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Thursday, December 14, 2017

The Government Doesn’t Think My Pain Is Important

In their frantic attempts to stem the tide of opioid overdoses, all the government is really doing is causing patients already in pain more of it.

I’ve always disliked the federal government, but right at this very moment, my usual casual resentment has morphed into a seething, frothing rage. I’m writing this through gritted teeth, willpower, and the last dose of painkillers I had at hand.

Yes, I am in pain. A lot of pain. On a scale of one to ten, with zero being no pain and ten being the worst pain possible, I’m sitting at a very respectable seven. Why am I in so much pain, and why am I so very angry? I’m so glad you asked.

A Veritable Cornucopia of Pain

I’m not exactly a stranger to physical pain. I have Crohn’s Disease, which is an autoimmune disorder wherein my immune system gets a little overzealous and attempts to eradicate the lining of my guts. When that flares up, it hurts. The best way I can describe it is that it feels like having a nasty case of food poisoning, except it doesn’t go away after a day or two. My last flare lasted about a year.

I don’t think it’s much of a stretch to say that opioids at least saved my sanity, if not my life. My surgical history is long and storied, and it includes an eighteen-month span wherein I had four major abdominal surgeries (and one on my shoulder, just for flavor). I’ve had both shoulders repaired (one of them twice), my tonsils removed at age 19, my sinuses hogged out, my breasts reduced, some fistulas repaired, a cesarean section birth, and a double-handful of sundry others.

The point is: I know pain. We go way back. And I like to think I can tolerate it better than a lot of others. But there comes a point where even my threshold is reached, and the standbys of over-the-counter analgesics just don’t cut it.

Given my close association with pain, it should come as no surprise that I’m just as familiar with painkillers. If you can name it, I’ve probably taken it. Immediate release, extended release, oral, IV, even transdermal patches, at every reasonable dosage (and even, if I’m honest, a few unreasonable ones).

Narcotic painkillers are very good at doing a very specific thing, and I don’t think it’s much of a stretch to say that they’ve at least saved my sanity, if not my life.

The Current Need

My pain is being managed with medication. Or, at least, it was. In the middle of this past November, I found myself in what is generally referred to in medicine as a “pain crisis.” It’s exactly what you think it is: severe pain that is not suitably treated with medicines the patient has on-hand. It was abdominal pain, which I naturally attributed to a sudden flare-up of Crohn’s symptoms. And, of course, it was a Saturday. The on-call doctor at my gastroenterologist’s office couldn’t do anything for me over the phone, so he sent me to the emergency room.

A couple of doses of hydromorphone and a CT scan later, it became clear that my problem this time wasn’t Crohn’s Disease. It was a mass on my ovary the size of a small melon that definitely should not have been there, pushing on things that have no business being pushed on. They sent me home with a prescription for oxycodone and strict instructions to call my doctor first thing on Monday.

What exactly happened between then and now isn’t super-important. The important part is that it has to come out. Don’t worry on my account. I have engaged the services of an excellent surgeon, and the mass will come out soon. And until then, my pain (which is significant) is being managed with medication.

Or, at least, it was.

I had to trek across town during rush hour traffic while in agonizing pain to get my magical piece of paper. Hoops. Hoops for Days.

You see, despite what some news outlets might lead you to believe, prescription opioids are not exactly easy to get legally. First, you need to engage the services of a doctor. Then that doctor has to write you a prescription for the medication. And it does have to be an actual physical prescription. Narcotics cannot be phoned in or faxed in or sent electronically to a pharmacy. Because heaven forfend we allow patients in pain to easily remedy their situation.

And you can’t refill the prescriptions. If you run out and need more, you have to go back to your doctor and get another physical prescription. And God save you if you miscounted your pills and run out on a weekend.

The result: I had to trek across town during rush hour traffic while in agonizing pain to get my magical piece of paper.

Now that you have your permission slip, you have to take it to the pharmacy to fill it. To pick it up, you must present a valid, state-issued photo ID. A driver’s license will do. The ID is not, and never has been, a problem for me, but there are tons of non-sketchy reasons someone might not have a state-issued photo ID.

