Drug Commercials

I may have unintentionally helped designed a biopharmaceutical commercial. Yeah, it was weird.

I have life-limiting brain cancer, technically known as glioblastoma. I’ve survived 54 weeks of treatment, and have been No Evidence of Disease for longer than I was initially projected to be alive. As a result, I’m more than happy to talk to other survivors, researchers, residents, etc; I feel this is both a form of public service for the cancer community, and the exact same reason you want to talk to your kids about sex, drugs, and mental health — if you don’t, someone else will; and there’s a big chance they’ll get it disastrously wrong. Survivors live with the horror of a scientific community that is rarely engaged with us, and they usually get it dramatically wrong.

So, whenever I see someone looking for input into this disease, I usually hit “Reply.” It’s like swiping right on Tinder — three-quarters of the time, I never hear back. Last week, however, all of my self-submitted research dreams came true, and I got a call-back from a researcher working for a biomedical device company that rhymes with iTunes (or iTune, but that’s not a thing). I don’t know what my legal exposure is if I name it directly, but you will know about this device if, God forbid, you get diagnosed with GBM. The experience itself was as tame as any brush with ableds can be, but it was illuminating as to how ableds think about disease.

In this specific instance, all of the proposed commercials assumed a vast swathe of knowledge on the viewers’ part that, as far as I know, is nonexistent. The odds of you knowing someone with brain cancer are very, very low; however, the odds of encountering a sarcoma or lung cancer survivor whose disease has metastasized are surprisingly good, at which point, the news, “Hey, you’ve got brain cancer… in addition to the sarcoma” is hardly surprising. Devastating, certainly, but not surprising. Ableds know how to market drugs for acute conditions (stuff that sets in quickly and is usually dangerous) — it’s the classic, “Dan used to be a normal white man, until a fungus ate his foot right off. But, with Johnson and Johnson’s Fungal Wielding; he was able to solder that thing back on and get on with his life.” It’s a far harder, darker sell to go to, “This is Deb. She’s 68, married, has four kids, and six grandkids. She was diagnosed with metastatic breast cancer four years ago, and was living with cancer, UNTIL…” but that’s a little more like the standard GBM story I hear. You can’t really market, “Grandma’s in immense misery, has been for quite a while, BUT, we can prolong that suffering” without coming off as Josef Mengele (which reminds me, I’m seeking legal representation for my children’s book, Grandma’s In Debilitating Pain and Not Long for This World).

Whenever facing a deadly disease with a ton of comorbidities (I have cerebrovascular disease, thanks to radiation therapy, folx), it’s kind of hard to get that news AND then make the immediately-required decisions about treatment if you haven’t even heard of the disease (as was the case with my first brain tumor)(it’s a long, weird story). Even if your oncologists walk in with a stack of pamphlets for treatment options and a complete pro/con list of each treatment, the odds of you randomly recalling the iTune jingle are slim-to-none.

The good news is, I did manage to communicate the importance of cancer support groups and how isolating some of these diseases are; the bad news is, I might have unintentionally given drug companies the idea of privatizing and licensing that (I’m not sure how that would work, but I also had to spend ten minutes explaining to a marketing researcher why most people don’t usually think of brain cancer whilst watching television, so, clearly; one party is misjudging the other). The other good news is; I might have cracked the code on the “restless leg syndrome” conundrum. For those living in civilized countries, in the US, drug companies are allowed to market their wares on television — probably with mixed results (my ulterior motive in talking with the marketers was to steer them toward a PSA on brain cancer and treatments, but I doubt they’re going that path, given US foreign policy was posted on Twitter, daily, we’re not a subtle people). This leads to all sorts of fun misunderstandings between ableds, cripples, and drug companies, usually along the lines of “They’re inventing illnesses to sell snake oil.” We’ve kind of seen the lethal results of that mistrust (and, credit where it’s due; biopharma companies are not helping their case or rebuilding public trust between the medical community and the communities served by medical practitioners), BUT, what if I told you that, as a result of chemo, me and a lot of cancer survivors I know of suffer from that (we don’t call it “restless leg syndrome,” though, we usually call it “cramps” and walk it off)(if this happens at 2 am, just stand up, take a few steps, and see if that helps)(if it happens again, and again, talk to your physician about a prescription).

So, when you see some bizarre ad for a treatment for some rare disease you’ve never heard of, yeah, it could very well be some drug company trying to make a failed laxative profitable, but it could also treat a very legitimate, very rare disease, and the development process of that ad pitted researchers, patients, manufacturers, and Madison Avenue all against each other, and the off-putting, confusing ad was the inevitable product.

Which is not to defend anyone, least of all, me (I talked to the drug company, after all; I sort of brought this weird-but-harmless experience on myself), just to say that there’s a whole lot happening in Disease Country that most people can’t be arsed to research, and we could all put drug commercials to rest immediately if we actually all became slightly-more scientifically-literate (yeah, for everyone who thinks Critical Race Theory is too much for school children, you’re going to be traumatized when you learn that Dr. Jimsonweed’s undergraduate scientific background is woefully lacking), and started talking to other folx with chronic diseases.