My Story: Why Is Everyone So Quiet About Rx Opioid Shortages?
/By Kimberly Smith
I am a chronic pain patient in Florida with multiple modalities of pain: chronic intractable pain, pain from a sports injury, and pain from an autoimmune disease. To further complicate my situation, I also have a list of allergies and genetic mutations that leave me unable to take aspirin, NSAIDs, gabapentin, codeine, and morphine for pain relief.
I have a background in medicine, pain management and hospice, so I’ve always been mindful of the spectrum of things that can go awry with opioids. I keep myself on a stable dose with the goal of just “dialing down” the pain enough so that I can function, while not relieving it entirely.
Fifteen years ago, when public attitudes started turning against opioids, I was switched to a fentanyl transdermal patch because it was “less likely to be abused.” I had hoped to avoid using fentanyl until my final days, knowing that once you’re on fentanyl for an extended period, it’s a nightmare if you have to switch to anything else and potentially deadly if you suddenly stop.
Starting in September, I started having trouble getting fentanyl patches at the CVS pharmacy I’ve been using for 30 years. Instead of the Mylan fentanyl patch that I’ve been using for 15 years, CVS only had a fentanyl patch that used a completely different type of adhesive mixture -- one that I absorb inconsistently and too quickly.
I had two absolutely frightening episodes using that patch where I couldn’t catch my breath. I don’t think anyone would blame me for never wanting to try that brand again (Alvogen).
Now I call random pharmacies each month, trying to find the Mylan patch. The supply itself is dwindling and here I am needing one of the only two fentanyl patches still on the market. It’s insane and I’m constantly stressed, anxious and overwhelmed.
Today, I called the CVS pharmacy about my second opioid, oxycodone 30mg, and was told this is the latest opioid that is only coming in sporadically. I’ve been having to use the oxycodone as a replacement for the periods when the pharmacies couldn’t source the fentanyl patch, so I no longer have any type of emergency supply (nor do I have the opportunity to build one up).
For me, this is the absolute end of the road for opioids. I lack the CYP enzyme to metabolize morphine and I have an additional mutation that affects the efficacy of the metabolic processes, so I require higher doses than “normal.”
I’m in a terrible, terrible situation and I’m by no means alone. I’m starting to dream about it every night. My doctors and the pharmacy team who have been caring for me for decades are stressed and concerned, and all have made tremendous efforts to help. But without access to the two medications I need, their hands are tied.
One of my pharmacists searched the entire state for my meds for 9 weeks and couldn’t find any. I still have many friends who are pharmacists, pharmacy techs, doctors, nurse practitioners and physician assistants, and they’ve been telling me awful stories about how much time they spend trying to resolve the opioid shortages -- not to mention the emotional toll caused by listening to patients cry and panic about being left to endure horrible pain and withdrawal.
I don’t understand why everyone is staying quiet about this problem, especially when the shortages affect the entire hospice system, oncology patients at cancer centers, anesthesia and twilight sleep procedures, emergency medicine, trauma medicine, surgical procedures, acute pain and, of course, chronic pain.
Doctors and pharmacists have been responding to the shortage by moving their patients to other meds, which is exactly the harm that I suffered when I was taken off the Mylan patch. This further squeezes the availability of the meds that are available and pushes those patients out to make room for the patients who were on something else. Even gabapentin is unavailable at many pharmacies. This situation is dire and getting worse.
If politicians were smart, they would support legitimate patients and the relief of chronic pain by making immediate changes to provide opioids to those who need them. All of the patients who are suffering would absolutely cast their votes for anyone who relieved their misery and gave them their lives back.
Instead, the politicians just assume that pain patients don’t vote and write us off. This is incredibly shortsighted. We do vote - when we aren’t struggling with pain and forced withdrawal.
I’ve reached the point where I am legitimately scared about my future. The shortages will just grow worse and worse, unless and until sweeping, radical changes are made. Most of us wouldn’t last two to three months without opioid medication, and some wouldn’t be able to endure just one.
While I see endless reports about Biden and Trump in the mainstream media, there’s not a word about the opioid shortage crisis and the direct harm being visited upon legitimate patients. Diversion rates are low, overdoses are primarily caused by illicit fentanyl (a completely different substance than Rx fentanyl) and desperate patients feel forced to turn to the streets.
Isn’t this a violation of the spirit of our Constitution? It is certainly cruel and unusual punishment. We who follow the law and contribute to society are being cruelly punished for the bad behavior of others -- behavior which is basically a lapse of morals and mental health issues, which cannot be legislated away. We need to change the media narrative and shame the politicians and policy makers who created this mess.
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