronic pain of this nature. It is truly a shame that those who actually can get some relief from SOMETHING are being denied that option. Although I am proud to be an American, it’s no secret our political system is “broken”…apathy from voters, greed, obliviousness, and lack of information are but a few reasons for that. I am aware these complex issues cannot be fixed over night.
    While everyone is trying to make the decision which best suits his/her given political/personal agenda, people in pain, especially those in pain due to medical harm, continue to suffer. This is why I created the Art For Arachnoiditis Project in March 2014. Now Fiscally sponsored by the New York Foundation for the Arts; the project is designed to Empower Spinal Arachnoiditis Survivors via participation in the arts, provide applicable coping tools, and a sense of community for Survivors who have no where else to go because the source of their pain is also the only known source for a solution. For most of us, those solutions are NOT being offered. Our FIRST public exhibit featuring art by and about spinal arachnoiditis survivors will open April 18, 2015 from 1-4pm at the Fountain Arts Center in Belmont, NY. The project goals have slowly expanded since we began in 2014.To find out more, start at the AIM|Hatchfund campaign launch (ended June 2014) that was our beginning, here: http://sheilalynnkart.com/artwork/3478309_Arachnoiditis_Survivor_Launch_Video_4_2.html
    Then just follow the associated links or visit artforarchnoiditis.org to see Survivors’ Stories, Art By Survivors, Healing Art Activities and other project events and updates. ~Wishing you all a low pain day.

  12. BL at 4:55 pm

    John Sandherr, most of the vets who are receiving pain management have had to go to drs in the private sector. Unfortunately, unless they receive SSDI and Medicare, most can’t afford the private sector. Have your sons applied for SSDI ?

  13. david at 1:35 pm

    Pain reflects the moral disengangement of our leaders and our health care “experts’. Lergislators cant be bothered taking the time and making much of an effort to “feel peoples pain” nor be rational about a plan that would meet the needs of people in pain and lower the prevalence of pain and its economic and human costs. Poltiticians are modernists-and allow experts great freedom in being morally and mentally lazy toward people in pain. And so the experts take advantage of the freedom vested in them and have created atrocious pain care.
    Modern society cant bear the reality of pain- it is a stain on their belief that the modern way of doing things is infallible-and so our irresponsible politicians and irresponsible pain experts are forever stuck on their failed modernistic solution to pain.
    It is up to people in pain to trouble the sleep of politicians and infallible modern pain experts. Unless they realize modernism doesnt work and cant work then real progress in pain care wont happen- unless people in pain take pain care into their own hands and learn the lesson that politicians and pain experts seem incapable of ever learning.

  14. John Sandherr at 1:30 pm

    Nice article ! Do not hold your breadth waiting for
    an answer from your elected idiots .

    If they answer it could be an acknowledgement of
    a real problem. A non reply is their way of saying
    ” sorry, can’t and won’t help you ”

    My two oldest sons are USMC Vets and both left with an
    80% disability rating – the oldest has a bad back caused by training
    and the other son has combat related injuries. Both have now been
    denied pain meds that work but there seems to be plenty
    of antidepressant meds to force on both of them. Neither is
    depressed – pissed off but not depressed. The VA is slowly
    killing our heroes and they can only lie about it.

    Thanks,

    John S

  15. BL at 12:55 pm

    If you receive a response, it won’t say what you hope it will. Now if the chronic pain patients made the national evening news, at least you would know someone was listening. Of course getting something done is a different matter. The phrase “the squeaking wheel gets the oil” applies here.