“Are you excited about the new COVID vaccines?” I asked a young cashier at the pharmacy the other day. As a public health writer, I’ve been asking this question a lot lately, trying to figure out how to instill trust in these new warp speed wonders.
She shook her head, threw me a look that spoke volumes. Side eye, aimed at me and science. That’s been happening lately, too. And as odd as it may sound, I get it.
I came stumbling into science through a side door. It was never my subject in school — in fact, all through my rural Washington school years, science felt intimidating, even unwelcoming. I associated it with the sour smell of formaldehyde and that one mean teacher. Molecular biology made my budding writer-brain ache; the sight of blood made me faint. It was clear I wasn’t built for medicine or research, though later, as a health journalist, I loved plumbing the strange and wonderful things our bodies were capable of — growing horns; tumors with teeth; extra fingers and toes. It’s just when I’d turn to a journal or paper to explain it, my eyes would glaze over. Pluripotency? Dysregulation of the sonic hedgehog–patched–Gli pathway? Hyperkeratotic dense protrusion with epithelial cornification?
As we say back home, Huh?
It was a half-century before science fully got my attention. It came in the form of a biopsy. Despite the regular mammograms, a lack of family history and my “young age,” I’d somehow developed cancer and needed to go through some pretty awful stuff to get rid of it.
— Fred Hutch science writer Diane Mapes
When somebody in a white coat tells you something you don’t want to hear, it’s easy to decide they’re full of beans — especially when nothing seems amiss.
I’d never felt healthier in my life than the day I was diagnosed with cancer (10 years ago this month). I had no fatigue, no lingering cough, no unexplained weight loss, not even a dang lump. All I had was a tiny tuck on one breast. But the doctors said they both had to go. They said I was stage 3 and needed chemo and radiation and then would have to take hormone-squelching drugs for the next 10 years.
Getting that news was like having a piano fall out of the sky and land on my head. You may recognize the feeling from last March when a concert grand called SARS-CoV-2 landed on all of ours. Part of me desperately wanted to ignore the surgeon, the scans, the histopathology, those microscopic images of my suffering tissue. That part wanted to run off to Mexico and bury my feet — and my head — in the sand.
Instead, I talked to friends and family and to other women who’d been down this road. Then I took a deep breath and trusted the science, even though I only understood a fraction of it. And I soon discovered cancer treatment was much less awful than I’d anticipated. Top-notch anti-emetics meant zero nausea; problematic low white cell counts were boosted with a belly shot of Neulasta (and no, not the kind you did in college). My regular jogs, which I thought of as therapy, actually were, according to the epidemiological studies I was now reading on the reg.
I was swayed. Science was something I needed to stay alive.
Eventually, I came to work for Fred Hutchinson Cancer Research Center so I could better understand my disease and help others understand theirs. Why was I diagnosed with cancer? Why is anyone? What’s taking so long to beat this? Can we truly prevent it?
News flash: Cancer is much more complicated than you could ever imagine — ditto for diseases driven by viruses. That’s why there are so few cancer vaccines, although the big one we have for HPV has practically eliminated cervical and other cancer types in Australia where its uptake is high.
That’s also why there’s no vaccine for the far more problematic HIV, though there have been huge strides in prevention and treatment.
As for “cancer cures,” they’re starting to materialize thanks to gene therapy, immunotherapy and treatments that target the mutations and genetic “misspellings” that lead to disease. Whole genome sequencing can now be done in a fraction of the time — and at a fraction of the cost — unlocking crucial information to better inform treatment.
We are getting there. But science is about knowing and understanding. It’s about gathering evidence. So, yes, it is slow. Trials for treatments or protocols or vaccines can take years. And rigor reigns. That’s why scientists’ papers and talking points often come with qualifiers; their aim is to give you 100% accurate information and nothing more. To the public, though, qualifiers can sound like waffling or uncertainty. Especially in a time when so many people are so certain about so much. Confused by studies and statistics? Check out our ‘Spinning Science’ series.
After seven years among the scientists, much has sunk in and, admittedly, much has slid off. One thing I have learned is that scientists may be intimidating and at times incomprehensible, but they’re also just people. Some are celebrities (paging 'Emperor' author Siddhartha Mukherjee); others can barely make eye contact. They may be a little reserved, but they’re not evil.
