In March of 2016, The CDC posted guidelines for opioid prescriptions (1) that would have some of the most devastating consequences for patients with chronic pain. While the intention may have been to curb opioid overdoses, which is a tragedy in its own right, pain patients have been forgotten and left to suffer, and in some cases commit suicide after forced tapering. (2) In the three years since they were issued, the CDC has advised against the misapplication of the guidelines, (3) and the authors of the guideline admit that they have been greatly misapplied. (4) However, the guidelines have not been directly changed or removed.
The CDC Guidelines have resulted in government crackdowns that have left many pain patients without their medication and without recourse. In a recent survey, 85% of pain patients responded that the guidelines have made their pain and quality of life worse; 50% responded that they have considered suicide as a result. (5) People like to say that pain is temporary, but for many, it is not. For many, that pain is only temporary insofar as they will die one day. It should therefore come as no surprise that chronic pain leads to an increased risk of suicide. (6) Jay Lawrence of Tennessee took his own life with the support of his wife after medication was tapered. (7) He is not the only one; there is also Phillip Kuykendall of North Carolina, Allison Kimberly of Colorado, Ryan Trunzo of Massachusetts, Kevin Keller of Virginia, Mercedes McGuire of Indiana, Bob Mason of Montana, Zach Williams of Minnesota, Donald Alan Beyer of Idaho, Doug Hale of Vermont, Travis Patterson of Texas, Sherri Little of California, and Katherine Goddard of Florida all died from pain related suicides. (8)
Pain not only kills with threats of suicide, but with risk of complications and dying in preventable agony like the case of Dawn Anderson. She had the misfortune of getting her medication at a pill mill, and when it was shut down no doctor would take up her pain management (9) She begged her primary care doctor to continue prescribing the medication she desperately needed and was ignored (10) Dawn passed away on March 11, 2019 in a hospital from complex medical issues that were no doubt exacerbated by untreated pain. That’s just one example of horror that pain patients face when they are abruptly tapered off their medication. Pain patients like Emily Ulrich (11) and Danny Elliott (12) have suffered through these taperings, and their quality of life has dramatically suffered. Even cancer patients, supposedly exempt from these guidelines, are suffering needlessly from reduced opioid prescriptions. (13)
It truly should be a moral outrage that people are left to suffer and often die, all based on a lie. Most people who get addicted to opioids do not do so through legal opioid prescriptions. However, in spite of the evidence of this, the stories that end up in wide circulation in media are the ones specifically selected because they fit this narrative. (14) One study has shown that medicare patients treated with opioids are at the lowest risk of addiction. (15) Furthermore, another study showed it is friends and family that are more often the gateway to addiction as opposed to doctors. (15) This doesn’t mean the risk of addiction is not an important issue, but one’s own risk of addiction is a lot more complicated than the story that has been continuously fed through the media and should be decided between a doctor and their patient, not the CDC or the government.
There is also a general misunderstanding of drug dependency and calling it addiction. When in truth, many people become dependent without developing an addiction.(17) In spite of this, patients with a developed dependency continue to be dangerously cut off and some will inevitably turn to illegal opioids.(18) Addicts will continue to be inadequately treated, opioid prescribers needlessly scapegoated, (19) all while overdoses from illicit drugs are still growing at an exponential rate. (20)
Despite all attempts to curb the opioid crisis through the reduction of legal prescriptions, fentanyl deaths have been doubling every year (21). Pill mills have been shut down, legal prescriptions are down, and yet somehow the overdoses continue to rise. (22) All of this comes at a cost, as pain patients are consistently stigmatized by healthcare workers as pill seekers. (23)
Addiction is a terrible affliction, and one that is not well understood. However, restriction does not treat addiction, and instead is creating a new set of victims: the pain patients forcibly tapered or completely cut off from their medication. This is unacceptable. Compassion and fact-based medicine should be the core of how we treat addiction, not restriction that ultimately ends up hurting both addicts and pain patients. It is time to admit that we, as a society, have made a mistake. It’s time to admit there’s a lot we don’t know about addiction and how it really works. And lastly, it’s time to ask ourselves if causing the needless suffering and death of thousands of pain patients is an acceptable way to try to combat the problem of addiction and overdose. How many people have to suffer in unnecessary pain? How many more overdoses and suicides need to happen before we can acknowledge that this is not working?
In our desire to battle addiction, we must not forget pain patients. We need to start listening more to those of us who have been screaming for so long about our pain. I am a pain patient who was suddenly cut off from opioids when the guidelines were released, and I am outraged! I had to fight tooth and nail to get my medicine back, and even still I face stigma. I have reliably taken opioids many times over the years without any abuse and yet I’m treated as if addiction is inevitable. I also come from a family of addicts and have lost people I love to addiction. I understand that pain, and it’s why I resent these restrictions that are little more than security theater. Pain patients are either losing their quality of life, or their life entirely, because #PainKills. We have the means to relieve people of their pain but choose to withhold it because in truth, addiction disgusts us and we’d rather restrict access than face the issue head on.
I encourage my fellow pain patients to tell their stories using #PainKills and for allies to help boost our voices, maybe post one of the many articles I have cited. Either way, we need to get our stories told. We need people to understand that opioids are a useful medication, that pain relief is a worthwhile goal, and that not all pain conditions are curable. We need to stop stigmatizing pain relief and start treating it as a basic human right. We must keep the conversation of prescriptions between us and our doctors! We cannot continue to tolerate the government going after doctors for treating people in unimaginable pain.
We have seen how #PainKills by taking the lives of those unable to see another way out, and how #PainKills our ability to have a meaningful life without sufficient pain medication. We cannot afford to go unheard anymore.