Cancer Gadfly: Drinking the Big Pharma Kool-Aid.

“Immunotherapy Drug Fails Lung Cancer Trial.”

Naturally the headline caught my eye since I have been reading about lung cancer since my husband was diagnosed in 2009 and I, two years later. My husband is well and I am now in “partial remission.” Not a bad outcome. Immunotherapy was not around when we started chemotherapy, and I confess that I’ve been longing to try immunotherapy in the hopes of achieving what appears to be an elusive remission.

I wrote about the advertising for Opdivo (the drug in question) almost two years ago, in an earlier post. I felt irritated by the hyperbolic promise of the language, invoking the amazing powers of your immune system to fight cancer–with the help of the new drug. Patient, heal thyself. The future you’ve dreamed of is now. One ad, a full page in color, featured a couple astride a cool looking motorcycle, poised for a long, adventurous life, against the bright blue background of a perfect sky. I probably envied their recovery.

I don’t remember exactly where in the New York Times, my daily newspaper, the ad appeared, but I’m struck by the fact that this report of the drug’s failure occupies the first page of Business section, rather than the Science section, or indeed the News section itself, which recently featured a multi-paged narrative about the miracles performed by immunotherapy drugs.

The Wall Street Journal also reports the trial’s failure as a business calamity. There is no attention to the fate of the patients, the individuals for whom the drug failed. Follow the money. Both articles focus on the drama of financial shock, shaky market shares, and rivalry with other drug companies–future sales figures of the drugs, not the future of the patients.

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In the Times the only mention of the 541 unfortunate humans in the clinical trial was to note that their tumors had not produced enough PD-L1 for the drug to work, as if they had failed the drug instead of the other way around. What did patients know about the trial as they entered it? In her “Living with Cancer” blog, Susan Gubar highlights the scandalous history of drug companies that do not report the outcome of failed trials, thus depriving patients of the opportunity to evaluate their chances.

I kept hoping my oncologist would propose Opdivo for me. Last year, a friend began treatment for lung cancer with my oncologist, on my recommendation. She received standard chemotherapy, as I had. Then immunotherapy. I thought she was lucky to benefit from Opdivo. Both therapies failed. This brilliant, courageous woman was then given 6 months to live; she died within 6 weeks. Where is her story?

My friend was not alone. The gap between the promotion of drugs and the life of patients is just starting to emerge. Here is just one sad outcome.

If I hadn’t already stopped asking for the drug, I would now. How many patients in future drug trials will know what happened to the 541 who came before them before they decide to enter a new trial?

Be careful what you wish for.

All in the Timing

By the time I was making the final revisions to the Breathless manuscript, I had been diagnosed with  lung cancer―“incurable but treatable,” as today’s oncological discourse codes the situation of late staging. In the final pages of the memoir, where I reflect upon the destinies of the characters important to me in the narrative, I account for the deaths from cancer of my ex-husband as well as that of my Paris roommate. I did not, however, reveal my diagnosis. Despite the truth-telling pact of autobiography that I’ve always held to, despite the fact that I wasn’t sure I’d survive to see the book’s publication, I could not bring myself―as a writer–to end the memoir with that revelation.

Naturally, it was not the only omission in the book―I spared the reader many humiliating episodes of my twenties―but this was different. To end the story on my prospective death would have recast the narrative as cautionary tale, since the girl I was smoked on almost every page. I didn’t want to provoke the moralizing logic that stigmatizes lung cancer patients: you smoked, therefore you got cancer. Invariably, anyone I told of my diagnosis would ask: “Did you smoke?” When I said yes, a horrible silence would ensue during which I imagined my interlocutor’s speech bubble saying with unabashed relief: “I’m so glad I didn’t smoke.” What I heard, spoken or not, was “You brought it on yourself.” But lung cancer, I’ve learned, affects a substantial number of people who never smoked (especially women, and including my mother―no one knows why) and some smokers never develop cancer. Nonetheless, both the current stigma and blame for the former smoker is as pervasive as secondhand smoke, and fundraising for research into the disease suffers from this vision of the disease.

No pink ribbons for us. Lung cancer ribbons are white. It’s difficult, if not impossible to imagine a campaign to “beat lung cancer” with the appeal of “the race for the cure,” not to mention all the pink artifacts you can buy to support research. Of course, it’s easier to picture breasts than lungs, and white isn’t much of a color. Except for the color problem, though, I’m not suggesting that one cancer is “better” or “worse” than another (though some surely are in terms of survival statistics). But the disparity in fund raising remains significant, and lung cancer in women now claims more lives than breast cancer.

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Breast cancer can generate the same sense of blame and shame. Miriam Engelberg, in her bitterly hilarious graphic memoir, Cancer Made Me a Shallower Person, shows the response acquaintances typically give when they realize―from her chemo baldness―that the artist  has cancer. When she explains that she has breast cancer, the interlocutor typically asks: “How awful, did you have a family history?” And Engelberg imagines a cancer-free person reassuring another cancer-free friend: “So don’t worry―you and I are perfectly safe.” Naturally, we all want to know what caused our cancer, even though in many cases the origin remains a mystery: what could I have done? In one panel Engelberg depicts a support group member saying, “and I think I caused this by eating too much cheese.” Engelberg died in 2006 the year her memoir was published.

Now that Breathless is launched, and its survival rate in book land more or less clear, I’ve wanted to come clean. To that end I’ve created a new project on the website, “My Metastatic Life,” and I will post about the experience of living with cancer from time to time. It makes me anxious to expose myself this way, but it’s important to acknowledge the place of cancer in the world, since statistics suggest that a staggering number of people have or will be having cancer, and to realize that cancer patients are not, in that sense, alone.

October was breast cancer awareness month. November is our turn to clamor for attention and support. Look for those white ribbons.