Science Friday - Covid And Disabilities, Alzheimer’s And Inflammation, Ultrasonic Sound. Sept 10, 2021, Part 1

Episode Date: September 10, 2021

New Policies Emerge In The Wake Of Climate-Connected Disasters This week, people across the United States continued to be reminded of the results of a shifting climate—with people in the Gulf states still recovering from Ida, northeastern states dealing with the aftermath of Hurricane Ida-induced flooding, and western states battling wildfires and smoke. With climate-related disasters as a backdrop, President Biden announced a goal of shifting some 45% of U.S. energy production to solar power by 2050. Kendra Pierre-Louis, senior reporter for the Gimlet-Spotify podcast How to Save A Planet, joins Ira to talk about those stories and more, including new calculations of the importance of minimizing fossil fuel extraction, to a successful sample collection effort on Martian soil.   Is Inflammation In The Brain Causing Alzheimer’s Disease? The brain of a person with Alzheimer’s disease has a few hallmark traits. First, a buildup of plaques made of proteins called amyloid beta. Second, are tangles of another protein, called tau, within individual neurons. A third major indicator is inflammation. While researchers have long thought brain inflammation was a byproduct of the disease itself, there’s a growing hypothesis that it might actually be a driver of the disease’s progression. That would help explain why researchers have found people whose brains are full of tau tangles and amyloid plaques, but with no outward symptoms of Alzheimer’s. Research on animals has supported this theory. But finding the same evidence in human brains is harder. Now, a team of scientists, writing in the journal Nature Medicine, thinks they have it: time-lapsed images of patient brains showing tau tangles and inflammation spreading through the brain in the exact same pattern. Ira talks to Dr. Tharick Pascoal, assistant professor at the University of Pittsburgh and the study’s first author, about this finding, and what it means for future research into Alzheimer’s therapies.   The World According To Sound: Ultrasonics The mating calls of the katydid, a large insect, are ultrasonic, beyond the audible limit of human hearing. What if we could hear them? That’s the focus behind a collaboration between the abstract audio podcast The World According To Sound and scientist Laurel Symes, the assistant director of the Center for Conservation Bioacoustics at Cornell University. In this recording, you’ll hear the sounds of one of her study animals—a group of katydids in a forest in Panama. Bill McQuay, sound engineer and an audio producer at the Cornell Lab of Ornithology, slowed down Symes’ recording so you can hear a whole world of ultrasonic activity open up, from ultrasonic mating calls of katydids to the ultrasonic pings of bats echolocating their next meal. The World According to Sound is a live audio show, online listening series, and miniature podcast that focuses on sound, not story. Producers Chris Hoff and Sam Harnett create intentional, communal listening experiences as a way to “reclaim autonomy in a visually dominated world that is increasingly fracturing our attention.” This katydid recording and more are a part of their next listening series, an immersive listening party where audiences from all over the globe will be invited to experience a world of sound together, beginning in January 2022.   How COVID-19 Reveals Existing Biases Against The Disability Community In early July, I visit Ingrid Tischer at the Berkeley apartment she’s shared with her husband, Ken, for the past 10 years. When I arrive, she’s already sitting outside at the top of a gently sloping ramp that leads up to the door. We’re both vaccinated, but we’re still taking precautions: masks, outdoors, and social distancing. That’s because Ingrid has a severe disability. “I have muscular dystrophy,” she tells me, “which is a neuromuscular disorder that I’ve had my entire life because it’s genetic.” Muscular dystrophy is a progressive muscle wasting disease. It impacts her mobility, including her ability to walk unassisted. Ingrid says she’s most impacted by having a weak respiratory system and uses an oxygen device called a biPap to help her breathe. Earlier in the pandemic, her doctor told her that if she got COVID, it would likely be a death sentence. “I’d never heard my situation put in such stark, certain terms,” she says. Ingrid is in her mid 50s, with graying brown hair and bright blue eyes. She leads fundraising for DREDF, a disability rights and legal advocacy organization. She’s also a writer — she’s written a draft of a novel and has a blog called “Tales From the Crip.” In addition to a brilliant title, the blog is full of her personal reflections about navigating a world in which the needs and feelings of people with disabilities go mostly unseen and ignored. When COVID hit in the spring of 2020, Ingrid was terrified. Because of the risk of infection and smoke from the wildfires that summer, she stopped leaving her house entirely, developed severe anxiety and depression, and began noticing a host of new health issues. Her feet and legs began swelling and breathing became even more difficult than usual. Her doctor worried she might be developing congestive heart failure, but told her to stay home rather than come in for tests and risk infection. It’s a common story. A recent survey by the disability advocacy group #NoBodyIsDisposable found that many disabled people have delayed medical care for over a year due to concerns about COVID-19. Read more at sciencefriday.com.   Subscribe to this podcast. Plus, to stay updated on all things science, sign up for Science Friday's newsletters.

