It’s a Fentanyl Crisis, Stupid! – Kaatje Gotcha Crippled Comedy – Medium – by Kaatje Gotcha | Crippled Comedy – Dec 2018
This excellent article from an author crippled by spinal pain tells the story of the current “pain crisis”.
She explains how the CDC guidelines were written in secrecy with input mainly from anti-opioid activists and how these guidelines have had horrible effects on pain care in this country. She backs up her statements with numerous current references, as everyone should (and the anti-opioid zealots never do).
In 2012, life was great: I proudly wore a white coat with a stethoscope around my neck and finally felt useful to humanity.
Because the author was/is a medical professional, she knows what she’s talking about.
Two decades earlier, as a stuntwoman, my parachute did not quite open, and I landed on my sacrum (tailbone) at 70 mph,crushing the sacral nerves.
I would spend a year in ICU, hospitals, and a spinal cord clinic. I was left with traumatic cauda equina syndrome, suffered from residual pain, and was left with a “sitting disability.” For my atrophied lower leg and foot muscles, I used leg braces and a cane or scooter and sat on a padded office chair. I’ve schlepped pillows around ever since my skydiving accident.
As a Physician Assistant in primary care, I had ample opportunity to prescribe opioid medications. Responsibly, of course. In my toolbox, I had excellent interview skills, the Prescription Monitoring Program (PMP), and a urine test.
One patient’s husband worked for the Drug Enforcement Agency (DEA), and he told me one that opioids went for about 70 cents per milligram on the street. However, I never assumed someone was gaming the system and tried to keep an open mind.
Another patient had just moved from Arizona, with a history of using 30 mg of MS-Contin, a long-acting morphine tablet, three times a day, plus another opioid, Percocet 10 mg instant relief (IR), one tablet every four to six hours for breakthrough pain.
The patient was full-time employed, doing fairly intense labor, and was incensed when I wanted evidence of his “bad back.”
The patient did not bring any records during his first visit, but he later returned with a lengthy health record — his pain deriving from five back surgeries, three of them revisions for the original surgeries.
I had never heard of “ultra-rapid” or “slow” opioid metabolizers² which affect adequate treatment, and still believed the Center for Disease Control (CDC) had society’s best interest at heart. The opioid crisis seemed far away, and I believed that did not affect my patients, or myself.
But complicating matters was that opioid medications did seem to be prescribed for relatively mild to moderate pain, or in situations where acute pain would soon resolve
Although I was in tremendous pain myself from the sky diving accident and crushed sacral nerves, I denied suffering from intractable pain.
Yet I was battling worsening neuropathic (nerve), as well as residual musculoskeletal pain from the sacral and vertebral fractures, on a daily basis. I made it through each workday by lying down on the exam table during lunch. Work gave me great happiness, but physically I had no energy left to cook, maintain friendships or even have a hobby.
Sure enough, over the years, after the CDC Opioid Guidelines came out (which are voluntary, and not legally binding), I began to realize that there is no true opioid epidemic.
There’s an epidemic alright, of people taking opioids with multiple medications and then adding alcohol and other illegal drugs on top.
What we most certainly have is an alcohol epidemic, with 88,000 deaths annually, and this epidemic is starting to effect millennials. I blame those hipster beers with ridiculously high alcohol percentages, as millennials are dying of liver cirrhosis in record-breaking number
Despite the alcohol epidemic, from 2012 to 2016, using opioid medication became synonymous with being a “drug seeker.” The “opioid crisis” narrative was perpetuated and fueled by mainstream media, whose culpability lies in using labels like “opioid overdose deaths” instead of the more appropriate “mixed drug intoxication.”
Looking at the numbers, most of the so-called “opioid deaths” seemed to be people who did not take their medication as instructed, if opioids were legally prescribed in the first place.
Seriously, because who cooks their Fentanyl patch and injects it? Not chronic pain patients, who need slowly titrated medication to bathe, cook, work, take care of kids, or go to school
Patients were indeed dying from respiratory depression, caused by taking legal or illegal opiates. But how many of those deaths are suicides?
If patients with severe pain, on a stable regimen, are denied access, then they may turn to suicide, or illegal opioids like heroin, now tainted by illegal fentanyl. That is not an opioid crisis, but another iatrogenic consequence of the “guidelines.” The Law of Unintended Consequences never fails.