The last scientist I interviewed was much more keen on getting kale chips into people than microchips. And yes, some do want to track you, but it’s usually with an accelerometer for an epidemiological study on physical activity. The researchers I work with are passionate, devoted, brilliant and generous: They’re dedicating their lives to saving us saps. And they do amazingly cool things like develop cancer vaccines and track deadly pathogens and occasionally, I don’t know, send mice to space.
And I was never more grateful to be surrounded by brainiacs than when this virus hit.
“Are you getting vaccinated soon?” I asked the checker as he rang up my groceries. “You’re an essential worker so you should be eligible.”
“No way,” he told me. “I saw a video on YouTube where a woman got the vaccine and a half hour later developed cerebral palsy.”
“Do you mean Bell’s palsy?” I said, trying not to sound too pushy or patronizing. “I heard about that. It was a temporary side effect and it may not have even been associated with the vaccine. People just get that sometimes.”
But he looked unconvinced. My neighborhood UPS driver had lots of questions, too.
“I’m not getting it, not yet anyway,” he said when I asked his plan. “Have they even done studies so people of color know it’s OK? I don’t even know where the research was done. And it was done so fast. How could it be that effective if it was done so fast?”
I told him a lot of the research had been done at Fred Hutch here in Seattle, about two miles from where we stood. And that the researchers had spent a ton of time and effort to make sure underserved populations, particularly people of color who’ve been hardest hit by COVID-19, were enrolled in the vaccine clinical trials. And that people of color like coronavirus researcher Dr. Kizzmekia Corbett helped develop these vaccines.
As for how was it done so fast? Science, that’s how! The whole infrastructure was already built, thanks to decades of clinical trials on HIV and other viruses. We’ve all been investing in science for decades through our tax dollars and the National Institutes of Health. We just we don’t always hear about it. Or maybe understand it.
Coronaviruses specifically have been under study for over 50 years (that's not a typo). That’s part of the reason scientists were able to design the vaccines so quickly. And the mRNA vaccines — like Moderna’s and Pfizer’s — are new, yes, but the technology has been under study for a long time. Scientists worldwide have been working to outsmart our sneaky cellular adversaries for decades, so we can all get on with the important business of life, like arguing politics with our family. Meet the Hutch scientists working to crack the coronavirus.
Well, I told him a lot of that in my head on my way home. He was off delivering packages. You can’t bludgeon people with science — you’ll just get more side eye.
Sometimes, of course, it’s earned. Many African Americans and other people of color have a deep mistrust of health care and medical research due to past or present medical trauma, bias and abuse. Learn more about COVID-19 vaccine trial outreach to communities of color.
Others, like my grocery guy, are victims of misinformation or disinformation. They dismiss science because they’ve been duped by a “trusted” news source or fallen down some online conspiracy theory rabbit hole, courtesy of the well-funded anti-science industrial complex. Mangled vaccine messages have even hit healthcare workers, some of whom are refusing to bare arms.
My buddy Dr. Parth Shah, one of the Hutch’s public health scientists who battles misinformation, said much of the hesitancy we’re seeing right has been driven by all the mixed messages.
“Consistent messaging builds trust,” he said. “Inconsistent messaging destroys it.”
Shah and his colleagues are trying to open science up to the public, to make it “more accessible, welcoming and understood.” And the pandemic may become a clarion call to repair and bolster public trust in science and scientific institutions. First, we need to get through it.
Another challenge is this particular coronavirus is new. Ditto for the disease it causes. So, scientists and doctors didn’t immediately have all the answers — and our society is not used to that. We’re an instant gratification nation, accustomed to our medical experts delivering the 411 ASAP 24/7 stat. So, when experts couldn’t immediately pony up answers to SARS-CoV-2’s origins; when they couldn’t explain why it’s killed nearly 500,000 people in the U.S. yet caused no symptoms in a third of those infected; when the knowledge evolved and the guidance changed, some folks freaked out.
Insert enraged tweets about masks, lockdowns, lying scientists, etc.
“Science is fluid,” said Dr. Steve Pergam, a Hutch clinical researcher who’s also the director of infection prevention at Seattle Cancer Care Alliance and one of my first scientist friends. “You change your opinion based on new data, but for the rest of the country, it feels like flip-flopping. It’s part of the scientific process to re-evaluate.”