This is Science Friday. I am Ira Flato. Saying patience is wearing thin, President Joe Biden announced his biggest push to get more Americans vaccinated. It's a plan that goes much further than any federal action so far. This is a pandemic of the unvaccinated. And it's caused by the fact that despite America having unprecedented and successful vaccination program, despite the fact that for almost five months, free vaccine, vaccines have been available in 80,000 different locations. We still have nearly 80 million Americans who have failed to get the shot.

He's requiring vaccination for millions of federal employees and contractors, as well as 17 million health workers at facilities that receive federal dollars. But President Biden's plan would also extend into the private workforce. My job as president is to protect all Americans. So tonight, I'm announcing that the Department of Labor is developing an emergency rule to require all employers with 100 or more employees that together employ over 80 million workers to ensure their workforces are fully vaccinated or show a negative test at least once a week. Biden said that many large companies already require vaccines, including

United Airlines, Disney, Tyson Foods, and even Fox News, as he put it. In other news, people across the U.S. continued to be reminded of the results of a shifting climate, with people in the Gulf states still recovering from Ida, Northeastern states dealing with the aftermath of Ida-induced flooding, and Western states battling wildfires and smoke. And with those climate-related disasters as a backdrop, President Biden's other big announcement of the week was the goal of shifting some 45% of U.S. energy production to solar power by 2050. Here to talk about that and other stories from the week in science is Kendra Pierre Lewis. She's senior reporter at Gimlet Spotify's How to Save a Planet Podcast. Welcome back to Science Friday. Thanks so much for having me, Ira.

Let's start with those oil and chemical spills after Hurricane Ida. Where are they? How bad are they? Yeah, so the Coast Guard has received something like 350 reported oil spills after Hurricane Ida. We don't know how big they are yet. We do know that there have been some oil-covered birds that have turned up near Belchoss, Louisiana, and that those spills have been confirmed both by satellite imagery and overland flights. But exactly where these oil spills are coming from and how big they are, they're still sussing it out, unfortunately. Well, there are so many chemical and petro plants in that region. mustn't there be some protocol for this type of disaster? There are protocols for it, and usually what seems to happen is there's a significant hurricane or other storm, and then the standards get elevated, or it turns out that businesses

didn't follow the standards that they were held to. So, like, as you hinted, this isn't the first time that this has happened. There were significant oil spills after Hurricane Ivan in 2004, and one of the oil spills that came out of that one, the Taylor oil spill, is actually still ongoing. It's the longest oil spill in U.S. history. So this shouldn't come as a surprise to anyone then. No, and actually it's a double whammy, right? Both because you have this hurricane becoming a trigger for these kinds of oil spills.

But on the flip side, oil and gas extraction makes the impact of these hurricanes worse. For example, we know in Louisiana that they've lost something like 2,000 square miles of wetlands, and these wetlands act as a buffer when a hurricane comes through. There's a really great article from 2014, I think, called Louisiana loses its boot, and it's all about the fact that the way we think Louisiana is shaped is actually no longer true because it's lost so much of its wetlands. And about a third of that loss can be attributed to oil and gas. Wow. Let's turn to the wildfires in the West.

What's the latest out there? Sure. So nationwide, as of this year, there have been a little bit over 43,000 fires and a little bit over 5 million acres burned. and nationwide our national wildlife preparerless level is at a five, which is the highest level. And, you know, you said the words out west, and it's true. A lot of our attention has been focused on the West, especially in California for good reason. California has a lot of people and the fires have been truly, you know, catastrophic. But it's not just been the West that's been on fire this year.

It's also been the Great Plains. It's also been the Upper Midwest. You know, right now, fires are burning not just in California, but in Minnesota, in Montana, in Washington State. And the thing that is really concerning is like, actually, if you look at the fires year to date, this is not a record-setting year. But the reason it's been somewhat so catastrophic is because so many of these fires have hit where people live. Yeah. Yeah. We hear comments about the sizes of these fires. I always wonder, is that the best way to be thinking about their severity and impact? No, it's actually, you know, you talk to wildfire experts and it kind of grates on them sometimes because a very large fire in a place where nobody lives and nobody is recreating, it's just a fire. And ideally, they'll work and

they'll contain that fire so it doesn't spread to where people live. But in some cases, because so much of the U.S. is a fire-adapted ecosystem, which means fire is supposed to be there intermittently, it might actually be a good thing to have a large fire burn through if it's in the right place and at the right time, if the conditions are correct. But when we sort of just emphasize the size of the fire, it can make us demonize fire, which means that it makes it harder for wildland to do the things that they need to do in the off-season, which has set more fires. Yeah, yeah. Both the hurricane and the fires, as we said, remind us about the changing climate. I know there's a study out in the journal Nature this week looking at the implications of trying

