Ha ha ha, the blogger types bitterly, with no laughter at all in her tone. Did you like that click-bait title? I disagree firmly with the term “epidemic” in reference to opiates considering how many people die in mass shootings (and NOTHING is done! Restrictions are loosening!); from alcohol; from car accidents; from cigarettes. I used it here to make a point that late 2010s’ version of The War On Drugs has gotten completely out of hand. The collateral damage this time? Patients with chronic pain.
I have been so incredibly lucky for at least eight years. Every single time I went to my local ER, since I can no longer use NSAIDs and am allergic to the preferred cocktail published by the National Headache Foundation (thank you very much, jerks), I was given without much fighting on my part the only drug that works for me in the ER, which happens to be an opioid. Even if a doctor wasn’t nice about it – a couple of times I was even piss tested, or made to try others meds first – I always got it in the end, because they cared about my level of pain, my well-being.
I don’t know if this is Trump-related at all; it probably would have happened anyway. But It was announced in Ohio last year that new rules would be in place beginning in 2018 to limit the amount of pain pills to be given to someone in an accident or recovering from surgery. Nothing was mentioned about hospitals or removing legitimate needs from people with chronic pain. Things have seemed to sail along perfectly at my pain clinic, but every time I go I’m terrified I’m going to find a shuttered office with nary a sign on the door. I know how difficult it’s becoming not just for family doctors, who were the ones targeted by the new CDC guidelines a few years ago, but also for pain management specialists and hospitals. That’s why I’ve been so grateful that my local hospital always put my needs ahead of whatever The Feds were telling them.
Then my friend who is a health partner to her severely chronically ill husband alerted me about a letter she received from their insurance, which was soon to be my insurance. None of his opioid prescriptions which he needs for his chronic pain would be dispensed without a prior authorization sent to the insurance by the doctor. EVERY TIME. Even though we ALREADY have to go once per month in person to pick up new paper prescriptions. And I am already urine tested every six months at my clinic. I was worried for her and her husband, but hoped my much smaller dose pill would be exempt. It wasn’t. The first time I went to get it filled, in January, with my new Medical Mutual insurance, I was told that they would only cover one week’s worth without a prior auth. Since I’d been paying out of pocket for the last year anyway, I decided to go ahead and do that and just not involve the insurance at all. But it was worrisome. Less so when the nurse called to tell me I would need one and I told her I’d already paid out of pocket and she said “Okay next time then.” So hopefully they are on top of it.
The ER visit on January 1 was great. But the next two times, which I wrote about in the Bulbous Basilar series, I was treated with skepticism and condescension. EVEN when I had in hand an MRI report from their own Radiology department stating I might have a brain aneurysm. They were both doctors I’d had not had before so I was upset, but hoping it was just those doctors, especially since I’m not supposed to take Imitrex anymore (leading to more ER visits). I asked my friend who works in the hospital and she said the first doctor was the director of the ER and had been for some time, and the other doc was a fill-in who was going to be there more often. She was aware of no policy changes.
After my headache from last night and this morning refused to budge, I got intel from my friend that my favorite doctor was working the ER so I headed on in rather optimistically. But though I was treated well, the nurse practitioner actually told me, “and, you might know, we’re not allowed to give narcotics anymore.” I just said, okay, and explained what I’d been given last time, which made me extremely sedated but did not do much for the pain itself. I’m not kidding that because of my allergies / intolerances, the only medicine for pain they can give me is TYLENOL. When Dr. “Still” came in he greeted me in his normal jovial manner but I know that if I’d been up and feeling better he wouldn’t have been able to meet my eyes, he who’d sent me home countless times feeling SO much better because he gave me what I needed to make sure of that.
Today I also get Decadron (steroid) and Benadryl and Phenergan and Ativan, though I imagine Ativan is another wild card. One of the times I got it as a one mg pill; this time it went in the IV. Despite the Benadryl and Ativan, the Phenergan did make my legs twitch a little bit, so the experience was not the best. And the pain only went from an 8 to a 6. When I said so, they told me the ONLY option they had was to give me another bag of fluids. I chose to leave.
Again, I’d like to emphasize I’m handling this much better than I would have several years ago. However, I am disappointed. I am disgusted. I am feeling indignant, because how is injecting a person at level 8 pain with a drug that some people would misuse a problem? Am I going to like, pee it out and give it to my addict friend? They have my entire history in that file. They know I’m not a drug seeker. I assumed it was the new across the board policy, but later I wondered. Just for chronic conditions? Or just ME? Is there a big red flag on my account?
After I texted my mom to tell her, she sent back “Is this for everyone?” and I answered, “Doubtful. Probably just chronic pain patients.”
Mom replied, simply, “Fuckers.”
And now I’m home, desperately trying to concoct my own cocktail with what I have on hand which isn’t much, trying to avoid looking at how much imitrex I have left (I suspect one 100mg and two 50 mg). Did I run out of Percocet? Yes, several days ago, because I’ve been given the same amount since before I had to cut down on imitrex, and then with all the aneurysm worry I had increased migraines. Does that make me a substance abuser? No.
I have no problem with people with short term pain situations getting fewer pain pills than before. I wasn’t overly concerned with Ohio’s new plan. But now, I am terrified. People across the country who are losing the prescriptions they need to have a decent quality of life are killing themselves rather than live without them. All of us chronic pain patients… are we using them to get high? No. We’re using them to feel normal. Without them, we can’t go to the store or take care of our kids or our homes. We lose our relationships.
The number of pain patients who get addicted to their medications ranges from less than 0% to 11-13%.* Not very high. Like at all. Sometimes medications are diverted, if they aren’t put in a safe location, but most of us know better and lock them in safes or hide them. Diversion happens most often, for example, with the pills Grandma had gotten for her hip replacement. She hated the way they made her feel, and switched to Advil. Grandkid pokes around and finds the old prescription bottle in the medicine cabinet, the lid dusty, in a back corner. And THEY get addicted. Not Grandma. This is what happens in 75% of the cases* when pain pills become a “gateway” to addiction and stronger drugs like heroin which increases addicts’ risk of running into fentanyl, which is almost always lethal. I also hear stories of high school athletes or the like receiving 90 Percocet for a sports injury, and okay yeah some of those people get addicted, because they probably only needed around 12 pills before switching to Advil or Tylenol. I thought that is what the new Ohio law was going to be mandating. Even if that is the case, the new rules are trickling down to Ohio insurance companies and hospitals and even pharmacies, allowing them to become draconian in their limits on these very effective medicines whose worst side effects are constipation or drowsiness. (And believe me when I tell you sleep is a problem for most chronic pain patients so that is more of a blessing. As for the constipation – well, take a stool softener. Don’t you just love medical blogs? No stone left unturned.) So, I mean… come on.
Also worth noting is that dependence is much, much different than addiction. Just as a person with diabetes depends on insulin, a person with chronic pain depends on Norco or Oxy. Addiction is unhealthy behavior. We depend on the drugs to feel healthy and lead normal lives.
And now that I am supposed to not take Imitrex, I’ve also lost my fail-safe, my haven of concerned care and treatment, the fall back option I always could count on. And I have to find a new neurologist. So I’ll just, you know, do a quick internet search for the closest one, or flip through the phone book. Ha ha ha. Recognize that tone? You’re right. No laughter, only tired resignation, bitterness, indignation, and dread.
*Here is the Scientific America article I used as a source for some of these numbers.