You know that feeling, when they do a generation-later reboot of your favorite TV show or your favorite directors take over a franchise you were pretty "meh" about? That feeling of hope and excitement and also the dread of, please, Lord, do not screw this one up? That's how I feel about Joe Biden and the ambitious, well-intentioned -- and still needs a lot of work -- cancer moonshot initiative.
I think you will find my credentials as a Stage 4 cancer veteran who's alive today thanks to immunotherapy are in order. You'll also see that my Leslie Knope-level Joe Biden worship also checks out. So when the vice president — who has been stunningly open in his experience of grief for his son Beau, who died one year ago of brain cancer — announced he was directing his energies toward leading a new $1 billion "moonshot" initiative to "to eliminate cancer as we know it," my main response was, go get it, Joe. After all, despite decades of research and billions of dollars spent on many of the most common forms of cancer, the needle has not moved significantly enough.
Promising research — especially for rarer cancers — has often stalled at the gate, and drug development has languished. People of color are all but ignored in cancer research trials. Meanwhile, as Peggy Orenstein noted back in 2013, "Only an estimated .5 percent of all National Cancer Institute grants since 1972 focus on metastasis" — meaning that frequently, the patients in most dire need of treatments are still being wildly underserved. You want to change things? Great, where do I sign up?
But as Biden been moving forward with his task force, it's been harder to feel confident that this is a team that's doing its best to speak to the needs and concerns of those of us most invested in the endeavor — the people directly affected by cancer.
On Wednesday, Biden appeared on "Good Morning America" to discuss the project and its progress, saying, "I've gone around the country. I've met now with... almost 300 oncologists." (Last month, he also swung by the Vatican to discuss stem cell research.) And he took on the significant problems of funding and red tape, vowing "I've committed, and I promise before we leave we will mow down any of the impediments that exist bureaucratically in the federal government that slow up the process" of furthering their work. That's an incredible undertaking, and one doctors and scientists desperately need — it's hard to go about the crucial work of investigating treatments and working directly with patients when you have to devote an excessive amount of time to writing grant proposals.
On Wednesday, the veep also announced a new Cancer Moonshot crowdsourcing platform on Medium, for sharing news and personal stories. And in his own essay on Medium, National Cancer Institute acting director Douglas Lowy discussed both the Moonshot's Blue Ribbon Panel and its "wide net" Cancer Research Ideas site for index exchanging knowledge and information.
Yet the project still seems to be searching for its focus and its voice. During the "Good Morning America" segment, interviewer Robin Roberts — herself a cancer survivor — added a personal note, telling Biden, "I don’t like when people say somebody 'lost' their battle to cancer. [Beau] didn’t lose. I just want to say to you, your son’s journey was no less valiant though the outcome wasn’t what many had prayed for." Biden is under no obligation to agree with Roberts, but I wish he'd considered that possibility before publishing his own essay on Medium, in which he shared the story of how "I spoke with Wendy from Bay Village, Ohio, who’s currently battling breast cancer." The White House also shared the audio of his interview with her, describing her likewise as a woman "battling breast cancer." Many, many of us who've experienced cancer — as well as many who work in cancer treatment — reject that outdated "battle" metaphor. Would it have been so very hard to come up with a different word, instead that cliché?
Biden also wrote, "Even before the President officially tasked me with heading up a new national mission to double the rate of progress toward a cure for cancer, something remarkable had already begun to happen. Americans from all around the country, from all walks of life, had begun, simply, to tell me how this horrible disease has touched their lives."
It honestly baffles me how someone who has spoken now to countless doctors and patients can use this misleading language on such a critical platform. This is the kind of vague and inaccurate terminology one might expect from a half-assed celebrity magazine story about a movie star doing a fun run for "the cure," but it is so not what you want to read from the guy entrusted with making a serious impact.
So here you go, Joe. Cancer is not "this disease," like it's polio or measles. That's Cancer Basics 101. There are over one hundred different kinds of cancer, and they behave differently from each other, and from person to person. That's why, for instance, when an interviewer asked me recently why I hadn't "needed chemo," I explained that my late stage melanoma would likely not have responded to it. The insidious nature of cancer means that breakthroughs are rarely across the board successes, and that a protocol that works well on one form may not do much for another. That's also why, in case you hadn't guessed where we're going with this, there isn't "a cure" and there likely never will be. Cancer research will evolve via expanding the variety of options, and moving treatment away from ineffective cookie cutter models to personalized medicine. I am considered cancer free today thanks to two effective drugs. But they're not "the cure" for cancer.
Mr. Vice President, must know this on some level. You did write, "The goals of this effort — this 'Moonshot' — cannot be achieved by one person, one organization, one discipline, or even one collective approach." Why, then, did you get so much else wrong?
And while this part isn't about science, I do wonder if your no-doubt heartfelt statement that "The truth is that this disease spares no one. It doesn’t care about how much money you make, what your profession is, or how many loved ones surround you" might have been more fully informed if you'd ever spent time on any of the crowdfunding pages of people struggling to pay their bills and pay for treatment. "This disease," as you mistakenly refer to it, may spare no one, but cancer sure as hell has a big advantage when it strikes the underpaid and the uninsured. And if you say cancer is "truly a bipartisan issue," can you see what you can do about getting conservatives to back off Planned Parenthood?
Like our vice president, I have spent the past few years grieving for people I loved who cancer took away. I am angry about that and I want better odds for more people. I have also experienced firsthand the dramatic possibilities of cutting edge science, and am full of hope that we are on the brink of a revolutionary era. But I want those leading the charge to get the story right, for the sake of all us -- all of us who are not battling, who do not fall under the umbrella of a single disease, and will not survive thanks to any single "cure."