How was it that the CDC took advice from the anti-opioid advocacy group Physicians for Responsible Opioid Prescribing (PROP)⁸ in constructing the Opioid Guidelines? PROP lobbied Federal officials and the FDA for years, to change opioid labels. When they were (mostly) rebutted, PROP got involved with the CDC, behind closed doors
Dr. Jane Ballantyne (current PROP President) was part of the CEG and is notorious for her anti-opioid stance.
Another CEG member is PROP executive director, and founder, Dr. Andrew Kolodny, who refers to opiate medication as “heroin” pills and proclaimed that “oxycodone and heroin have indistinguishable effects.”⁹ You cannot possibly compare a 5 mg tablet of oxycodone to IV heroin without qualifier
Dr. Kolodny does not distinguish between “plain” heroin, and heroin that is cut with fentanyl, which is 100 times stronger than morphine
About 80 percent of fatal overdoses are due to illegal fentanyl.
By muddying the issues of opioid dependence, opioid addiction, and heroin use with either false or incomplete statements, PROP also does a disservice to people who are addicted to heroin or illegal fentanyl.
Dr. Kolodny was Chief Medical Officer of The Phoenix House, an addiction center, at the time he helped draft the CDC Guidelines
PROP Board members are involved with
- grants from the CDC,
- addiction centers,
- medical device companies to develop an opioid tapering mechanism, and
- even consulted with law firms investigating lawsuits against opiate pharmaceutical companies.
PROP was originally funded by Phoenix House, one of many addiction centers that prescribes buprenorphine. PROP is currently funded by the Steve Rummler HOPE Network, another anti-opioid group that lists Dr. Ballantyne and Dr. Kolodny on the medical advisory committee
Buprenorphine was the supposed miracle drug after methadone, but its known side effects include serious diversion, addiction, and patients may need lifelong treatmen
Dr. Kolodny publicly promoted buprenorphine in various media outlets, despite evidence of buprenorphine overprescribing, pill mills, and overdoses
The CDC does not track buprenorphine deaths, despite a 2013 study that found a tenfold increase in buprenorphine-related ED visits.
As usual, they only count what they care about and deaths that don’t follow the desired narrative are ignored.
Interestingly, Dr. Kolodny promotes the idea that heroin and opioid medications are the same molecular compound. Actually, buprenorphine has a molecular profile that more closely resembles heroin than hydrocodone
Few realize that when the CDC issued the Opioid Guidelines in 2016, there was inadequate research done ahead of time to determine the true cause of the rise in opioid-related deaths.
There are no long-term studies on the effects of chronic opiate therapy.
Very few, if any, pain management experts or pharmacologists were consulted to determine potential impacts on their practice.
Neither veterans nor chronic pain patients were given a true opportunity to issue public comments to the CDC or any other Federal authority prior to the implementation of these new prescribing mandates.
The CDC ended up targeting one of the most vulnerable groups, patients with intractable pain
The CDC’s Guidelines also affect patients with cancer and patients who no longer receive cancer treatment because, unfortunately, both groups report similar pain levels
The guidelines allow the use of opioids during treatment, but they are confusing when it comes to equally severe, post-cancer treatment pain.
I fear this “opioid” crisis is far from over, and yet, trust me, this will go down as “reefer madness” in another hundred years. It is a manufactured tragedy that does real harm to patients with intractable pain.
Few people realize that the CDC hired a PR agency to help sell the American people myths on the “opioid epidemic.
The CDC had their feelings hurt when they received criticism for these unscientific guidelines, so 6 months after the guidelines came out, CDC Hires PR Firm to Boost Image.
Remember that those are our tax dollars being spent to malign us and our need for opioids.
The agency, PRR, designed graphics to “educate” primary care providers that “one in four patients on opioids will develop addiction.”
Even the National Institute of Health, another federal entity, estimates this to be 5 percent, not 25 percent.
Another research team concluded in Pain Medicine that opioid therapy for chronic pain patients (note: in absence of prior or current drug abuse) resulted in a 0.19 percent incidence of abuse.
