This Isn’t About Saving Lives, It’s About Money: Pain Patients & The ‘Opioid Crisis’
If this were about saving human lives, tobacco and alcohol would be outlawed. According to the WHO, “Almost six million people die from tobacco use and 2.5 million from harmful use of alcohol each year worldwide”.
Today, I received news of the FDA’s decision to add more warning labels to opioid medications. This is added to the labels already present. The reason? They’re wanting to address opioid-induced hyperalgesia and allodynia, a common comorbid condition in chronic illnesses.
Pain patients, of which there are 50.2 million as of 2021 according to Science Daily, are aware of the risks. If we take opioid medications, we are doing so as an absolute last resort. No one in pain or disabled would want to do this if they didn’t have to. Having to take these medications is prohibitively restrictive and caustic to our very quality of life.
The amount of freedoms we lose is stunning. The horrific treatment we receive is mind-blowing. The human rights we are losing is jarring and the reality is that, if we don’t have access to those medications, we can lose our lives entirely. It is estimated that the US loses roughly $3B in productivity wages annual due to people becoming disabled. Copious amounts of patients who had access to these medications are no longer able to have them since the 2016 CDC guidelines were published.
Suicides are rampant. A double suicide hit our advocacy and pain community like a train last year, a direct result of a lost provider license. Pain-related events like heart-attack and stroke are on the rise. We are shunned, shamed, gaslighted and treated like trash because we are cornered and have to utilize these medications to treat our pain after all else has failed. God forbid we have a lifelong condition like Ehlers-Danlos Syndrome. I have Ehlers-Danlos Syndrome and multiple comorbidities. My mother’s caused her so much pain that her heart gave out. She was undiagnosed.
Please, PLEASE think if you are a policymaker. I know this is about money and the masquerade is about life. We all know it now. We all know what the endgame is. But, please, please know that we don’t want to die. We don’t want to seek Canada’s MAID (Medical Assistance In Dying) services. We don’t want to have to take these medications. We also don’t want to be treated like we’re the scourge of society.
We did not ask for these conditions. We did not ask to need their treatments.
For those of us in the advocacy community, I cannot actually articulate how bad what we see on a daily basis is. We see countless, dozens weekly, of suicidal patients who have been abandoned by their providers, patients who were force-tapered without warning in spite of the actual wording of the CDC guidelines, patients who have been incarcerated, patients who have been forced to seek MAID services, families of patients who had been left to turn to the street and died of illicit fentanyl overdoses, families of hospice patients who have end-stage cancer and cannot get treatment, patients who have undergone major surgeries and are being given tylenol to manage their pain, patients who have acute or chronic liver failure and are being told to take tylenol despite the damaging effects it has on their bodies..
Anna Lembke, one of PROP’s (Physicians for Responsible Opioid Prescribing) board members and a celebrity psychologist, gave a TedxStanford talk on opioids that was so damaging and extremist that the editors of Tedx actually put up a warning about it. PROP has no problem with fabricating “facts” using bias across the board and they’ve been very clear about that to the point that they offer their own opinions in studies they fund or are involved with, thus rendering those studies useless.
As pain patients, we are constantly at risk of losing our quality of life. Though my personal pain is never 100% controlled (50% if I’m having a “good” or “low pain” day), I can never ask for it to be. That’s not allowed, even though, according to Joseph Amon, a senior researcher with the HRW, untreated pain equates to torture in the human brain and is seen by the United Nations as “tantamount to torture or cruel, inhuman or degrading treatment or punishment”.
We, in order to receive treatment, must sign contracts that, depending on the language therein, we must acknowledge the risks, submit to searches and counts and lose rights to our privacy that most American citizens have without question. We must abide by these rules or we lose our providers. Yes, we understand the risks and most of us wouldn’t dream of intentionally misusing our medications. The harms of these contracts are very profound, though, when worded to the tune of privacy loss and provider loss.
We also understand the risks to our providers. We know the threats they are under. We have seen countless providers lose their licensure, their livelihoods and even their freedoms due to these things. The threat, even without immediate action, remains strong.
My only suggestion, on that note, for providers and disabled patients alike, is to please consider the law as it applies to disability and prescribing:
“The disabled person who uses prescribed medication to ameliorate Disabling Intractable Pain, is thus exercising a protected right under 42 USC Ch 126. Public entities including states, counties, cities and their agencies may not discriminate against disabled persons in the provision of services. 42 USC Ch 126 Subchapter II Part A. (The FDA is exempt in it’s rule-making functions from 42 USC Ch 126, and it’s non-rulemaking functions are governed by an earlier federal law, §504 of the Rehabilitation Act. State agencies attempting to implement guidelines issued by the CDC do not enjoy this exemption and are at risk of being sued under ADA, for any resulting harm.)”
Our medical and medicinal history are at the fingertips of our healthcare providers and they can absolutely refuse to care for us if they don’t like what they see.
These are our realities. The people who make these laws, these policies, by and large are not pain patients, nor are they being in any way affected by their policies. As an example, Andrew Kolodny, the celebrity psych doctor behind Hulu’s “DopeSick”, has referred to pain patients as “PR pawns for big pharma” despite having been a massive crusader himself for suboxone despite its maker, Indivor, being indicted of fraud and racketeering. He himself spearheaded the suboxone/buprenorphine movement. Wired Magazine has been following his progress since 2005 (yes, that Wired Magazine) and has turned their eyes to the reality of what his crusade wrought. Kolodny has gone so far as to state that “NSAIDS are just as effective as opioids”, in spite of a medical study being done by the Medical Journal of Australia that clearly and unbiasedly stated: “clinical application of paracetamol (acetaminophen outside of the United States) is primarily guided by low quality evidence”.