to keep to this one and a half degree Celsius of warming number. Walk us through that if you can. So this 1.5 degree C number kind of began with low, lying island nations. The more familiar number is probably 2 degree C. And they were like, hold on, wait a minute. The Paris Climate Agreement essentially says that nations will work to keep their emissions below 2 degrees Celsius with the hope or the aim of keeping it below 1.5 degree C. And a couple years ago, because of these low-lying island states, they put out a report that discovered that 1.5 degree C was actually more catastrophic than people thought it would be. The difference between 1.5 degree C and 2 degrees C is a difference between an Arctic that has ice midst of the year and an Arctic that's more ice-free. It's the difference between

having coral reefs and mostly not having coral reefs. And in the case of some of these nations, it's the difference between existing and not existing. And so this report found that in order to keep us below 1.5C, that nearly 60% of current oil and fossil methane gas, also known as natural gas, and 90% of coal reserves must stay in the ground by 2050. With all that, leaving the oil in the ground, this week President Biden announced ambitious solar goals, a blueprint from the Energy Department to dramatically scale up solar. And we're talking scale up big time here. Yeah, solar, which is currently now 3% of the country's electricity.

They want it to be 45% of the country's electricity over the next three decades. So by 2050, they want solar to be 45% of the nation's electricity mix. And I'll be honest, when I first saw that number, my instinct was where are they going to get this land from? But the report actually addresses that. And they say that to get to that goal of what require about 0.5% of the land in the lower 48. And that that land required could be met in a number of ways. So one of the cool things or interesting things about solar is you don't have to put it on prime land. You can put it on marginal land.

You can put it on land that's a little bit too wet for a traditional agriculture. or you can put it on land, on brown fields, for example, that can't be used for other things. And so they're saying that by doing it with that approach, you avoid some of these conflicts between higher use values for land and solar. There was one other cool thing that they did mention, though, which was the idea of installing solar on water bodies, which I thought was really interesting. Floating solar. Floating solar.

Yeah, some people already doing that. And of course, you have all these rooftops, right? Mm-hmm. Yeah, and something I've also been looking at is making. mixing solar with agriculture. So you can put it on a farm and harvest underneath the solar panels, or you can put animals to graze underneath the solar panels. And mixing that use in that way allows you to mix ag and solar, and it provides a little bit of extra income for the farmers. And why such an emphasis on solar? I mean, we have other renewables like wind?

Yeah, so I think it's about allocating the money. Wind is already very financially lucrative, and there's already a really big push for wind and for offshore wind. Also, one of the issues with offshore wind that's occurring right now. The permitting is really difficult, and I don't think we've quite figured out the secret sauce to make it such that you can put permitting in place and make it a kind of a plug-in-play process. And I think solar is a little bit further along in that. That makes sense. You've been doing some reporting recently, I know, on the intersection of climate and gender, but it's not the usual who is hit hardest type of discussion, is it? No, it's more looking at the importance of why we need women at the table.

there are all sorts of kind of really interesting data that you can pull, such as the fact that that when a society is more gender equitable, they find that relative to their gross domestic product, relative to their GDP, they have lower emissions. And there are lots of theories as to why that is, but what we find kind of across the board is that negotiations go smoother and that emissions are lower when there's more gender parity. I love that. Finally, moving off the planet, some news about drilling on Mars. Yes, that to me is so cool. We have samples.

We're going to come back with Martian samples of Mars. How did we do that? Perseverance, the cute little rover that looks like Wally to me. Well, didn't it try to drill back and then failed to get up a sample before? Yeah, perseverance failed the first time, but succeeded the second living up to its name. And I think the plan is for it to go to a few more. before sending back, I believe, a total of eight samples. And I'm really excited at the idea of what you can do when we really know what a sample of

Mars is like. And I understand that the real goal is to sort of search for extraterrestrial life. But it's really cool. So we'll have some Mars samples to go with their lunar rocks. And people shouldn't get too excited too quickly because we have no mission yet to go pick up those samples. There. I mean, we talk about them and they're planning for it.

but there's no spaceship out there in space. Going to pick them up tomorrow and bring them back, I guess, is the point I'm making. I mean, come on, baby stats. Okay, I'll take it for this kind of weekend for some good news like that. Thank you, Kendra. Thank you, Ira. Kendra Pierre Lewis is senior reporter at Gimlet Spotify's How to Save a Planet podcast, taking time to talk with us today.