The language used by the media as well as PROP contributes to misunderstanding; using words like addiction, tolerance, dependence, abuse or opioid use disorder as if they mean the same, directs the casual observer to bias
The CDC could have ensured that patients with severe to intractable pain (no such distinction is made) would not lose access to their medications. And yet, that is exactly what happened
Stable patients on long-term opioids were tapered against their will, as the CDC “Guidelines” state it is undesirable to titrate above or equal to 90 morphine milligram equivalent²² daily (aka MME/day). But this was meant for opioid-naive patients, not those on long-term opiate therapy
Dr. Ballantyne is correct in her remarks that it isn’t realistic to expect zero pain levels, but people with severe to intractable pain are condemned to a world of suffering.
Recall my patient with the five back surgeries? I wonder about him. He was working full time, on 180 MME a day, but in his mid-fifties, arthritis would worsen soon.
My own story did not end well; I succumbed to worsening pain and ended up with another spinal cord lesion at chest level.
My old cauda equina syndrome morphed into “severe, chronic adhesive arachnoiditis syndrome.”
This is an incurable, intractable, progressive neuroinflammatory disorder whose pain is considered on par with having terminal cancer pain. Still, I try to make the best of it, see my essay, On Being Bedbound.
The CDC and PROP came for me: after using opioids exactly as prescribed, and less than 30 MME daily, my primary care clinic was forced to stop my opioid prescription, and that of all patients
I was not accepted in any pain management clinic.
They no longer provide “medical management,” yet perform epidural steroid injections ($3000 a pop), which may have contributed or even worsened the adhesive arachnoiditis syndrome. I’m lucky to live in an urban area, and the academic hospital’s pain team took over my prescription.
This epidemic of undertreated patients will become known as one of the cruelest moves by a Federal agency on an already compromised population.
It is a conundrum of extraordinary proportions. At a time when managed care and Electronic Health Records dictate the length and quality of an office visit, there is less and less time to sit down and connect with a patient.
Not just with chronic pain patients.
In my opinion, it is loneliness, the feeling of not being connected to humanity in a meaningful way, combined with economic hardship, that leads to unhealthy lifestyle choices, as witnessed by the Rustbelt being hit hardest.
It cannot be denied that in previous decades, pain was both undertreated, and opioid medications prescribed for relatively minor, self-resolving aches and pains.
Forget all that, and focus on what is going on.
Ultimately, patients with intractable pain pay the price of ignorance by scientists, journalists, politicians, and laypeople alike.
For this humanitarian crisis, there are no perfect answers.
Sadly, amidst the opioid paranoia, alternatives aren’t mentioned for neurogenic or musculoskeletal pain. I don’t think Tai Chi and Cognitive Behavioral Therapy is going to cut it for meningeal inflammation.
I believe the tide is turning. It will take time, and in that time, patients with intractable pain will choose to end their lives.
I agree with Kaatje – more medical professionals are starting to speak out, even if their own advocacy organization, the revered AMA, only makes a feeble squeak. (see AMA Finally Speaks Out Against Opioid Restrictions)
The print and online magazine Reason has long been a voice of, well, reason.
As Red Lawhern stated in a must-listen November 2018 radio interview,²⁶ “We must address underemployment, socioeconomic despair and hopelessness which are a vector for addiction. And end the War on Pain patients.”
Love, Kaatje
Bedridden Dutch-American comic, writer and TEDx speaker. Adhesive arachnoiditis and SCI. Ketamine infusions and comedy help!
www.kaatjegotcha.com
Kaatje has collected an excellent set of references to back up what she says (unlike Kolodny and Ballentine, who speak off the cuff using statistics from a decade ago).
There are many useful articles in this list of references, so I’ve included them here.