I could go on. There’s so much. While we see this and try desperately to help, people making policy (such as Kolodny) are making millions off of their treatment centers and lawsuits, countless of which have suddenly popped up across the country. It, to me, is no coincidence that Kolodny would, in his own words, “I’d rather see Suboxone out there, even if it is being prescribed irresponsibly or is being sold by drug dealers.” Of course he would. He’s getting paid for it and OUD diagnoses are double-sided, no-win diagnoses. For those unknowing of this issue, OUD is Opioid Use Disorder.
The results of the pro-money, anti-opioid, anti-patient movements have been covered en masse lately, including a recent piece by NBC News in which experts state that “the new opioid guidelines are too little, too late for chronic pain patients”.
The extremist viewpoints of the anti-opioid movement since the 2016 Guidelines has come to new extremist highs. Patients have been given suggestions to seek MAID instead of offered life-saving opioid medications. Patients are actively tracked using tools like NarcXCare or PDMP (Prescription Drug Monitoring Programs). Patients are also abandoned due to their NarcXCare score.
In absence of continued and preventative care, patients have been abandoned and left to treat themselves with things like street drugs such as medical marijuana, which has recently been put to the test and found to be “no better than a placebo”, or heroin or illicit fentanyl.
I personally have a sensitivity to cannabis that seems to seriously alter my heartrate. It also had little to no effect on my intractable (hard to treat) Ehlers-Danlos pain. There’s another issue here. Some patients who are utilizing medical marijuana to help manage their now-untreated pain are developing a rare condition that is life-threatening called RCVS. These people cannot take most OTC medications to treat their pain as it is ineffective. They can also not continue to utilize medical cannabis and are left with one option: opioids. But, where is their representation?
There are, as with any crisis, countless known and unknown negatives.
My point with all of this information is this: none of us who are pain patients can be treated with an umbrella. What the 2016 CDC guidelines effectively did was obliterate over half of our available treatments because of the risk of dependency which is not the same as addiction. Dependent patients in pain are no different than diabetics who use insulin to regulate their diabetes. They are no different than people using wheelchairs for accessibility. What works for some does not work for others.
Because this is a multi-faceted issue, myself and other advocates find it absolutely abhorrent that those unaffected are issuing policy with little to no regard of the public. Having submitted comments to the CDC via Regulations.gov prior to their new guidelines and having had my comment fully removed, I can personally attest to this frustration and confusion.
I will leave you all with these facts.
In 2020, the AMA pleaded with the CDC to revise their 2016 Opioid Prescribing Guidelines (which, by the way, were written by PROP members).
In July of 2021, the board chair of the AMA, Bobby Mukkamala, MD, directly pleaded with the CDC to revise their guidelines, stating that “Patients with pain need the CDC to be their advocate and urge it to rescind the perceived limits on opioid therapy doses or days”. Dr. Mukkamala also stated the now-known truth that the “opioid epidemic”, now refered to as the overdose epidemic, “is now mostly fueled by illicitly manufactured fentanyl, fentanyl analogs, heroin, methamphetamine and cocaine”.
We knew this years ago as it was discussed, cited and published by the pain and Ehlers-Danlos specialist John D. Lilly, M.B.A., D.O., in his published work “Estimating the Actual Death Rate Caused by Prescription Opioid Medication and Illicit Fentanyl”. Dr. Lilly clarified that, when citing overdose deaths via “other opioids”, there was a broad brush used that, according to the CDC’s response regarding the ICD-10 coding itself, specified “no distinction on whether a compound or formula was obtained or manufactured legally or illegally”.
Simply put, this means that:
The overdose rates the CDC used were not properly classified and did not, in fact, justify the 2016 CDC Opioid Prescribing Guidelines being used to harm patients as they were or to limit prescribing or utilize MME (morphine milligram equivalent) limits or thresholds.
Please, if you are a healthcare professional who is fighting for your rights to treat your patients, send the CDC your statement. Speak up. We, the disabled and in pain, cannot fight this fight alone. The reason for the drastic 90/10 media split in coverage is quite simple: disabled people don’t have money. The people pushing these policies do and will continue to profit off of our suffering.
If you are a pain patient, please seek community and support as best you can. There are groups out here, providers, pharmacists, professors and advocates who are actively fighting to make your voices heard. The media is also seeking stories. Please write OpEd pieces. Please speak up. We need every voice.
Last but not least, if you are a family member or loved one of a pain patient who has seen the harmful side effects of these guidelines, who has watched a family member die, who has watched them die by suicide or who has watched them suffer needlessly, please, speak out. Medium is an amazing platform for this. There are other communities and platforms as well. We need every voice.
We aren’t just patients. We’re people.
Besides, this gets really interesting if you think about the fact that most people are given pain killers during surgery because (you guessed it) you can still feel pain when you’re unconscious and your body knows (see: blood pressure spikes).
Yes, that means even you, the non-disabled, non-pain-having people of this country are given opioids.
Again, If this were about saving human lives, tobacco and alcohol would be outlawed. This is about money. People are dying because, of course, money is more important than human life and the people who are making the most of it are the people who literally wrote the policy that doesn’t apply to them.
Update: As of the firs week of May 2023, a CDC-funded study was released regarding the role of certain drugs in the overdose crisis from 2016 to 2021. The study clearly found that oxycodone, previously and continuously labeled by mainstream media as the culprit in the “opioid crisis”, actually had minimal impact on overdoses during the years of the study. As most of the chronic pain and patient advocacy community has been saying for years now, the actual culprit in the overdose crisis has been and continues to be illicit fentanyl. If you or anyone you know has been unable to access life-saving medicines, please reach out. There are community support and legal resources for you.
