In This Episode
DeRay, Myles, and Kaya cover the underreported news of the week— including stolen skulls of Black Philadelphians displayed in Ivy League schools, the massive effort to change the way kids are taught to read, and the life and legacy of Issey Mayake. DeRay interviews activist and founder Elizabeth Pfiester about T1International and the Insulin4All movement.
DeRay Mckesson, narrating: Hey, this is DeRay. Welcome to Pod Save the People. On this episode. It’s me, Kaya, Myles talking about all the news that you don’t know from the past week. The news that didn’t make the top of the charts but is important with regard to race, justice and equity. And then I sit down with Elizabeth Pfiester, the founder and executive director of T1International, a nonprofit working to secure medicine and resources for anyone with Type one diabetes across the globe. We chat about the different types of diabetes, the importance of insulin, and the political opposition to affordable access to insulin. I learned a lot. I didn’t know what the caps were, like what the legislation was that was being proposed recently. And I learned alongside you. Here we go. [music break] My advice for this week is to try and listen to or go watch some government agency meeting, whether it’s a school board or the planning commission, like you got to see how the decisions are made cause’ I’m telling you, once you see it, you’ll be like, okay, I need to be more involved. And that’s how I feel every time, I sat in court recently for a Keith Davis hearing. And I’m like, whooo. More people need to see how court works. School boards. Like, see if you can find a way to sit in. Go look up your next city council meeting. Go look up your next school board meeting and just watch it. You got to watch it. When you see it, you’ll see what I mean. Here we go.
Kaya Henderson: Welcome to another episode of Pod Save the People. I’m Kaya Henderson and you can find me on Twitter at @HendersonKaya
Myles E. Johnson: I’m Myles E. Johnson. You can follow me on Twitter and Instagram at @pharaohrapture
DeRay Mckesson: And this is DeRay. @deray on Twitter.
Kaya Henderson: This was a heck of a week. And I think the biggest thing that happened this week that everybody is talking about is the raid on Mar-a-Lago, Mr. Trump’s private residence, where the FBI went in searching for what was uh assumed to be classified information. And the reaction by people who both support Trump and people who are opposed to Trump has been fascinating. Um, for me, though, the real gangster in this is Merrick Garland, who was has been quiet, has been minding his business, has been dotting his i’s and crossing his t’s and personally signed off on the warrant to search Mar-a-Lago and the world is abuzz, what thinkest thou?
DeRay Mckesson: It’s so interesting because you know it would have never been a big, big story of Trump hadn’t made it an issue himself and he did. And I’m happy Garland did that press conference where he’s like, well, just unseal it. And then it wasn’t even able to be unsealed because Trump leaked it to Breitbart. And the leak of the warrant to Breitbart just was another example of how Trump just refuses to play by any rules and endangers people in the process because the DOJ, in unsealing it, was going to redact the names of the agents who were involved. And Trump, in just putting it out with Breitbart, had all the agents names on it. So those agents are receiving death threats. I don’t know if you saw, but somebody drove through the barricade at the Capitol this morning and then killed himself. There’s an unprecedented number of attacks on the FBI and FBI–
Myles E. Johnson: Wait, what happened? Hold– What had just happened?
DeRay Mckesson: Yeah. You know.
Myles E. Johnson: You just said something.
DeRay Mckesson: Cause’ somebody.
Myles E. Johnson: No.
DeRay Mckesson: Somebody today, well on Sunday, we’re recording on Sunday, somebody drove through the barricade at the Capitol. Car caught on fire, got out as the agent’s started to approach the car, the person shot himself in the head or commit–died by suicide. And then the Secret Service has released a statement saying that there are or the government has released a statement saying that their are unprecedented number, increased number of attacks and threats to FBI offices and FBI agents. And remember, just a couple of days ago, somebody walked into an FBI office with a weapon, fired. How he got out of the FBI office, I will never understand, but gets chased by the FBI agents and then later dies. So, you know, Marjorie, Congresswoman, Marjorie, whatever her name is.
Kaya Henderson: Marjorie Taylor Greene.
DeRay Mckesson: She has called for defunding the FBI. And it is so interesting.
Kaya Henderson: Fascinating.
DeRay Mckesson: To see the Right now be [laughter] anti law enforcement but Trump stole nuclear, did you see, it said Trump stole nuclear secrets. Trump is said to have a dossier on the French president. Trump has–
Kaya Henderson: Yes.
