S2:E26: Shut up and listen
Thursday, March 25, 2021
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Episode description: How can we make space for concerns about the vaccine and grapple with a difficult history? Dr. Joyce Sanchez says that the most important thing she can do when addressing vaccine hesitancy is to shut up and listen. Trigger warning: mentions of non-consensual clinical trials and experimentation.
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This is Shelter in Place, a podcast about coming together in a world that pulls us apart. From Oakland California to Hamilton Massachusetts, I’m Laura Joyce Davis.
Joyce: The most important thing to do after I asked them what their concerns are is to shut up and listen. If I don't stop talking, then I'm not hearing their story. I want them to feel heard. And yeah, sometimes no matter how much you listen, you won't agree, but that's okay. At least we've had that conversation that opens up trust.
Laura: Last week in a Fox News interview, former president Donald Trump urged all Americans to get the coronavirus vaccine, which he and his wife Melania received privately in January.
In the interview, Trump said, "It is a great vaccine. It is a safe vaccine and it is something that works. I would recommend it to a lot of people that don't want to get it and a lot of those people voted for me, frankly. It works incredibly well. 95%, maybe even more than that...and it is really saving our country and it is saving frankly the world."
However you feel about Trump, this is a defining moment. In January of this year, a Texas A&M Survey found that those most likely to refuse the vaccine were women, Black populations, and those with conservative leanings. Trump’s endorsement of the vaccine probably won’t convince all of the skeptics, but it may help those who have looked to him for guidance as they consider the increasing data supporting the vaccine’s safety and efficacy.
Our team here at Shelter in Place began talking about vaccine hesitancy back in December, when the FDA had just approved the Pfizer vaccine for emergency use. We were excited about the vaccine--but we also had questions. Beneath those questions were deeper ones: how do we get our information? Who can we trust? In this episode, we look at the history behind that hesitancy.
Sarai: Hi, my name is Sarai Waters. I am an apprentice with the Shelter in Place podcast. I'm here today to talk about vaccine hesitancy.
Laura: In early March, Sarai became the first to graduate from our podcast apprenticeship program. That same week Sarai shared her story of being homeless on the streets of L.A. and San Francisco in an episode of Shelter in Place. Recently we spoke with Sarai again, this time about vaccines.
Sarai: I think about the necessity of it. Like a TB shot. There are a lot of hazards when going into homeless shelters, so in situations like that, it's definitely a benefit to get a vaccine. Vaccines that have stood the test of time I'm all right with. But when it comes to new vaccines or things that I've heard bad stories about, I'm very hesitant.
Laura: The history Sarai alluded to the history of vaccines and people of color is one that illustrates the good and evil humanity is capable of whether we're pro or anti-vaccine. Every single one of us has benefited from that history. Some of us have been harmed by it.
We’ve often referred to this year as our pandemic Odyssey, because the pandemic has launched my family and me on an uncertain journey both geographically and vocationally. Like Odysseus, we’ve been away from home a lot longer than we thought we would be.
We’ve had fun with these literary ties, but today especially, when we’re talking about the difficult history of vaccines and people of color, it’s helpful to have another story to guide us. In both of these stories, the heroes aren’t always obvious and the ethics are sometimes sketchy. Odysseus--and our forefathers in medicine--make some questionable judgment calls. Sometimes people died because of it. There are a few bloody scenes that end badly. What got me through those chapters was keeping the bigger story in mind--a story of trying to get back to safety, but sometimes losing our sense of direction along the way.
Sarai: I know a lot of Black people who have not been treated well by the medical field, people who have been neglected by their doctors because they didn't have insurance or they didn't feel that their concerns were valid. And that raises big concerns for me, because this is supposed to be healthcare, but you're not caring for the people.
Laura: Over the past year, experts have tried to understand why Black and brown populations have been hit so hard by COVID-19. Among the answers to that question are that many of them are frontline essential workers who are regularly exposed to the virus. In some of these communities it’s not unusual for several generations of family to live together, making social distancing or isolating next to impossible. Others have jobs that don’t provide healthcare, so they’re less likely to go to the doctor. For those without Internet access, it’s hard to stay up on the latest news, or sign up online for COVID tests and vaccine appointments. But Black and brown populations are also among those most hesitant to get the vaccine.
Even though Black Americans are 1.5x more likely to die of COVID than white Americans, only 5.4% of vaccinated Americans are Black, while 60.4% of those vaccinated are white.
Garnet: For people of color, there is a real and valid reason that they fear any kind of new treatments or interventions, because there's such a long and disgusting history in the United States of our government using the bodies of people of color as experiments.