And this all, of course, presumes that the pharmacy actually has the medicine. Once, I was prescribed a fancy new long-term painkiller. It was just oxycodone, really, but in this super-special time-release formulation (made with pixie dust and unicorn droppings, if the price was any indicator) meant to prevent abusive dosing that had only been approved by the FDA a few months prior.

Nobody carried it as a matter of course. Yes, certainly they could order it for me, but they had to wait until their regularly scheduled opioid ordering day because if they made a special order for it, it would make the FDA suspicious, and they might do an audit, which is a hassle no one needs. I did eventually get it, but it took almost two weeks between receiving the prescription and actually getting the medication into my hands.

And, you know, exotic meds like that I understand not generally keeping around or running out of. But sometimes there are shortages of totally normal, exceptionally common opioids, too. Which brings me to my most recent adventure.

I’m supposed to be operated on in a few days. To get me through until then, I managed to get a fresh prescription for my completely boring, oft-prescribed oxycodone-acetaminophen 5/325. This drug — and I cannot emphasize this enough — is dead common. It’s a low-strength dose. The lowest, in fact, for this particular formulation. Every pharmacy I’ve ever gone to with this kind of prescription should have had it. Locked away in a safe, of course, but they should have it. Except that I went to ten separate pharmacies, and only the last one had it.

Ten pharmacies, Jen, that’s a lot to go to! Why didn’t you just call around and ask?

The soonest they could have the drug delivered to them would be three to four business days. Another good question, astute reader! Because, as of very recently, you can’t. The pharmacist will not answer the question of whether or not they have any stock of a certain narcotic unless you actually walk in there, prescription in-hand, and ask yourself. I know this because at the second pharmacy, I asked them to do just that, and this is what they told me. If I‘m being completely honest, I don’t have any way of knowing if this is simply their company policy or if this is a new government-imposed rule, but I’m fairly certain it’s a combination of the two.

As to why almost nobody had the medicine on hand, I asked. I was told that pharmacies can only receive a certain number of pills of narcotics. These are doled out on a first come, first served basis. Even if they were to run the risk of an audit and order more especially for me, because of — you guessed it — regulations, it would take three to four business days for the drug to arrive. That’s not a huge deal in many cases, but when you’re hurting enough to need opioids, three to four days is an eternity.

To sum up, thus far, I had to drive across town in rush hour traffic to receive my precious permission slip because, due to federal regulations, doctors cannot simply call in a prescription for narcotics. The first nine pharmacies I went to were out of the drug because they may only receive X amount of narcotics at any given time.

Due to federal regulations, the soonest they could have the drug delivered to them would be three to four business days. And, due to yet more regulations, they cannot disclose over the phone whether or not they have any of the narcotics in stock, so a patient must go, in person, prescription in hand, to the pharmacy to find out if the prescription can even be filled. Once they filled it, in order for me to receive the medicine, I had to present a valid, state-issued photo ID.

Their vain attempts to solve a problem are only making life worse for ordinary people. Good Intentioned Cobblestones

I get it, I really do. Deaths from opioid overdoses are skyrocketing. Addiction to these kinds of drugs causes all manner of physical and social problems. I do think that they’re over-prescribed and that people have unrealistic expectations of what severe pain management should accomplish. But I’m here to tell you that appointing an Opioid Czar and strictly restricting access to said drugs is not the way to stop the “opioid epidemic,” if I may use the term.

People, good people, people with families and jobs and homes, people who just want to be able to do something that approximates functioning, are having serious issues getting medicine that they need. Because they’re having trouble getting medicine their doctor deemed they needed, more and more are finding themselves in pain crises and heading to their local emergency rooms for relief, clogging up an already-congested system and causing delays in care for people who are dealing with other critical emergencies.

I have every confidence that these regulations and guidelines were made with the best of intentions, but the road to hell and all that. As so many government actions do, their vain attempts to solve a problem are only making life worse for ordinary people who are already suffering.

When the government involves itself in healthcare and trying to save us from ourselves, people get hurt, in this case literally.