DeRay Mckesson: –the payroll records of of informants and undercover agents for the government. I mean, so when people say that he was a long con asset of Russia, that is seems 100% real and possible. And they couldn’t even take pictures of the documents. You know, it’s like you’re not even a good [?]. You know, you could you had unfettered access to them. You weren’t sneaking like these other people who had to like, you know, log in at night and da da. You, They were just on your desk and you still chose to uh do it in a wild way. And the last thing I’ll say is that the reports are that he was potentially going to sell them for a couple billion dollars. And again, I believe that. So I’m I hope that he gets prosecuted. And the icing on the cake is that after the Hillary emails thing, Trump signed into law a thing that made stealing documents, it made you ineligible to be in elected office again. So if he gets convicted, the law he signed might actually be the thing that screws him over. And DeSantis actually made a really wild law that says that if you publish the names of almost anybody, it is illegal now. And it looks like Trump in releasing the um the warrant to Breitbart might have violated a new Florida law that DeSantis put in to stifle the [?].
Kaya Henderson: What’s fascinating about the Florida piece is DeSantis was on Fox and, you know, the Fox people were foxing, right? We can’t believe that this happened. And he was like, wait a minute, these people did their jobs. They conducted them in an orderly way and honorly way. And I mean, DeSantis totally went on an opposite and was defending the FBI, defending law enforcement, defending how this was all executed. And so I think it’s going to be and I think it was an interesting moment of breaking ranks, because DeSantis clearly is trying to, you know, assert his own independence in uh the impending presidential race, because by all accounts, he is favored to or he is predicted to run on the Republican ticket. And so this uh attempt to distance himself from Trump was very strategic and very interesting to watch. Um but what is also interesting to watch is how I mean, the reaction of the Right to this and how on message these people are and how outraged these people are and how willing to do anything these people are is so scary. And like nobody is talking about the fact that this man had nuclear secrets. Like the right just completely ignores the facts. We know that this is what they do, but my worry is that this becomes a rallying cry for um a Trump presidency. And like [worried sound] just when we thought it was over or looking like it was over, we’re back in Trumpamania again.
Myles E. Johnson: Like, I just could only help but to zoom out on this conversation because it just it sounds a little surreal. It sounds a little like and I don’t know if you all are having any cases with this when you’re like listening to like the news. It’s just like, this is really happening? This is really going on? This is really uh the state of things? And then like how scary is that that that was that that was happening. It’s just it’s a little surreal for me. That’s why I was like, I can’t actually comment first because uh what? And like, what if it happened? [laughter] Like, I think that’s what’s going through my head too like, what if it just happened? Like, what if, you know, the process was a little slower and it happened like what? Like where would our safety as a nation be then, it’s, it’s quite sad, quite scary, quite cartoonish. Um.
Kaya Henderson: I also want to raise the piece of news about Salman Rushdie getting attacked on stage uh and stabbed um almost within his life. You know, for decades now, there has been basically a governmental sponsored hit out on him by the government of Iran, uh because of his book Satanic Verses, which some Muslims view as blasphemous and offensive. And basically, like the government of Iran said, we’ll give anybody $3 million dollars if they take this cat out. And so he’s been in hiding for years. And, you know, I guess it looked like things were letting up. And he goes to this literary festival and is on stage, about to speak and is rushed by a young man who stabs him repeatedly. And like, I just I don’t understand. Like, I feel like we are. You’re right, Myles. It is completely and totally surreal. Like what is going on in the world?
Myles E. Johnson: Yeah. And I think when I hear stories like that, I’m so weird, right? Because I hear stories like that, I always remind myself that obviously this country is just as gangster and just as and I think there’s just the same dog whistles that happen um because I think sometimes stories like that are pregnant with a lot of um Islamophobia and kind of like Xenophobia, like look what they’re doing, look how savage they are. And and what I really hear when I hear stories like that is like how actually parallel to what our nation does to uh people who are either expressing their free speech, people have dissenting politics or different politics. Um and people you know, you, I just heard this news about the um Sunday, this this, this thing that just happened at the Capitol. I’m still like obviously blown away by it, [laugh] I’m like what? And I, I just heard those news, but I’m like, that is very parallel to this story. Um, and I think, yeah, I think the only way to really uh think about it is to remem– that this is happening globally, that this kind of like collective journey into insanity is happening globally and its, and you’re not safe just because because of propaganda that your nation’s better.