When we come back after our break, new research into inflammation and Alzheimer's. What we still don't know is exactly how these two proteins, amyloid and tau, interact with each other to determine the progression of the disease. Certainly, there is a missing link between the deposition of these proteins and the real development of the disease. Stay with us. This is Science Friday. I'm Ira Plato. The brain of a person with Alzheimer's disease has a few hallmark traits. First, there's a buildup of plaques of proteins called amyloid beta. Second are tangles of another protein called tau within individual neurons. And the third is

inflammation. And while researchers have long thought the inflammation was a byproduct of the disease itself, there's a growing hypothesis that it may be something else, a driver of the disease progression. That would help explain why researchers have found people whose brains are full of tau tangles and amyloid plaques, but with no outward symptoms of disease. Research on animals has supported this theory, but finding the same evidence in human brains, well, that's a lot harder. But now a team of scientists thinks they have it, time-lapsed images of patient brains showing tau tangles and inflammation spreading through the brain in the exact same pattern.

Here to explain is the first author of that research, Dr. Tarek Pasquo. He's an assistant professor of psychiatry and neurology at the University of Pittsburgh. Welcome, Tariq. Thank you very much for inviting, and it's very exciting. We are able to do this research, and we're very excited to be with you here today. Nice to have you. Well, let's begin by reminding us what Alzheimer's does to the brain, at least as far as what most researchers agree right now.

What does the process look like, both inside and out? Yeah, what we know about Alzheimer's. or how I would say what is the most consensual what you know about Alzheimer, is that Alzheimer disease is characterized mostly for the deposition of two pathological proteins in the brain. And the names of these proteins are amyloid and tau. We know already is very well established that this deposition starts more or less 20 years before the cognitive symptoms of the patient. And we know as well that these proteins are somehow associated with,

with the neurodegeneration of the brain, the degeneration of the brain, and this will lead to the cognitive symptoms. This is something that's established, but what we still don't know is exactly how these two proteins, amyloid and tau, interact with each other to determine the progression of the disease, because we know this is very well established as well. We know that there are many patients, or I would say more or less 30% of the elderly, older than 65 years old, have some of these proteins in the brain, but they never develop the neurodegeneration and they never developed the cognitive decline associated with Alzheimer's disease. Certainly, there is a missing link between the deposition of these proteins and the real development of the disease.

And so what your research is showing is that this missing link turns out to be inflammation. And so how does inflammation fit into this picture of Alzheimer's now? In fact, we know that neuroinflammation is somehow associated with Alzheimer's disease for many, many years. There are many evidence from animal models and even humans linking the neuroinflammation with Alzheimer's disease. But it was never very clear how this inflammation plays out between these proteins, the deposition of amyloid and tau protein, and the development of the cognition. The most accepted understanding of the disease suggests that the deposition of amyloid and tau protein, are the two main upstream events lead to the progression of the disease.

What you are proposing is that neuroinflammation is, in fact, involved in the development of disease, involving the first step of the disease. What you are proposing is that individuals that have this deposition of amyloid protein in the brain, but also have the presence of inflammation in the brain, are the ones that are going to have the development or the progression of tal pathology? That's the protein that we know that's more closely related to the brain. the symptoms. And these individuals with the interaction between the amyloidosis in the brain and the inflammation in the brain, they are going to develop top pathology, and this tal pathology

we're going to cause the cognitive symptoms. So what you're saying is that we used to think inflammation was a side effect, but now we think it is the actual catalyst for this to go to progress. Exactly like this. We used to think non-inflammation as a byproduct of everything that was happen, such as many others as the atrophy of the brain. But what you are saying here, that neuroinflammation is, in fact, involving the beginning of the disease, and trigger all the rest of the process that come in front of neuroinflammation and the loiterontontal pathology. So you looked at the, let's talk about what you actually did in the study of people, because it's fascinating. So you looked at the living brains of people in different stages

of Alzheimer's disease. What did you see? What does that progress of inflammation? and tau actually looked like? We assess 130 individuals, and we measure brain amyloid, tau, and neuroinflammations. And what we saw was that the individuals that have a baseline, they have the presence of amyloid pathology in the brain, and inflammation in the brain were the ones that developed a tau pathology in the follow-up,

and were the ones that developed cognitive decline, developed the symptoms of dementia. We also found that individuals that have in the brain only amyloid pathology that is believed to be one of the cause of the disease did not develop the symptoms of the disease. And the ones that have only inflammation also did not develop the symptoms of the disease. Then our study suggests that amyloid is important, a marker of the disease, as everyone know, but amyloid alone without the presence of neuroflammation cannot lead to the progression of the tau and consequently to the cognitive symptoms.

How do you know that the inflammation is not the result of the disease and you're suggesting it's the cause of the disease? What kind of data information makes you so certain about that? This is a very, very good question. As I mentioned in my last answer, I think for it will be more certain about that. We need more studies with much larger longitudinal follow-ups. But what gives the certainty for us was this in the longitudinal. in our analysis, we have individuals that have the presence of inflammation and amyloid and didn't have topatology yet.