In other words, scientists search and then they re-search. And sometimes new data emerge. Put another way, biology happens. It happened to me when I went from stage 1 to stage 3 following my breast cancer surgery. Yeah, it’s scary when a clinician or an infectious disease expert gives you new intel when you’re still trying to wrap your brain around the old.
But when disease comes calling, you need to roll with it. You need to listen. Cancer cells don’t care that you’re scared. Spike proteins aren’t interested in your feelings.
It’s hard to trust in dark, dissonant moments, like when you’re diagnosed with a deadly disease but you feel like a million bucks. It’s hard to cut through the thicket of science-speak, to allow strangers in scrubs to remove beloved body parts, give you poison, radiate you in a chamber with a 12-inch thick door.
What if they’re wrong? somebody in there inevitably asks.
It’s hard to comply in times like that, times like this — to wear the mask, shutter the business, take the shot, swallow the pill — even when it’s saving your life. Sometimes, you push back and get angry at science, at knowledge itself. I never would have had to have gone through this if I hadn’t had those stupid scans!
It doesn’t make sense, but it happens. I was resentful — even angry — with my surgeons and oncologists for a while, despising them for the things they said. But it didn’t make them wrong.
The scientists aren’t wrong now, either.
Yes, cancer drugs cause side effects; vaccines can have them, too. If you’re worried about allergic reactions or side effects or the technology behind the new vaccines, by all means ask questions. Another thing I’ve learned working at a research institution: Scientists love questions; they live for questions. Ask our scientists your questions in our monthly Science Says virtual events.
For me, asking questions — and getting answers, even confusing, complex ones — has been incredibly empowering. My side door into science has let me learn from the pros: clinical researchers and epidemiologists and geneticists and disease experts of all stripes. It’s helped me understand what brings on cancer and other creepy diseases. It’s been lifesaving and life-changing and has helped to dispel that deep dark fear of the unknown. I don’t pretend to understand all of the molecular biology behind cancer, but I do know there are things I can do to help keep it at bay and that gives me strength. It gives me agency. It makes me feel like I have a hand in my health, even if I slip now and again.
As new variants bear down on us and COVID-19 continues to mutate and become more resistant — different, but not so different from cancer — I’m sticking with science yet again. I’m taking a hand in my health — everybody’s health — by masking up, keeping my distance and yes, when they’re available, getting those shots.
And though I hear from scientists almost daily about how critical it is that we all get jabbed and soon, though I’m sometimes tempted to not just write stories about disease prevention but don a “Science Saves Lives!” sandwich board and walk through the streets of Seattle ringing a bell, I’m trying hard not to get discouraged by the scientific side eye. I'm trying to not grow disheartened by misinformed protesters blocking mass-vaccination sites or by those with vaccine hesitancy. I'm trying not to lose hope by people's lack of faith.
It took me a while to come around to science, too.
As the roll-out continues to ramp up, as additional vaccines are introduced, as people see friends and family rolling up their sleeves and sidestepping infection, I know the distrust will begin to fade. People will find their own side doors into science, people like my yoga teacher.
“Are you happy? Do you feel relieved?” I asked when she told me she'd just received her second shot.
“Over the moon,” she said, rattling off what she'd learned about the vaccines. She knew about the mRNA versions that deliver a viral “mug shot” of the spike protein to the body’s immune system that then disappears, Snapchat-style. She knew about the single-shot version forthcoming from J & J and AstraZeneca’s more traditional approach.
I was so relieved I wanted to hug her, except duh, we’re in a pandemic.
How had she come by all this? Science podcasts, she told me. Reading. And talking with her healthcare providers, all of whom had had their shots. All of whom she trusted.
“You weren’t hesitant at all?” I asked when she told me some of her friends had indeed badmouthed the vaccines and the people who created them.
“Yeah, for a second,” she said. “But I don’t want to get this thing. People are dying. It’s really serious. Getting vaccinated is the only way we’re going to get it under control.”
She’s right. Trust me.
Diane Mapes is a staff writer at Fred Hutchinson Cancer Research Center. She has written extensively about health issues for NBC News, TODAY, CNN, MSN, Seattle Magazine and other publications. A breast cancer survivor, she blogs at doublewhammied.com and tweets @double_whammied. Email her at email@example.com. Just diagnosed and need information and resources? Check out our patient treatment and support page.
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