DeRay Mckesson: Yeah.
Kaya Henderson: Yeah, that is absolutely right.
DeRay Mckesson: And what’s really wild about Salman Rushdie is that the Fatwa on him has been, as you said, out for decades. Right? The ayatollah put a hit on them. You know, they said that they eased it, but he gets stabbed at Chautauqua. He gets stabbed at like the Clinton upstate New York conference. I was supposed to speak at Chautauqua, then I got arrested in Baton Rouge. This is like a, this is not like some random community center in the middle of, like this is Chautauqua. And that is that is really scary. And it’s like when people talk about the threats that people face and da da, this, what happened to Salman Rushdie is actually the threat. That is the real thing. That is the like, that is that he put ideas out in the world and people tried to kill him because of those ideas. It is not what some people talk about, cancel culture and uh the news is reporting today that he is expected to survive, that he was taken off the ventilator, that he will likely recover. There were reports earlier that he might have gotten stabbed in his eye, one of his eyes, and might not be able to see, which is really sad. But, you know, shout out to Salman Rushdie for being incredible author and for pushing the envelope and in a in a context where, you know, when his when that book got released, there were riots, you know, that was like a crazy moment in in literary times. So it has been a wild week.
Myles E. Johnson: And I think that a lot of times and I think me and you DeRay had a conversation about this privately that um sometimes we undervalue the power of literature and words and ideas because we can spew them so easily because of social media um and I think this story, if there if anything any semblance of a silver lining is that obviously ideas in the written word are still extremely powerful to people and and and and revolutionary and they’re still really important because this would not happen if they weren’t so. The little segment of optimism I could find. [laugh] The fashion world took a hit. I don’t even know if, the fashion world didn’t take a hit. I’m gonna stop saying that. Just cause somebody dies doesn’t mean that a tragedy has happened because this person was 84 years old, a fantastic designer, led a great life. Fantastic artist who I’m talking about is Issey Miyake. He died at the age of 84. Japanese designer. One of the, and speaking of surreal moments, I love surrealist designers, designers who are left of center and artists who are left of center, because I think that they make us uh handle the psyche of what we’re dealing with. I think that that has to be the reason why Salvador Dali became um really famous and why Frida Kahlo has um became really famous and still really significant is like I think that when somebody decides to be as surreal and ridiculous and as um and as avant garde as the times that you’re in, then that kind of creates a comfort in the person who’s viewing it. If the person was wearing it, the person who is admiring it and I think Issey Miyake, really, really did his work. Um one of the reasons why I brought him on the podcast, besides just his passing, is that, you know, you forget how many Black women Issey Miyake dressed and let be avant garde. So not just exploiting bodies and um being kind of like leaning into like stereotypes of what Black womanhood should be and how Black women should dress. But really letting Black women be avant garde, which is a space that I think traditionally has been hard for Black women to occupy. So um dressing people like um Grace Jones again and again and again. I was like looking up Issey Miyake and Grace Jones, and I was like, Oh, they were not only besties, but the outfits and the looks are endless and some of her most avant garde, most interesting outfits. And I just think that that was so just fascinating how that kind of clicked in my head, how, you know, it really does take these ambitious, uh forward thinking designers to really give other people who they are dressing access to worlds that you don’t get to occupy all the time. And I think that legacy is just so significant. Also kind of want to see Kay–what Miss Kaya thinks um because I do have some, is he mixed with Negro allegations? And I’m not the only one of my friends. [laughter] I’m not the only one of my friends.
Kaya Henderson: Say what? [laughter]
Myles E. Johnson: I’m like I’m looking at some pictures and I’m like, that looks like my stepdad in 1972 and, you know [laughter].
Kaya Henderson: Hold it now, hold it now.
Myles E. Johnson: And now I know that, you know, blah, blah, blah. Blackness is not all aesthetic and how you show up but but I, that that looking Negro looking looking, looking Black and I’m and I want to claim him. [laughter] And and it would explain how come he was so open to dressing some of the most significant um uh Black women artists who are pushing boundaries. Uh if he had a little bit a Negro in the [?].