And in this short follow-up that you did, they developed topatology. And this temporal association gives us the inference that this would be leading to this topatology. I agree that much more studies are needed and with much larger follow-ups to better ascertain this hypothesis. Now, is not inflammation, an immune system, I mean, the immune system is usually coming in to protect us from something. Why would inflammation then? Why would the body go in and make Alzheimer's disease worse instead of protecting it?

You are completely right that inflammation have a lot of important and very good functions in our system. But what you believe is that when you talk about a disease such as Alzheimer's disease, the neuroinflammation that's present, the brain is a chronic of neuroinflammation. And in the case of something related to our findings, this was not reported in our manuscript and this is not studied by us, but it's postulated based on many studies in animal models that what may be happened here is that the microglial cells, that are cells that are there as you well mentioned to protect us, the microglial cells try to clean the talpatology in the brain.

The phagocytes the talpatology in the brain. and they try to degrade this tau pathology in the brain. When they degrade this tal pathology, the brain, there are something called tau seeds, and these tau seeds are a part of the tau protein that escape to generate more tau. And along the way, we release these tau seeds, and these tau seeds generate new tau.

For this reason, the neuroinflammation that's there, probably in relation to the amyloid pathology, that are tried to degrade tau, is in fact propagated tau in the brain. So the brain has good intentions, but it's going down the road to hell. Exactly. The microglia has good intentions, but in the end, the microglia, and this is very well established in animal model studies,

that the microglary is maybe not so efficient, and in the end of the day, this microglary is going to release these tau seeds, and the stow seeds are going to create new petiose of tau in the brain. That's really interesting. Would that suggest, then, if you give any... anti-inflammation drugs to, let's say, your lab rats or your animals, and then eventually people, you could test out that theory? This is a very good point, and it's very important to mention that you had many trials

in the past that try anti-inflammatory drugs to treat Alzheimer's disease, and how these trials fail. But what our study is proposing here, our studies propose here that you have exact moment in the disease where these drugs should be tested. For example, we are proposing. supposing that when the tau pathology or the position of tau is confined to a part of the brain where it starts and the patient have amyloid pathology in the same moment, is this the moment that you should try an anti-inflammatory drug? If you try the anti-inflammatory drug much earlier than that, the inflammatory drug will not have any effect because the control group and the disease group both will not have any benefit of the medication because the disease is still not progressing. But

If you try too late, when the Tau Patol is already progressing for the rest of the cortex, this drug is also not going to work. So how would you know then the exact time when you should give the drug? I mean, you can't get into the brains of people, can you? This is a great question. This is a great question. We can know this with the image that we use or the biomarkers that are using our study. You can take a picture of the brain and you can see where is the deposition of amyloid

of Tau and neuroflammation are. We propose that if you use these biomarkers to enrich the population of clinical trial to identify the population that is in the exact moment where the top pathology will progress, we can identify this population to treat in the correct moment. And how would you be able to do that? Are you in that process now of getting further along and trying to give the anti-inflammation drugs at the right moment? I think this is the next step, but I think they need to replicate this findings.

We want to follow these individuals for a longer time to better ascertain what this is exactly moment. I think we need more studies for in the future being able to perform this clinical trial with the correct moment to treatment. Yeah. One last question. I remember that last year the FDA approved the first drug aducanamab for removing amyloid from the brain.

If you recall, it was a bit controversial because the evidence that it helps. actual symptoms, well, that's still scarce. Is there still a use for this kind of drug if we're seeing a new role for inflammation then? In the end of the day, the discussions in the field right now, due to the results of Aducanumab may not be optimal to reverse the cognitive decline of the patients. The tendency in the field now is to try to find a combination of drugs that can better work in the disease progress. And I think what our results suggest, and I think we're even suggesting in our manuscript, is that in fact, the combination between drugs such as aducanumab, that aim to mitigate the accumulation of amyloid pathology with anti-inflammatories will be the best therapeutic

approach for this stage of the disease. Because if you are saying that there is an interaction between neuroinflammation and amyloid pathology leading to total progression, if you're acting the two sides in these two pathosies, amyloid and the inflammation, we're going to have a much potentiate effect to benefit patients. This is Science Friday from WNIC Studios, talking to Dr. Tariq Pasquale about research suggesting that brain inflammation could be a catalyst of Alzheimer's disease progression. You know, speaking of patients, I imagine it must have been very difficult for you to find the right patients and for the patients to participate.

in such a complicated study. Yes, and this is, we are very grateful, and we are sure that who made the biggest effort for this study that happened was not the researchers, were not the staff, but were the patients, is imposed three different PET scans that take hours, a line down in a bed, more MRI, more three hours of cognitive tests. We know how this is an incredible burden for the patients,

and now the patients were always happy and always able to provide more and more information to us. And we are incredible grateful of their collaboration. And it's unbelievable how this can be beneficial to the field. And we are very happy to give some something back, some results back to them. They think that the big effort pays off. Fascinating work, Dr. Pasquale. I want to thank you for taking time to explain it to us.

