Imagine that you're a polar bear.
I'm not talking about a polar bear as in the Bowdoin College mascot. I mean a real polar bear -- and not just a random one hanging out on the ice floes above the Arctic Ocean or wandering the barren tundra of northern Canada.
The furry white creature I have in mind is an inmate at, say, the polar bear exhibit of the Pittsburgh Zoo. (I chose Pittsburgh because I've been to that zoo, but there are also polar bears at the zoos in Detroit, Columbus, and even Madison, Wisconsin.)
If you're that polar bear, which role would you like to play: Would you like to be the classic charismatic endangered macrofauna, exploited via cute pictures of you in your faux habitat used by the nonprofit organization that hosts you, as a part of a fundraising campaign? Or would you rather devote your image, and your reputation, to raising hell around efforts to preserve your natural habitat and subvert the otherwise inexorable descent into planetary uninhabitability?
Should you be inclined toward the latter choice -- as I certainly would be, if my fur and poop were white -- then you have something important in common with my daughter Rose. Something in common, I mean, beyond the fact that she actually is a polar bear because she is a sophomore at Bowdoin.
As a person with cystic fibrosis (PwCF), Rose has no interest in being a CF poster child -- exploiting her charismatic image for the purpose of drawing attention to, and raising money to conquer, the disease. To Rose, that would feel too much like being that zoo-confined polar bear whose image was pressed into service for fundraising purposes.
To quote Jerry Senfield out of context: Not that there's anything wrong with that. Plenty of PwCFs, and their families, have used their compelling images to great effect -- most notably to raise money for the Cystic Fibrosis Foundation (CFF). The CFF is the best disease-conquering charity in the business, and I personally am more than happy to let the Foundation use my handsome face in support of its fundraising efforts. I know, and you probably also know, that Rose would be many years dead by now except for the good work of the CFF. Read all about it in science journalist Bijal Trivedi's book Breath from Salt.
Rose wants to be the polar bear who agitates for a planet that makes zoos unnecessary. That's why she spent her summer interning at ICER -- the Institute for Clinical and Economic Review, based in Boston -- and is continuing her work with them on a part-time basis. ICER does what in a better world the government would do -- investigate the reasonableness of prices charged by Big Pharma and biotech companies for new drugs and treatments.
Why is that use agitation? Because -- and I have said this before -- I believe the biggest threat to Rose and all PwCFs is that civilization itself will fail them. And if that failure comes, I fear the leading edge will be a determination that certain drugs are so expensive they can only be made available to an elite few. Big Pharma and its astroturf (i.e., fake grassroots) organizations have worked hard to convince members of the CF community to attack ICER, almost always on spurious grounds that question the integrity and good intentions of the organization. Rose knows this is BS but, alas, she's an outlier among PwCFs, at least in that regard. (The photo, by the way, shows Rose and her horse Diego at the North American Youth Championships in August, the big dressage event of the year for young practitioners of the sport, held this time in Traverse City, Michigan.)
The CF community danced joyously in late 2019 when the Food and Drug Administration approved Trikafta -- the triple combination of "modulator" drugs that, for the first time, made a treatment for the cellular defect that actually causes cystic fibrosis (as opposed to treating the disease's symptoms). Rose is not eligible for any of the modulator drugs because of her exotic CF mutations. But that's not what made us sad. Our problem was the shockingly high $312,000 annual pricetag unilaterally imposed by the drug's owner, Vertex Pharmaceuticals. When Rose's miracle comes, as I am certain it will, that medication will bear a pricetag comparable to Trikafta's. (One more sentence??]
In light of the above, and in honor of a very successful year for Rose in which she avoided hospitalization, rode Diego to glory after training with him intensely, had a marvelous semester at Bowdoin even though the whole thing was remote, did that ICER internship, worked for the campus newspaper, served in student government, and even joined Bowdoin's Peucinian Society (if curious, use google), I have an ask....
Please consider making a donation in Rose's name to the Cystic Fibrosis Foundation.
Just follow this link: https://give.cff.org/tribute/Rose