Kaya Henderson: Woo say less. [laughter] You know I [laughter] I’m here for claiming our people. [laughter] Um I really. Yeah. I mean, I think part of what is I’m looking at these pictures and, you know, could be for sure. Um, I think one of the things that I love about Issey Miyake is his his philosophy about clothing. Right? And he talks about um about clothing being about freedom. Right. And how clothing should how how clothing should free people from bodily constraints. And that’s exactly the opposite of how we think about clothing usually in fashion. Right. I was reading an article and he said that clothing must bestow freedom on those who wear them. Uh and he talks about clothing, you know, freeing you from bodily constraints and from emotional and creative inhibition. And so I think the art shows up in a particular way, and we can appreciate the aesthetics. But for me, these ideas of freedom from constraints and creativity and uninhibited ness and the philosophy underlying the clothes was super, super exciting to, like, learn about. And I have a little I have a, I’m carrying a backpack right now that is very Issey Miyake-ish. It’s not his because I got it from TJ Maxx or somewhere like that, but it looks like it could be his. [banter] Because it is a total is a total origami looking. And everywhere I go people are like, Oh my gosh, that’s so hot. Um, I feel like it’s exciting that he took Japanese culture. And, you know, origami is clearly like a a key component of Japanese culture and re-imagined it and expanded it to lots of different kinds of people, especially to Black girls. And so, yeah, he had a little, you know, cocoa, that’d be an added plus. [laughter]
Myles E. Johnson: Added to your piece about finding freedom, it always reminds me of just throughout my life, throughout my life, gender identity, body um body stuff, just being somebody who grew up in the late 2000s child. You gotta you got to hear some body stuff [laugh] and how much fashion, no matter where I was in my gender uh security, let’s say, and then would let in, um no matter where I’ve been in my my body type, fashion has always been a place of freedom. And I think it’s those type of designers like Issey Miyake who makes who who has uh fought that the narrative of fashion is that, no, this is about this is about freedom. This is about, um you know, losing all your inhibitions when it comes to expressing yourself and finding some freedom. And and I think that, again, artists like Solange, like Lady Gaga, like Grace Jones, um uh Isabella Blow, these are the artists and the people who kind of showed us that fashion could be a way to um comport yourself from insecurity to security through the world of fantasy and expression.
DeRay Mckesson: I will say I didn’t realize that Issey Miyake was the Godfather of pleating and pleats until he passed. And I was like, Oh, that’s where that look came from, shout out Issey Miyake. There are two quotes that I loved the most, and uh it reflected Issey Miyake. One is, when I see someone in the street wear my clothes, I think, did I do that? I love to see people make the clothes belong to them, make them no longer mine but their own. When I see the clothing worn, our communication is complete and it’s like, that is really–
Kaya Henderson: Aw, That’s beautiful.
Myles E. Johnson: Beautiful.
DeRay Mckesson: –the best you can do with art, right? Like that is it. And then uh the other one I love from him is, all of my work stems from the simplest ide– All of my work stems from the simplest of ideas. They go back to the earliest civilizations, making clothing from one piece of cloth. It is my touchstone. I believe that all forms of creativity are related, and I love that. The like. You know, sometimes we live in a world where like the extra is the thing. And this idea that more sometimes it’s just more not better. It’s such an idea that I think we lose so often. And I and I really appreciate that advice.
Kaya Henderson: Thank you for bringing this, Myles. This, I feel like, you know, for a whole lot of our cousins, they only know Issey Miyake as a purveyor of perfume. Right?
Myles E. Johnson: Mm hmm.
Kaya Henderson: Um but I hope that this will inspire people to go back and look at his pieces and to more deeply understand who he was. This was a cool conversation. [music break]
DeRay Mckesson, narrating: Don’t go anywhere. More Pod Save the People is coming.