Laura: That was Garnet Henderson, a medical journalist and professional dancer who participated in the Pfizer vaccine trial. We spoke with Garnet in our first installment of this series, in an episode called “Trials and Tribulations, Garnet walked us through what it was like to be in a clinical trial to help us better understand that process.
We also spoke with Dr. Joyce Sanchez, an infectious disease specialist at the Medical College of Wisconsin who has spent her life studying and preparing her patients for viruses like COVID-19.
Joyce: There's reason for mistrust. There's definitely communities where there's been historical injustices, so any hesitancy is very valid.
Laura: UNLV’s director for Health Disparities Research Melva Thompson-Robinson says that it’s not that people of color necessarily distrust healthcare, but that the healthcare industry hasn’t presented itself to be trustworthy. Here’s Joyce again.
Joyce: When you have historical memories of injustice with being treated inhumanely by withholding treatment in Tuskegee, Alabama, or given the lack of access to care in many communities of color where there's a disproportionate number of infections and deaths due to COVID, that creates a barrier to trust between those communities and some of the larger healthcare systems.
Laura: Joyce mentioned the Tuskegee experiments, a study conducted between 1932 and 1972 where in the name of research, the U.S. Public Health Service and the CDC let hundreds of Black men go untreated for syphilis even though at some point in that process, doctors knew that penicillin could cure the disease. The men who participated in the study were told that they were receiving free healthcare from the federal government that included treatment for their disease, but instead doctors watched many of these men die slowly and painfully; some of them passed the disease onto their wives and children.
Unfortunately this was not an isolated incident. The 19th-century physician J. Marion Sims, often referred to as the father of gynecology, did all of his work on female slaves, and didn’t administer anesthesia during procedures because he believed that Black women didn’t experience pain.
These are hard stories to stomach. It’s hard to even imagine now what those doctors must have told themselves to justify their cruelty. But there are also more complicated stories, advances in research that we’re all still benefiting from today.
Henrietta Lacks was a Black woman who died in 1951, but whose cells doctors have often called “immortal” because they didn’t die off like regular human cells. Henrietta’s cells have contributed to some of the most important advances in medicine, including the polio vaccine, chemotherapy, cloning, gene mapping, in vitro fertilization, and developing drugs to treat herpes, leukemia, influenza, hemophilia, and Parkinson’s disease.
The only problem is that Henrietta’s cells were taken from her cervix without her consent; consent wasn’t legally required at the time she was being treated. Thirty years later her children would unknowingly be used in further research--something they would only learn when their medical records were published.
Even in our biggest vaccination success stories, there’s a checkered history. When European settlers brought smallpox to the Americas, it devastated Native populations. In the early 1700s, when a slave named Onesimus told Cotton Mather about the West African practice of taking infectious material, like pus, and introducing it through an incision into the skin of those who had not yet been infected, the first U.S. medical trials to inoculate smallpox were performed . . . on Black slaves without their consent.
Eventually, as Joyce said, a vaccine was discovered that wiped out the disease completely, but even in this incredible moment of medical history, there’s the very important footnote that it was Black slaves who first made that moment possible.
Thankfully, the medical community has taken some steps to begin to right these wrongs. In response to the Tuskegee study, the 1974 National Research Act made informed consent mandatory for clinical and behavioral studies in the United States.
After writing a book about Henrietta Lacks and realizing just how indebted all of us are to her “immortal” cells, Rebecca Skloot founded the Henrietta Lacks foundation to provide aid for families who had been impacted by medical research.
Joyce said that the holy grail of infectious disease is what happened with smallpox: a disease that once wiped out whole populations is no longer a threat to any of us.
Joyce: Smallpox scoured our early history for a long time. And once we had a safe and effective vaccine against smallpox it's since been eradicated. That is where we would like to get with all vaccine preventable diseases.
She hopes we can get there with COVID-19, and she’s convinced that vaccination is the best way to do that--but she also understands that given the difficult history of vaccines, the choice isn’t so simple for everyone.
In her interview with Keyonna Sommers, Melva Thompson-Robinson says, “Health care has never been a trustful institution for people of color . . . we’re building on centuries of harms that have been passed down generation to generation.” Sarai shared this perspective.
Sarai: As it stands right now, there are a lot of other things that play when it comes to this vaccine. I know a lot of people that do not trust it at all. And honestly, I don't think there's anything that they can do at this particular time to get them to trust them.