It really does look like you've made a little bit of an inroad here. Thank you very much. Thank you very much and thank you very much for bringing this to the public that I think is very important to increase their awareness and about Alzheimer's disease and about the different approach and the different efforts that are being made to treat this devastating disease because the public is our final and main end in the end of the day. We get it and I'm sure they're very interested. Dr. Tarek Pascual, assistant professor of psychiatry and neurology at the University of Pittsburgh. And if you want to read a transcript of this conversation, we've got you covered. Go to sciencefri.com slash brains. Before we head to our break,

here's a treat for your ears, a sci-fri soundcape from Chris Hoff and Sam Harnett of the world according to sound podcast. This is a forest in Panama. It was recorded by Laurel Signs. Sound engineer Bill McQuay slowed her recording down so we can hear all the ultrasonic frequencies. Those high-pitched sounds are bats using echolocation to find insects to eat. The lower ones are Katie Dids, sending out mating calls. These sounds are part of a communal listening series. The World According to Sound is hosting this winter. For more about their 80-minute binaural events, visit The World According to Sound,

org. After the break, we'll hear from disability advocates who say the COVID-19 pandemic has revealed many biases that have existed in health care for years. He, I thought, was saying, you're not worth the resource that's basically, there's no point. This is Science Friday. I'm Irafledo. And now it's time to check in on the state of science. This is KER for WWNO. St. Louis Public Radio News. Iowa Public Radio News. Local science stories of national significance. We've been following the stories of how the COVID-19 pandemic has overburdened hospitals and impacted care for those suffering from non-COVID-related illnesses.

We've also seen how these last few years have shown many of the cracks in our health care system and revealed long-standing disparities. Reporter Chris Agusa has been examining the impact on the disabled. community in California for station KALW in San Francisco. He introduces us to a woman who recounts her harrowing experience in the hospital as a disabled person and will meet the disability advocates fighting the bias they found infused throughout the state's pandemic response. Here's Chris. Hi, Ingrid, who's your guys? Oh, hi, Ingrid. Yes. I'm getting in some water and a great TV tray.

Should I set up right over here? Wherever you like. Okay. Ingrid Tischer has lived in this Berkeley apartment with her husband, Ken, for the past 10 years. When I arrive, she's already sitting outside at the top of a gently sloping ramp that leads up to the door. I mean, if you're okay with it, I think maybe up there would be good for the audio. Yeah, especially since we're wearing that. Yeah.

We're both vaccinated, but we're still taking precautions. Masks, outdoors, social distancing. That's because Ingrid has a severe disability. I have muscular dystrophy, which is a neuromuscular disorder that I've had my entire life because it's genetic. It's a progressive muscle-wasting disease, which impacts her mobility, including her ability to walk unassisted. Her respiratory system is weak, so she uses an oxygen device called a Bipap to help her breathe. Earlier in the pandemic, her doctor told her that if she got COVID, it would likely be a death sentence. I'd never heard my situation put in such stark, certain.

terms. Ingrid is in her mid-50s, with graying brown hair and bright blue eyes. She leads fundraising for a disability rights organization, and she's a writer. When COVID hit in the spring of 2020, Ingrid was terrified. Because of the risk of infection and smoke from the wildfires that summer, she stopped leaving her house entirely. She developed anxiety and depression and a host of new health issues. Her feet and legs began swelling. Breathing became more difficult. Her doctor was worried she might be developing congestive heart failure, but because of the risk, told her to stay home rather than come in for tests. And that's not uncommon. A recent survey by a local advocacy group found that many disabled people have delayed medical care for over a year. It all came to a head

one morning in January of this year when Ingrid had a fall trying to get to the bathroom. She wasn't hurt physically, but it left her shaken. She and Ken decided she had to go to the emergency room, the last place she wanted to be. We didn't know if what we were doing was going into a situation where we would never see each other again. When Ingrid entered Kaiser's emergency room in Oakland, it was like being wheeled into the lion's den of the lion's den. For a disabled person, going into a medical setting can feel like going into battle. A recent study from the journal Health Affairs found that over 80% of physicians believe that people with disabilities have a lower quality of life. Like nobody's about to blame doctors and nurses after what they've been doing and what they've been through over the last year.