- Cauda Equina Syndrome
https://emedicine.medscape.com/article/1148690-overview- Opioid Metabolism
https://www.medscape.com/viewarticle/771480- Controlled Substance Act
https://www.dea.gov/controlled-substances-act- Alcohol Epidemic
https://www.niaaa.nih.gov/alcohol-health/overview-alcohol-consumption/alcohol-facts-and-statistics- Opioid Epidemic Deception
https://www.acsh.org/news/2017/10/12/opioid-epidemic-6-charts-designed-deceive-you-11935- Overdose Deaths by Heroin/Fentanyl 71percent
https://www1.nyc.gov/assets/doh/downloads/pdf/epi/databrief89.pdf- Washington Legal Foundation and PROP
Legal Complaint Filed Against CDC Opioid Guidelines- Physicians for Responsible Opioid Prescribing
http://www.supportprop.org/- Dr Kolodny refers to “Heroin” Pills
https://www.healthline.com/health-news/secondary-drug-industry-booming-amid-opioid-epidemic#2- Dr Ballantyne’s Narrative
https://www.statnews.com/2015/11/30/chronic-pain-intensity-scale/- Millennium Opioid Metabolite DNA Test
https://www.millenniumhealth.com/services/test-offerings/- Opioid Serum Measurements
http://paindr.com/serum-opioid-monitoring-wheres-the-evidence/- Medical Advisory Committee
https://steverummlerhopenetwork.org/our-team/- NYT: Addiction Treatment with a Dark Side
Addiction Treatment With a Dark Side- Sharp Rise in Buprenorphine ER Visits
https://www.samhsa.gov/data/sites/default/files/DAWN106/DAWN106/sr106-buprenorphine.htm- Heroin and Buprenorphine Molecular Profile
http://paindr.com/heroin-hydrocodone-buprenorphine-prop-aganda/#comment-334500]- Q&A with Dr. Kolodny, Phoenix House
https://www.kolmac.com/2015/12/qa-dr-andrew-kolodny-chief-medical-officer-phoenix-house/- Fentanyl, as Reported by CNN
https://www.cnn.com/2018/07/12/health/fentanyl-opioid-deaths/index.html- NIH Estimates Pain Patient “Addiction” 5 Percent
https://medlineplus.gov/magazine/issues/spring11/articles/spring11pg9.html- Pain Patient “Opioid Use Disorder” without Risk Factors 0.19 percent
https://academic.oup.com/painmedicine/article/9/4/444/1824073- Rebuttal by Dr. Kolodny and Dr. Ballantyne https://www.politico.com/magazine/story/2018/03/13/opioid-overprescribing-is-not-a-myth-217338
- Morphine Equivalent Dosing
https://www.wolterskluwercdi.com/sites/default/files/documents/ebooks/morphine-equivalent-dosing-ebook.pdf?v3- https://www.wvgazettemail.com/news/cops_and_courts/drug-firms-poured-m-painkillers-into-wv-amid-rise-of/article_99026dad-8ed5-5075-90fa-adb906a36214.html
- Red Lawhern, PhD and Pain Patient Advocate
http://face-facts.org/lawhern/- Jacob Sullum Reason
https://reason.com/archives/2018/03/08/americas-war-on-pain-pills-is#comment- Unleashed, Matt Connarton Interviews Red Lawhern 11/28/18
https://www.spreaker.com/user/ipmnation/matt-connarton-unleashed-11-28-18
EDS and Chronic Pain News & Info 
Reblogged this on The War on Chronic Pain Patients.
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This just may be your most important post yet. I am a chronic pain patient who is severely allergic to opiods (think anaphylaxis and ER visit). So I can very well tell you what can happen to patients whose pain is under-treated or un-treated. I’ve lost many of my normal functions including my autonomic nervous system, sleep, focus and concentration… It took a long time to find pain medication I could tolerate (due to a mast cell disorder) and to figure out how to handle breakthrough pain. Even with this I have some pretty serious limitations. So much everyday stuff that I can’t do. I share your posts often in solidarity with my pain warrior community who can and do take opioids responsibly and are being used as a scapegoat. Are there people who get addicted to opioids? Absolutely. But not nearly as many as one might think. And not everyone is irresponsible enough to let it fester if it happens. I once had a friend who said they were addicted after needing it for severe radiation burns due to a medical error. This friend immediately took steps to recover and never slid into the abyss. Never once bought anything illicit. Never returned to it. … I am not naive enough to not think that pharma companies don’t have their own hand in this conversation as much as the addiction recovery industry. But it is vital that this conversation include voices from the chronic pain community as well as from the scientific community. And you do that well. Thank you.
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It seems like our society wants to blame everyone except the one who ended up addicted: Pharma companies, doctors, and pain patients.
Why do people with addiction get a pass when pain patients are held responsible for their own pain?
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