Laura: Melva says that resistance to the vaccine isn’t just about the abuses that happened in the distant past. It’s about the ripple effects that continued throughout history. She tells the story of her mother growing up in the Jim Crow South, where she’d have to use a different entrance than white people and then wait until all of the white patients had been treated before she could be seen--if she got seen at all. These practices led to a culture where people of color were used to not being prioritized, and so they’d only go to the doctor in an emergency.
When we talk about systemic racism, this is what we mean. It’s not just about people of color being treated unethically or inhumanely in a few isolated incidents. It’s about the culture that made those events acceptable at the time, that has trickled down to us today. Especially if the system has mostly been working for us, we may not immediately recognize these practices and patterns as systemic racism because we’re so used to them being a regular part of daily life. We need to be able to connect the dots through history that extend to today.
Reading about J. Marion Sims and his beliefs that Black women didn’t experience pain made my stomach churn. But that myth didn’t die with him.
In a 2016 study that included hundreds of white medical students and residents, half of them ascribed to myths about racial differences related to pain — myths like the nerve endings of black people being less sensitive than those of white people. Those who believed in those myths were more likely to undertreat their Black patients and underestimate their pain.
In 2012, an analysis of 20 years of published research in the United States found that African American patients reporting pain were 22 percent less likely than white patients to get pain medication from their doctors. Dr. Salima H. Meghani is an associate professor at the UPenn School of Nursing and was the lead author of that 2012 analysis. In a 2019 story by the Washington Post, Salima said, “a lot of work in the social sciences has shown that you’re more empathetic to people in your in-group than your out-group. That’s a very well-studied phenomenon.”
Sarai: I've only had one black doctor in my life. That was literally the only experience that I've had with a black doctor. I'd like to see some doctors that look like me. Not that white doctors don't care. It's just, there's a level of comfort when there's representation. That you don't get from a predominantly white doctor's office, because of that lack of representation there's a lot of distrust.
Joyce: There's so much value in having representation. If you don't see doctors, nurses, medical professionals who look like you, who are in your community, who speak your language if it's not English, it's going to be a lot harder to trust and to break down those barriers. I think it's really incumbent upon us as a medical community to regain that trust and to really integrate into the communities and partner and have leadership that is representative of people of color. Lots of institutions--including where I am now--are really increasing their efforts to have representation in leadership, the medical students, the ancillary services, so that when people come in, they feel like they can be comfortable and vulnerable. We need to do a better job of that.
Laura: Joyce has experienced firsthand how powerful it can be to connect on both a linguistic and cultural level with her patients.
Joyce: When I see on my schedule that I have a patient who is a Spanish speaker when I come into the room or open up the video visit and I greet them in Spanish, it's like a light turns on. I just see some relief in their faces and not just them, but family members who may be there. It's just really wonderful. And I especially love it if I have a patient from Puerto Rico--that's my family's heritage. It's really fun to connect with them on a level that sets aside medicine.
Laura: These kinds of conversations between doctors and patients are crucial when it comes to conversations about vaccines--but perhaps even more importantly, they begin the work of repairing the damages of the past.
Joyce: I really believe that people are very well-intentioned and everyone is on a quest for truth, right? What is truth? And unfortunately in medicine and in science, that truth can be messy a lot of the time, particularly as we're learning about a novel. Virus. When you have historical memories of injustice so any hesitancy is very valid.
Sarai: You can't just jump in. You gotta do your research. You really have to do your homework
Give this vaccine about a year minimum. And then I feel like the black community will be more open to getting a vaccine.
Joyce: I've had conversations with both people who are medical and non-medical, Some just wanted to see more safety data out there. that's very reasonable it did take some time but more and more healthcare professionals are opting to get the vaccine now that we have more and more data out there.
The topic of vaccine hesitancy and mistrust of healthcare systems. They're not new things. We've dealt with this before the pandemic I encountered in nearly every day in my infectious disease and the travel medicine practices. if I weren't seeing the data every day. I might have some questions and that's very valid.
Laura: The difference, Joyce says, is that this time around, the consequences of that mistrust can be fatal.
Joyce: If this was just a common cold, even if it spread across the globe, most of us recover from the common cold. There's not significant deaths related to it. It doesn't overburden our healthcare system and intensive care units.
Laura: Even when we compare COVID to the flu, the difference is striking; a recent study in France showed that COVID was more than 3x more likely to kill patients than the flu. It’s worth noting that the study took into account the 2018-2019 flu season, one of France’s worst in recent years.
According to the World Health Organization, when it comes to public health, only clean water has saved more lives than vaccines.
