Those of us with systemic autoimmune arthritis often hear that we are “too young” for arthritis, though we know we are not. If we spoke openly about our health conditions, we would also probably hear frequently how we are “too young” to die. But the truth is that we’re not too young for that either.
In the past week I’ve seen several news stories about the death of 23-year old Sasha McHale, daughter of former Minnesota Timberwolves coach Tom McHale, from lupus-related complications. Then, just in the last few days, I found out that Laura, of the blog Still’s Life, has died of complications from Still’s disease (Juvenille Idiopathic Arthritis). I did not know Sasha, and I wasn’t close to Laura, though I knew her through the twitter #rheum community, so I don’t want to claim that I have any stake in grieving for these two women, except in the way that anyone must grieve for an individual whose life ends just as it should be beginning. And for that I do grieve, as I did for Simone Watson, an Atlanta college student who died from lupus complications just days before her graduation with a dual bachelors/masters degree last spring.
I find myself combing the news articles and memorial posts, trying to figure out what lies beneath the opaque phrase “complications from lupus” or “complications from autoimmune disease.” Did they know this was the end? Or did it come as a surprise to them, as it did to us? I wonder how hard I should be pushing myself, how much time I have left, whether pushing too hard—for my career, for my scholarship—means less time to be in this world that I love with the people I love. I wonder what it is I can offer in return, to make sense of such senseless loss. I’m not afraid of death, but I’m not ready to be done here. Not by far. And I can’t know, but I suspect Sasha, Simone, and Laura weren’t either.
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.
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!
“Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and our freedom” —Victor Frankl
I’m not sure what has changed in the past few days, but I feel like I’ve gone from a mental space of worry to one of relative peacefulness and acceptance. It doesn’t feel like anything has changed inside of me; in fact, I feel just as lousy as I did last week—the usual MTX gripes and joint pain along with a bonus infection. But something has definitely shifted.
I’ve been dancing since I was three years old. That’s over 90% of my life. Around the time I turned 10, I decided that what I really wanted was to be a ballet dancer. I spent hours every day in dance classes, not just ballet, but other kinds too, and I put every once of energy I could find into it. The first time I had a major injury, which in retrospect was probably a disabling flare of inflammatory arthritis, I was 12. My knee swelled up and the soft tissue began to calcify, so I had to take 6 weeks off from dance. I didn’t mind getting excused from middle school PE class, but having to sit out ballet class was the worst. I had just been allowed to start wearing pointe shoes the year before and it had been one of the proudest moments of my life.
|Dancer’s Shoes by Neville Elder|
Whether you’ve seen Black Swan or not, you probably know that ballet is a punishing art form, calling for an incredible amount of work, dedication, and control. The body standards for professional dancers are harsh and unforgiving, and many many dancers admit to controlling their weight through unhealthy means like laxatives, heavy smoking, and disordered eating. The funny thing is that I never fell into those habits. I was naturally thin, I had strong muscles, innate musicality, and I could forget myself in the challenge of a dance class like nowhere else. My freshman year of high school I was in a production of the Nutcracker with a local professional ballet company and I idolized the older girls who danced the principal roles (while also working on college degrees— I remember them reading psychology textbooks backstage between dances). A year later, I got sick again and then went through a growth spurt and wound up at nearly 5’10”. I knew I wasn’t going to be the next Suzanne Farrell, so my ballet career took a backseat to my interests in theater, music, and writing, but not without a great deal of mourning. I’ve continued to take ballet classes on and off as a adult and it’s one of the things that I’ve missed most during the past 9 months that I’ve been acutely sick. Dance requires and engages every ounce of my attention and creativity. It makes me feel alive and grounded in my body in a way that few other experiences do.
The girls in the video below describe their techniques for “breaking in” their pointe shoes. I had my own technique, involving rubbing alcohol and a lot of bending, plus tape for my second and fourth toes and a special way of sewing on my elastic. In particular, I like that the video shows the reality of dancers’ feet. The irony? Arthritis has done far more damage to my feet than ballet ever did. I now look like I have the dancers’ feet I might have had, but from autoimmune arthritis, rather than years of classes and rehearsals.
In looking for references to Suzanne Farrell, I discovered that George Balanchine’s fourth wife, Tanaquil LeClercq, whom he divorced to try to woo Farrell, was struck by polio at the age of 27 and paralyzed from the waist down, ending her dance career. The Wikipedia article about LeClercq describes the horrifying irony (in retrospect) of her first dance with Balanchine:
When she was 15 years old, George Balanchine asked her to dance with him in a choreography he made to be performed at a benefit for a Polio charity. In this ballet, Balanchine was a character named Polio and Tanaquil was his victim who became paralyzed and fell to the floor. Children tossed dimes at Le Clercq, whereupon she got up and danced again.
|Tanaquil LeClercq, 1947 by Irving Penn|
I suppose none of us is immune from broken dreams and lost opportunities, with or without chronic illness. But life goes on (I hope), becoming rich in new ways if we can be open to it. I would, however, prefer no one throw dimes at me during the process.