Kaya Henderson: [music break] My news. On the other hand, not such a cool conversation, [laughter] but we need to know about these things. We need to keep on knowing about these things. And so my news is about a debate that is going on in Philadelphia and it surrounds the reburial of some remains of remains, skulls of Black Philadelphians that have been displayed in classrooms at UPenn over the last six or seven years. What happened? So there are 13 skulls of Black Philadelphians uh that were clearly removed, violently acquired, violently acquired, you know, not in the appropriate way uh by a man named Samuel, Samuel George Morton. Samuel George Morton was a physician and an anatomy professor who used racist pseudoscience to advance white supremacist ideas. He amassed more than 1300 skulls as part of the Morton cranial collection, which is housed at the Penn Museum. And in that, since 2014 or so, many of these skulls have been uh present in classrooms at UPenn, where uh students are taking introductory and advanced archeological classes. Skulls of Black people that were obtained purely illegally and are literally sitting in classrooms where people are discussing the impact of the size of brains and the size of cranium to support or discount the supremacy of white folks. Um and the debate that’s happening right now. First of all, it’s galling, um every time you hear about how we are being treated. And there was an interesting quote in the article that said, because Black lives were not important, neither was Black Death. Right, which I find to be really, really telling. And so our ancestors are sitting around here in these classrooms disrespected and in the, you know, post George Floyd aftermath and racial reckoning. These museums are asking themselves, how do they make it right? Um, It’s not just the University of Pennsylvania. Virginia commonwealth has remains, uh Harvard has remains not just of Black people, but of Native Americans as well. And many of them are trying to reconcile how they show respect at this point. One, to understand where their collections have come from and then two, how to show respect and in in remedying the situation. And so the director of the museum says our goal is to do the right thing and rebury these individuals after 170 years and do it as respectfully and as dignified as we can. That should be good news. But of course, there’s a controversy because um the community members believe, the Black community members, for the most part, believe that um the Penn Museum should not be leading the effort to rebury the remains. And one of the community activists said, I don’t think an institution that has financially, culturally and socio politically benefited from the violent removal of remains from the ground in the name of so-called science can be the same institution that holds the healing process. That from Abdul Ali Muhammad, a lifelong West Philadelphia native community activist and a member of the Community Advisory Group who actually filed an objection to the reburial in the Philadelphia Orphan’s Court. So this is all being played out in court. Everybody supports the idea of reburial, but how and who does it uh is really important. And that is the thing that is up for debate. Samuel George Morton literally was recognized as a cutting edge physician and scientist. A lot of his work fueled the beliefs in the antebellum South about slavery and white supremacy. Uh and so it is this is part of the dismantling of the pseudoscience that has kept us down. But who gets to decide how, is a really, really important question. And so um I brought this to the pod because I think um it’s important for us to know um and to hold these institu– and to know what’s happening and to hold these uh institutions accountable for remedying these kinds of transgressions that they have committed on Black bodies in life and in death.
Myles E. Johnson: A few things, I think. Thank you for bringing this to the podcast because a few things happen to me when we talk about white supremacy, specifically in the modern context. Is and the primary thing to me is that um when we start talking about violence and death and stuff like that, it’s really always this like part of like. Like it’s always war. It’s always somebody has killed somebody because they felt threatened or because they didn’t like them or because they want this exterminated. But as uncomfortable as it is to talk about, I think that it has to be thought about and talked about. Um, if we really want to understand and eventually transcend this world of white supremacy that’s been built, it’s like the deep necrophilia that’s in white supremacy and how there has always been this kind of like lust, interest, curiosity about the Black dead body and our and white supremacy’s relationship with it and white folks relationship with it. And and down to, you know, we all know the stories of like what happened to Black folks and Black men and Black women. The mutilations held during chattel slavery. That legacy is still really with us in that. And this story really reminded me that there’s this like deep curiosity and fascination with Black bodies that we can still find um either how people sexualize us and also how people treat us once we’re even, once we’re even gone, and how and how people um interact with our bodies. And that’s made that’s what this made me think of, first off. And then also and I’m glad that you kind of returned to it before you, uh before you ended, uh before you ended, but you presented it as a pseudoscience. But then also this is ideas that are that that the medical institutions today are still built on. You know.
Kaya Henderson: Say it. Say it.
Myles E. Johnson: The medical medical racism today is still built on what we’re calling a pseudo science. I think separating as past silly pseudoscience and and today we’re way better? That is a total misrepresentation of what’s going on. We are still um people are still dying, still being injured based off of the sciences that were happening um in yesteryear. [sigh] Ciao, that’s my number three was ciao. [laughter]
DeRay Mckesson: I think too, you know, this is what so Kaya I had not heard of this at all until you put it in the chat, like I hadn’t seen it on Twitter, hadn’t seen it on the news. Nobody sent it to me. And I was at first I was like, Oh, this is the MOVE bombing. This is, this is those bodies. And then I was like, Oh, this is a whole different.
