|“Janus” (oil on panel) by Mary Jean Ansell|
My hands are back. In all their crocheting, jewelry-making, baking, yoga-doing glory.
The dark cloud of MTX has lifted from my whole life—along with the wolf that gnaws on the joints in my fingers, wrists, and elsewhere.
I know prednisone isn’t a long-term solution, but for now, it’s given me a facsimile of my old life back.
And for that I’m thankful.
Several of my good friends are firm believers in free market economics. They argue that regulation gets in the way of supply and demand, and that the market will find its own equilibrium (i.e. “balance” or “correct” itself) without the interference of regulators. I have gotten into some very heated arguments about the regulation of healthcare and drug companies because I don’t believe that these industries can be treated in the same way as other sectors of the market. I’m not going to address the issue of the regulation of healthcare/insurance right now because the scope of that argument is way beyond a single blog post. What I do want to point out, however, is the necessity of proper regulation of the companies that manufacture medications.
Prescription medicines cannot be a free market. Why? Because consumers have neither director control nor significant choice when it comes to the medicines they are prescribed. Certainly we can ask our doctor to prescribe a less-expensive alternative (when one exists) or choose not to treat a given condition or illness, and we have a choice about where to get our prescriptions filled. But in many cases there will be a single drug—or set of drugs—that provide ideal treatment for us. Sometimes the ideal drug will be incredibly expensive (see: Biologics) due to the research and clinical trials that were necessary to bring the drug to market. Other times the ideal drug will be extremely inexpensive (see: Prednisone, generic tricyclic-antidepressants, etc) because it is off-patent and inexpensive to produce.
My health insurance has a $1500 annual prescription limit, so I’m lucky that the vast majority of medications I’m currently taking fall into the latter category. (And no, I do not have a “choice” to purchase a different plan from my employer, nor can I afford to purchase another kind of private insurance). But it means that my doctor and I must be strategic about the drugs we choose, and that when/if she decides that a biological medication like Enbrel, Rituxan, or Benlysta is necessary for my treatment, I will need to seek financial assistance from an outside entity like a charity or from the individual drug company that produces and distributes the medication. It is up to me to know what drugs are covered, what drugs are not covered, and how I am going to distribute my annual benefit.
|generic MTX vial|
Yet sometimes something goes terribly awry, usually at the level of manufacturing, and suddenly a drug which previously fell into the “generic” and “inexpensive” categories becomes a hot commodity. Right now that’s the case with my old nemesis methotrexate. This article from the New York Times outlines the current situation, focusing on methotrexate’s utility as a life-saving treatment for childhood cancer, though the drug is also widely prescribed for a broad range of autoimmune conditions. The problem, as I see it, is that there is little profit to be made on a drug like generic MTX, so when one manufacturer (out of five) has to recall a drug because of a manufacturing issue (like, “Ooops, we found a bunch of glass shards in a whole batch…“), there’s no [financial] incentive for the other four manufacturers to pick up the slack, even if by doing so they will potentially be saving lives.
A situation like this also raises the issue of who should be in charge of making sure the company is using the correct manufacturing techniques and properly inspecting the finished product so consumers aren’t harmed. The free market economist might argue that the demand and supply would be enough, but I disagree—particularly because consumers rarely have a choice in which manufacturer their generic drug comes from, nor do pharmacies make this information readily available. Unless an agency like the FDA steps in, there is no reason for the companies not to choose the most inexpensive manufacturing process, even if it means a minor decrease in quality, and make those products available for sale. In this case, harm to individuals becomes a number, a probability, a risk-benefit analysis that is disconnected from the experience of actual human beings.
So then the drug goes on the grey market, and people are suddenly paying 80 times more for the drug than they normally would. Ultimately this brings me back to what I see as the key ethical question at the heart of debates about healthcare: Should access to treatment be tied to one’s income and economic power? Or do all people deserve access to life-saving drugs and medical procedures, regardless of income? Should drug companies be driven by profit? There are those who argue that the only way new drugs will be developed is if there’s the possibility for major profit once the drug is released. That strikes me as a chilling state of affairs.
Our perfect companions never have fewer than four feet. ~Colette
I’m writing this post with my new Dragon Dictate software. I’m not sure I’ve quite gotten the hang of thinking out loud–literally–yet. It’s strange to hear my own voice echoing against the walls of my apartment, a space that is usually so quiet. My cat, Stella, is sitting on the couch next to me. We both just heard the sound of another cat meowing and turned to look at one another. She has now turned back to the more important task at hand, napping, and tucked herself against my left hip, her chin resting on her paws. I think that she is used to hearing me address her in the singsong baby talk voice I always swore I would never use with a pet or child. This strange, serious dictation voice, however, is not my “normal” voice, singsong or otherwise. But I’m not worried. I’m sure we will adjust to this, just as we have adjusted to all the changes we’ve both encountered over the past six months.
I resisted adopting a cat for many years. I always said I was “more of a dog person,” or that I was too busy to have a pet. And I was. In a previous life I was gone every other weekend, flying to New York or Los Angeles, attending conferences, always on the move. But then I got sick. And not briefly sick, like I had been before, not sick for a few weeks or a month, but sick for months and months. And suddenly that part of my life ended. The radius that separated me from the circumference of my life shrunk from thousands of miles to less than one hundred. Travel began to take serious planning and mean a gamble with my health. I’m not even sure that I was aware of this at the time. I was too busy with the business of being sick, and trying to get well. I know I didn’t grieve the shrinking boundaries then.
The Sunday before Labor Day, I decided to take a trip to the Atlanta Humane Society. I told myself I was “just looking,” but I picked up a litter box just in case. I spent time with four cats that afternoon. In the last 30 minutes before the shelter was closing, I met Stella. Or maybe I should say that Stella found me. And now I can’t imagine my life without her. She keeps me company while I’m working, she greets me at the door when I come home from school, she sleeps next to me on the bed and sometimes—when I wake up in the middle of the night—I reach out to pet her and I am reassured, just knowing she’s there.
This entry was composed as part of the ChronicBabe blog carnival “you are loved.”
So, methotrexate and I broke up last week. During the past two-to-three weeks I’ve been having a major flare of skin and joint involvement and my rheumy and I decided we needed a different strategy. Of course, my labs are still somewhat (totally?) incoherent, so the strategy is “dampen the inflammation with low-dose prednisone and NSAIDs and see what develops.” So no more needles (for now), no more weekend-long MTX hangovers, no more collapsing into bed at 7pm, and no more disgusting cherry cough syrup (to fight MTX brain fog). I feel like a human being again. A human being whose feet and hands have returned almost to their normal size. Of course that’s probably just the prednisone talking, but I’m so excited to feel like myself again that I’m willing to take whatever I can get.
I know all about the downsides of long-term use of corticosteroids—osteoporosis, elevated blood sugar and diabetes, glaucoma, etc—so I’m hoping we can find a better [biologic?] solution for my situation. In the meantime, though, I’m beginning to find my way into a quality-of-life balance. Sure, the MTX might be safer in the long run, but what good is it if the side effects are totally disabling and it’s only partially controlling my disease? Is it better to be on MTX and be unable to exercise due to fatigue than to be on prednisone and have the energy for moderate physical activities? Which is better or worse for my heart, my lungs, my brain, my soul?
I’ve always been a planner—I like to joke that I have a back-up plan and a back-up-back-up plan for my Plan B—but sometimes I simply have to ask myself “what do I need to function (and even enjoy myself) right now?” Because right now is the only guarantee. I gave MTX 4 months of my life and I’ll never get them back. It was worth the gamble, since it could have been a miracle drug for me, but it wasn’t. Next!