Thursday, October 13, 2016

Magic Bullets

If you have a chronic illness or condition, you're always looking for a "magic bullet" cure. 

Only a few days after I started writing O.H.M., I happened to have a pretty bad eczema flareup. Here's what I wrote at the time:
I've struggled with the common trifecta of allergies, eczema, and asthma my whole life. Sometimes it's a simple nuisance. Other times it's put me in the hospital. It ebbs and flows, but over time, it's gotten worse. I've given up on trying to find a cause or a cure. I've been to dermatologists, naturopaths, acupuncturists, allergists, online forums, and Chinese herbalists from Alaska to California to New York City and back. I've eliminated allergenic foods from my diet. I've taken herbal supplements. I've been on systemic immuno-suppressants, antihistamines, and steroids, both topical and oral. I've tried every lotion, cream, and ointment on the market, both prescription and over-the-counter. I've come to accept that my body is just sensitive to the world, and that like bad weather, I just need to hunker down through the squalls until they blow over.
Since then, I've done a few other posts about my eczema/allergy/asthma problems and how they impact my quality of life. Because it's not fatal or life-threatening, I feel like I'm not entitled to be annoyed by it, but it is a big quality of life issue.

It really limits what I can eat and where I can go. When I show up at someone's house for the first time and they have a cat, I have to go home or spend the whole time outside. When I check into a hotel, I have to call ahead to make sure they take all the down pillows and comforters off the beds. Plenty of people have seasonal or mild allergies, especially to animals, but then I sort of have to explain that no, this is kind of worse than the sneezing and watery eyes you're used to seeing. My skin acts up under stress. The last two trials I had in Anchorage, I had to ask my friends and co-workers to bring me bleach, so I could take a bleach bath in my hotel room (I know it sounds crazy, but it really helps--I won't bore you with why).

So naturally I was thrilled to hear about a new "biologic" due to be released this March, which has shown a lot of promise in clinical trials. The drug is called dupilumab (brand name: Dupixent), and it's a targeted immunotherapy delivered by periodic injection, similar to other targeted immunotherapies that have been used in cancer trials in lieu of chemo. 

I immediately emailed my dermatologist in San Diego, who is super thorough and always up on the latest research. He was as excited about it as I was, and he's a pretty understated guy. He gave me some resources to read up on it, and contacted the medical liaison for the pharmaceutical company that makes the drug to see if I could get a "compassionate use" exemption for early use. 

Then came reality. I started to do more research, and I realized it's a very serious drug and no one knows yet what the long-term side effects are. No one knows if the drug will keep you in remission or if your symptoms will return the minute you go off it. Which matters a lot, because it costs $60,000 a year. I'm lucky I have insurance, but good luck getting my insurance to cover this. 

Suddenly another magic bullet wasn't looking so magical after all. 

Maybe I'll get this drug, my insurance will cover it, and it will work once and I'll live happily ever after, but my real point is this: As tempting as it is to get excited about a miracle, it's healthier and a lot less frustrating to plan for life without one.

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