Jessica Lehman is the executive director of the Advocacy Group Senior Disability Action. But it's that the nuance of thinking that this person's life is not going to have as much quality. that this person isn't going to have as much joy and experience and adventure and success in whatever way all of that is defined as somebody without a disability, right? And so when you're thinking that way, that's subconsciously going to come into those split-second decisions. Decisions about medical care. Now, Ingrid says she's been with Kaiser since the mid-90s and has found that... The providers, the doctors, the nurses, everybody else, for the most part, is quite good.

and pretty, in the least recently, pretty enlightened around disability. And for the first part of her six-day hospital stay, that was also true. The staff quickly diagnosed her with pneumonia and began treating her physical needs. But her emotional state was still crumbling. Then she had an experience that completely threw her for a loop. As her discharge date got closer, Ingrid worried about her life at home after having lost so much function. she'd heard about a special inpatient rehab program that sounded perfect. There was just one problem.

They don't usually take patients with progressive conditions like Ingrid's. So she asked to talk about it with the neurologist who had been assigned to her. And then I said, really sounds exclusionary. I didn't say discriminatory, but I said exclusionary. She and her husband Ken say that the neurologist's demeanor suddenly changed and his tone got sharper. Keep in mind, at this point, she's as vulnerable as. it gets, lying in bed, oxygen mask, pneumonia, and still in acute emotional distress. It's all been documented in the truck, and he said to me, well, look, and he gestured to my body,

and he said, you've always known this was coming. This has been coming for a long time, and you know there's nothing we can really do about it. That was in quotes. Ingrid says she felt like she'd been punched in the gut, and she interpreted what he said even more darkly. He, I thought, was saying, look, you're past the point of no return. You know, why do you expect this to do anything?

You're not worth the resources, basically. There's no point. The exchange sent her spiraling. The next night, she had a panic attack, which she'd never experienced before. Ken says when he visited her. She was shaking when I went in there. This is hard to talk about.

She was shaking and quivering. And she was sitting up in bed. And she said, Ken, I want you to promise me one thing. And I said what? And she said that I can come home to die. You'll have me at home to die. She believed she was at the end of the road. So this, if you'll excuse the expression, this guy's f***ed with my head at a moment when I was extremely vulnerable.

Even though probably didn't mean to, I could believe that. But he's a neurologist. He's got it now. She was successfully discharged, and with the proper supports and exercise regimen, Ken says her condition has completely turned around. Oh, 180 degrees. He didn't know what he was talking about. He didn't know what he was talking about. Many studies have shown that doctors tend to be overconfident in their own diagnostic abilities. And here's the thing. Ingrid says that this experience, it's...

By far, not even close to the only time I've had an encounter like this with a medical doctor. It's just that this time, she was in the midst of a psychiatric emergency. Nearly every disabled person I've talked with has their own stories of pain and discrimination. The dismissal, the invisibility, it's common. Advocate Jessica Lehman explains that this same bias was playing out across a series of battlegrounds throughout the pandemic. We saw the most horrible manifestation of ableism and ageism that I've ever seen. The first of these battlegrounds was the state's crisis standards of care.

a document directing hospitals and doctors on how to ration scarce medical care, who gets treatment, and who doesn't. You may have heard about medical care rationing early in the pandemic from countries like Italy. Medical supplies and resources are stretched thin. So doctors in Italy are facing unthinkable choices about who gets access to things like beds and respirators and who does not. Across the U.S., ICU beds and ventilators started running low. Rationed care. The state's top health officials say Southern California's COVID numbers are so extreme.

They're urging hospitals to review emergency plans in case they have to limit not only supplies and therapies, but how many people receive life-saving care. California's guidelines, they left the door open for elderly or disabled people to be denied care in favor of someone younger or able-bodied. It sent alarm bells through the disabled community and beyond. Jessica Lehman, the activist, also lives with a neuromuscular condition. I remember thinking, oh my goodness, so I could get COVID and I could go to the hospital, and they might say, we don't have enough ICU beds or ventilators. And because you have a disability, you don't get one. And that that would be a death sentence.

They shared news reports from Oregon and other states where a few doctors denied care to people with disabilities. Here, Santa Clara County began taking inventory of ventilators people had at home. Many disabled people feared they might have their equipment taken away and redistributed. It was like seeing everything that I was aware of, kind of the general societal perceptions and prejudices, seeing it in writing and seeing it legitimized and sanctioned. It was just like, oh my gosh, I don't know when we have faced a threat like this. and what are we going to do? What they did was jump into action. Within a few weeks, nearly 30 organizations

had formed the California Care Rationing Coalition. And it wasn't just disabled folks. Brandy Sensiak is an attorney and co-founder of the online movement, nobody is disposable. It was the higher-weight community, the disabled community, the aging community,

all working together from the beginning. And I really think it helped make a big, difference that probably wouldn't have happened if only one of the communities would have stepped up. It was kind of like the Avengers of Advocacy. They had policy groups, legal advocates, and community organizers all working on this one issue, trying to convince the state to revise this document. And the thing is, it worked. California's crisis standards of care now include an entire section that outlines what factors cannot be used to determine health care decisions, including disability. You're listening.

to a special report about disability and the COVID pandemic. This is Science Friday from WNYC Studios. Reporter Chris Agusa has been following the story of disability advocates in California as they fight against bias in the medical system. Chris tells us that this group worked to change the state's crisis standards of care to make sure disabled people were not discriminated against during the pandemic. And because of this intersectional coalition they developed, They were prepared for the next battleground.