Kaya Henderson: No honey.
DeRay Mckesson: It’s a whole different thing. Philadelphia has had a whole moment with remains of people. The second thing, though, was was sort of piggybacking off of what Myles talked about, this idea of the artifacts of white supremacy become currency and commodity and what does it mean? You know, we think about the trading uh of body parts during lynching. We think about the display of skulls in 2020. Not this is not like somebody saw these skulls on display from a classroom in 1905 and we’re like, why were they doing that? It’s like in 2020, you have formerly enslaved people’s skulls up in glass cases in the university. Doesn’t it, it is truly wild. And I do think it is one of those reminders that the um that the pageantry of white supremacy is still very much present. Right. That like white supremacy is not just a set of ideas and beliefs, it’s not even just a set of policies and laws and practices. There is a pageantry and there’s there’s like a way that you display the supremacy of whiteness that continues to operate. It’s why the monuments matter. It’s why like all of this is sort of in that same theme. And I was just shocked. I You know, I was thinking the other day, too, about like in not teaching, like in refusing to allow Black people to read and write, the horror of that moment is just not understood, you know, but we only understand it in pictures and stuff, but there we have not yet seen a narrative of somebody just recounting the day to day horrors and what that was like. Right? And that is like one of the what happens when you just like do not allow people to read and write. But I think about how many people outside of this moment knew those skulls were there. Like how many people participated in allowing the skulls, that’s crazy. That’s like, you know, you don’t put skulls up by, like, randomly in the middle and you’re like, oh I just put a skull up. It’s like a lot of people had to participate in doing it, allowing it, cleaning the cases, not [?]. I mean, that is actually one of the things that shocks me.
Myles E. Johnson: Is that’s the veil that’s that veil of normalcy because so they took somebody who was obviously removed or somebody who wasn’t as uh normalized in that to see like, this is weird, this is strange or this is wrong [laugh] or shouldn’t happen, but that veil of normalcy will have people doing it like it’s it’s gross. Then we have the nerve to watch American Horror Story. We don’t need that, [laugh] It’s still horry.
DeRay Mckesson: My news is about literacy. It was one of these pieces of news that I saw and I was like, hmm we got to talk about this. So it’s about literacy instruction. And and the article is called Inside The Massive Effort to Change the Way Kids Are Taught to Read. And it opens with a story about a reading curriculum called Open Court and how it was used in Oakland. And for seven years in a row, Oakland was the fastest gaining urban district in California for reading but teachers hated the curriculum because teachers felt like the curriculum was too robotic and they pushed back and it was replaced in 2015 by a different curriculum. And now, uh they you know, 19% of black kids can read on grade level in Oakland as the as the article reports. Uh and now there’s a petition to bring back Open Court. And what the article continues to go on, is talk about the way that we have sort of like played with uh reading literacy over with literacy education over time. And you know it is really interesting like the numbers are as bad as you can imagine, right? In 2019, before the pandemic, about 35% of fourth graders met reading standards uh even lower number than in 2017. And only 21% of low income students, um which is free and reduced lunch, 18% of Black students and 23% of Hispanic students considered on track reading by fourth grade. So the numbers have been that bad for a really long time. But one of the ways is that you teach new readers to read is like repetition. It’s phonemes, recite words like it is it is making sure that the kids like understand the letters. I remember I was a math teacher, but we got taught to teach. It was this idea that literacy is everybody’s job, so all the teachers had to be trained in how to do level libraries and how to they could just write books for kids. But the way that we have taught reading has been really up and down for a long period of time. And I wanted to bring this here because I was interested in this conversation about what happens when you know people choose strategies that are good for adults, but not necessarily good for kids. Even when kids start to do better with the strategy, how do we make sure that there is not as much variance so that, you know, as we introduce new curricula or change curricula uh that kids still learn and you know we know that there is no way for you to be a upwardly mobile person in society or to reach the goals that you want if you can’t read. Reading is one of those foundational skills. So I want to bring it here. I am fascinated by the way we talk about learning loss, the way that we talk about literacy and the way that we teach it.