Joyce: You have to understand what the purpose of vaccines are. They're not to inconvenience you. They're not to give you discomfort. It's to protect you as an individual from disease.
When we think about evaluating safety, clinical trials today are the most vigorous that we've seen in the history of medicine. We actually have a lot of data now. When we think about the globe, we're talking about more than a hundred million people who have received at least one dose of these vaccines. If we have a vaccine that can prevent disease, why wouldn't you want to go for it if it's safe, if it's effective? Even if it's not a hundred percent effective--which I can't think of a vaccine that is a hundred percent effective at completely eradicating disease. But even if it's not a hundred percent effective, they are able to reduce disease severity. Even the reduction of disease severity can have really meaningful impacts in health when you talk about population level.
And then (it) also limits the spread of infectious diseases. So for example polio in the 20th century was so devastating to kids every single summer, causing significant problems in paralysis, and kids needing to be on iron lungs, and needing assistance in walking. Even when there was a small degree of vaccination, that was able to limit the spread so that it could protect other kids. If we can protect people starting at the individual level, and then applying that to the population level without doing harm, I see no reason why that can't be an integral part--and shouldn't be an integral part--in humanity as it is today.
Laura: Joyce’s example of polio brings up an interesting point: if enough of us get vaccinated, then we’ll protect even the people who haven’t yet gotten the vaccine.
This is the idea of herd immunity, a phrase we’ve heard a lot in the pandemic, but that even now is poorly understood. I’ll confess that even though I’ve read a lot about herd immunity, and heard Joyce talk about it, I didn’t really feel like I understood it until I read a story in Forbes recently by Ethan Seigal, who compared COVID-19 to a predator . . . a lion.
He writes, “The isolated and injured zebra stands little chance against a lion or a pack of lions; an immunocompromised individual similarly stands little chance against getting infected — and having that infection be potentially lethal — by a deadly disease.”
But Ethan says take that same injured zebra and put it in the middle of a pack of strong zebras, and even the wounded zebra stands a good chance. In other words, herd immunity is when a substantial amount of that population is already immune, and therefore won’t pass along the disease to those who aren’t yet immune.
Of course getting the virus can also make you immune--or at least inoculate you. But there’s an important distinction between inoculation and vaccination. With inoculation, you get the virus and hope you survive and escape long-term effects on your health. With the current mRNA COVID-19 vaccines, your body receives a messenger that isn’t actually the virus--but it triggers the immune system to respond as if it is, building up antibodies, but not actually exposing your body to the virus itself. The World Health Organization discourages against waiting for disease exposure, because your chances of dying from the virus itself are exponentially greater than your chances of having side effects from the vaccine. When medical professionals talk about herd immunity, they are always talking about the kind that comes from vaccination.
When my family and I left our home in California and set out on our pandemic Odyssey, we were a little wounded. One of the reasons we came to Massachusetts was to surround ourselves with the stronger herd of extended family. In the shelter of that protection, we’ve stayed longer than we originally anticipated.
In Homer’s Odyssey, Odysseus makes a few longer-than-anticipated stops, too. One of them is Circe’s island, where the bewitching Circe turns Odysseus’s crew into pigs. It might be a stretch to compare getting COVID-19 to being turned into swine, but the thing that protects Odysseus from that fate looks an awful lot like a vaccine.
The god Hermes gives Odysseus a magical herb called Moly, which makes Odysseus immune to Circe’s magic and even allows him to save his men. While the COVID vaccine hasn’t been gifted to us by the messenger god, the messenger RNA vaccine does function in a similar way.
Our biggest problem right now is that we don’t yet have enough people who trust that herb. That vaccine. To reach herd immunity, our population needs enough of us to get vaccinated to protect those who don’t end up getting the vaccine. Joyce recommends vaccines as part of her daily job. But she says that the most important thing to her is that her patients feel heard--even if that means they ultimately decide not to get vaccinated.
Joyce: My general approach whenever I have a patient with something that may be a barrier to their care.Is to do whatever possible to ally with the person in front of me, ask what their concerns are. But most important thing to do after I asked them what their concerns are, is to shut up and listen. If I don't stop talking, if I don't listen, then I'm not hearing their story. When I listen, I can really understand where they're coming fromwhen I listen, they are treated with the same level of respect that I would want for myself. And when I listened, I showed that I generally care about their concerns
when I listen, and give them space to tell me what's going on in their life and what their concerns are what their complaints are, what, The issues are that are going on at home or, historically, then we can have a conversation what are the common goals that we have in regards to their health? And then answer any of the questions they have to the best of my ability and come up with a plan jointly with them. Sometimes no matter how much you listen, you won't agree, but that's okay. That's humanity. That's not just in medicine, that's not just in regards to vaccines, it's their life. And I want them to understand that I care for them and I want them to feel heard. . but at least we've had that conversation that opens up trust.