It didn't take long. Good evening. We begin tonight with Governor Gavin Newsome, rolling out a new COVID-19 vaccine distribution plan for the state. Ingrid figured she'd be among the first eligible for the vaccine. She reached out to her doctor, but... He said the system wouldn't let up. And he just said, I don't know what to tell him.

She says she felt invisible and silenced. You know, the whole feeling of like I'm screaming on a public. straight and nobody's noticing. I have like a really fragile, super fragile respiratory system. So why wasn't she being contacted for a vaccine? Well, from the outset of the vaccine rollout, people with disabilities and chronic illness were placed behind frontline workers, caregivers, teachers, older adults, and many others. Jessica Lehman participated in public meetings of the state-run California Vaccine Advisory Committee. She remembers this one-scent. slide in a presentation that state officials had put together, which brought everything into stark

relief. It actually laid out, like, what is the goal? And on the one side, it said if the goal is reducing fatalities, then we need to vaccinate seniors and people with disabilities, because those are the groups more likely to die, right? Or if the goal is getting the economy functioning again, then we vaccinate workers so that they can go back to work and open stores and restaurants again. It was like the two groups were being pitted against each other. It just brought to my head everything about seniors and people with disabilities being seen

as a drain on society. Then, in January 2021, Governor Newsom made an announcement that shocked the disabled community. Vaccines would be distributed by age only. Disabled folks would have to wait to get vaccinated with the general public. Once again, the disability advocacy Avengers, fought back. And once again, the state relented, opening up vaccination for people with certain disabilities and chronic conditions in mid-March. But as with many wins for this community, the victory felt incomplete. The list of qualifying conditions was limited. Most people with

disabilities would need to get approval from their doctor. And we know that white people and people with money are far more likely to have a doctor who they trust and who trust them and to have access to medical care, to be able to make that happen. And so this felt like a moment where it wasn't okay to celebrate that. Like if it's not all of us, then it's none of us. Now, most people who want to get vaccinated can. But the spread of the Delta variant is resurfacing questions about equity. And hospitals in low vaccination states like Idaho, Alabama, and Texas are talking care rationing again. In California, advocates are staying vigilant, holding the state to the less biased guidelines. But do hospitals follow them? It's not really binding, and it's really

hard to know. For Ingrid, the last 18 months have left her with little faith. You know, after 55 years of disability, I don't think I've ever felt more profoundly let down by the health care system. She says she's once again been left off the list for the CDC recommended booster vaccine for at-risk people, and that feels like deja vu. But despite the new fears, she's been improving, both physically and mentally. She and Ken went out for the first time in July. They got burgers and sat outside. And she's back to working remotely at the Disability Rights Organization, once again fighting for equity, for the right of disabled folks to be seen, acknowledged, and valued. For Science Friday, I'm Chris Igusa. Thank you, Chris.

His story originally aired on KALW in San Francisco and was produced as a project for the USC Annenberg Center for Health Journalism's 2021 California Fellowship. Abuker Adan provided editorial assistance. The engineer was James Rowland. Oh, one last thing. If you've been waiting with baited breath for our fall book club pick, the wait is,

We'll be reading Rising, Dispatches from the New American Shore by Elizabeth Rush. It's a collection of essays about sea level rise and the people who live in the hardest-hit coastal communities in the U.S., from New Orleans to Pensacola to Staten Island. We want to explore the factors that worsen flooding and how people are working to reduce the impact. Plus, Rising explores the fingerprints of climate change on people who live on the front lines and the ever-present questions of mitigation, adaptation, and justice in the story of global warming. We kick off October 1st. Now is your chance to grab your copy of Rising by Elizabeth Rush.

You can also join our giveaway for a free copy, courtesy of Powell's books, and hop into our many opportunities for discussion with your fellow bookworms. Find more information about all of this and more on our website, ScienceFriday.com slash book club. Charles Berkwist is our director. Our producers are Christy Taylor and Kathleen Davis. John Dankowski is our news director. B.J. Leidman composed our theme music. Have a great weekend. I'm Ira Flato.