Laura: This is why we began this series--why since day one of the pandemic we’ve been putting out episodes to encourage both personal and community transformation. Change is hard--especially when it happens fast--and so we’ve tried to provide stories and guides along the way that can help us get our bearings.
When we were working on this episode, one of our assistant producers Michele O’Brien said that
When it comes to conversations about racism, depending on where we’re coming from and who we are, some of us need to make space, and some of us need to take space.
If you’re white, or if this history is new to you, I want to invite you to make space for the stories all around you--from people in your life who have been hurt by them, but also space for all of us to lament.
If you’re a person of color, my invitation for you is a different one. Perhaps the best thing you can do right now is to take space to care for yourself right now, to grieve what has been lost.
Learning to trust--in science, medicine, history, or even in our own lives--is a process of weighing what we’ve experienced in the past against our willingness to find a differending. When I look at the history of vaccinations in this country and see so much pain, it helps me to look to the people today who are working hard to heal those wounds. Joyce isn’t alone in wanting to be a part of that effort. I’ve been inspired lately by the work that the Black community is doing to address vaccine hesitancy.
The National Medical Association, a coalition of Black medical professionals, decided to do their own investigation into the vaccine data to decide for themselves whether or not they agreed with the FDA. After sifting through all of the evidence, they gave the Pfizer and Moderna vaccines their own stamp of approval.
My favorite example of the Black community addressing vaccine hesitancy is a video series called “The Conversation: Between Us, About Us.” W. Kamau Bell kicks off the series with a hilarious 5-minute video where he somehow manages to be funny and incredibly informative as he asks Black doctors and scientists about the vaccine. You can find that at greaterthancovid.org, and also on our website, shelterinplacepodcast.info, where we’ll include links to all of the research and resources we’ve mentioned.
We’re going to end this episode with an excerpt of a letter written by the Black Coalition Against COVID-19, a collaboration between Black medical professionals from the National Medical Association, the National Black Nurses Association, the National Urban League, and all four Historically Black medical schools. But I’m not going to read it to you. Sarai is.
Dear Black America,
We love you.
We affirm that Black Lives Matter. And as Black health professionals, we have a higher calling to stand
for racial justice and to fight for health equity.
In the spirit of unconditional love for every single Black American, we have locked arms in an initiative to
place the health and safety of our community at the heart of the national conversation about COVID-19.
Respect for our Black bodies and our Black lives must be a core value for those who are working to find
the vaccine for this virus that has already taken so many of our loved ones.
Our colleagues across healthcare know that we are urging our community to take safe and effective
vaccines once available. However, for this to be successful, they must do more to earn your trust—now
and in the future.
We are on the front lines in care delivery, and in key decision-making roles— from the lab to the clinic to
the virtual boardroom. We urge you to hold us accountable. We also ask for your help in continuing to
protect the health of our community, especially now that the pandemic is escalating at crisis levels across
the country.
With the holidays around the corner, we want nothing more than to break bread with our loved ones. But
tradition cannot stand in the way of our health. We plead with you to wear your masks, continue social
distancing, hand washing, and avoiding indoor events until vaccines are widely available.
We also ask you to join us in participating in clinical trials and taking a vaccine once it’s proven safe and
effective. We know that our collective role in helping to create a vaccine that works for Black people—and
that we trust—has an impact on our very survival.
We commit to keeping you updated. Please visit blackcoalitionagainstcovid.org/loveletter to learn
more about the work we are doing to keep our beloved community safe.
We will keep you in our hearts while we work to create a world that is healthier and more just than the one
we know today.
Love,
America’s Black Doctors and Nurses
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Shelter in Place is part of the Hurrdat Media network. The Shelter in Place music was created by Chase Horsman at Reaktor Productions. Additional music and sound effects for this episode come from Storyblocks. Isobel Obrecht was our associate producer for this episode, Michele O’Brien was our assistant producer, and Alana Herlands was our assistant audio editor. Nate Davis is our creative director, Sarah Edgell is our design director, and our amazing season 2 apprentices are Winnie Shi, Alana Herlands, Eve Bishop, Isobel Obrecht, Melissa Lent, Clara Smith, Elen Tekle, Michele O’Brien, Quan Zhang, Samantha Skinner, and Shweta Watwe.