Kaya Henderson: So, I mean, this is I’m just going to break it down for the lay people because we speak education needs a lot, right? Like this is phonics versus whole language. And these are two schools of thought. One is you need to be able to decode or sound out. Many people will recognize the phrase, how do you sound out that word? Right? And you. And that means that you can decode or read any word by sounding it out. You won’t know what it means, uh but you know how to read the word. Whole language is about teaching kids words in context and memorizing words that they see all the time and guessing what the meaning of a word is by the environment that the word is in, and other clues that you get in the book, pictures, etc., etc.. And this phonics versus whole language debate has been going on for decades. And what’s striking to me is a couple of things. Number one, it wasn’t until the I mean, the departure from phonics to this whole language thing was shocking to me because I grew up I learned how to decode first and then ultimately learn comprehension. Um, and when I became a teacher back in the early nineties, there was no phonics being taught in our school. And I was like, what is this whole language thing? This doesn’t even make any sense to me. And now, decades later, after we have pushed whole language on a whole lot of especially low income schools where that served kids of color. The science of reading you’ll hear now lots of people talking about the science of reading, which basically says you need to teach decoding. And it wasn’t until wealthy people started to figure out that their kids can’t read either, that they were like, well, wait a minute, let’s go back to the data and the research. And they were like, wait a minute, there’s a whole science around how you teach reading. None of this is new, like we have known how to teach reading for eons, but there is a very influential academic out of Columbia University Teachers College. Her name is Lucy Calkins and she espoused a philosophy built around on whole language called reader writers workshop and lots of wealthy people especially loved that because it’s all about giving kids a literature rich environment and helping them to understand reading through these context clues. And it didn’t work well at all for kids of color, poor kids, and ultimately didn’t work for wealthy kids. And when I tell you, there are so many schools and school districts around the country that use readers writers workshop and, you know, there is professional development around it. There are billions upon billions of dollars that have been spent on this way of teaching reading that, like everybody who teaches reading deeply knows that this is not the way to teach reading. Like, this was a hustle. It was I mean, I’m not saying it was an intentional hustle, but it was a hustle. These folks made zillions of dollars and now they’re like, ooh, sorry. Right? We were wrong. We will add decoding to Readers Writers Workshop. And so there’s a whole big thing going on in the publishing industry in education, around how you write this ship. You’re looking at mayors like Eric Adams in New York who are passing laws to require the teaching of phonics and decoding um like we are at a crisis in America, a literacy crisis in America, basically because we ignored what the science and the data said. And we went with, you know, what some wealthy folks decided was the way they wanted their kids to read. And now zillions of kids cannot read appropriately. And the remediation that we have to do to fix this is huge. Um, and so you see lots of schools and school districts now doubling down on teaching phonics and doing professional development around this. Like this is a thing. And nobody like people are like, oh, sorry. That’s all. We’re going to redo our stuff and you can now buy this new stuff. That’s the stuff that’s galling for me. Right? There’s no accountability at all. And now teachers are feeling besieged because they got to go to all of this training and professional development to learn how to teach phonics, which they weren’t taught in many of their, you know, uh teacher prep programs. And like the whole field is upended now because we need to do what we knew how to do all the while. But we’re swayed by a handful of really influential voices. This makes me so angry. We taught phonics child. [laughter] [banter] You know I’m old school.
DeRay Mckesson: Myles I don’t know if you know, but D.C. public schools under the one and only Kaya Henderson was one of the few urban districts that outperformed charter schools that increasing student achievement for some years. Let them know Kaya. Let them know. You not gonna let them know? We’re gonna let them know.
Kaya Henderson: Listen. I’m gonna let, I’m gonna let them know. When I got there, we were the lowest performing urban school district in the country. When I left, we were the fastest improving. Six years later, we’re still the fastest improving. They not we I don’t work there anymore. [laughter] They’re still the fastest improving according to the National Assessment of Educational Progress. And part of it is because we had a deep commitment to teaching phonics and decoding and making sure that kids could read.
Myles E. Johnson: But I guess what I’m what I’m lost on as somebody who is just not in that world at all, which I, I guess it’s a good thing because I’m asking probably questions that people may have at home is what is the, I’m a little bit lost on what was the central motivation behind changing it? If it was working and everything was going well, what was the central motivation but like behind it?
Kaya Henderson: Teachers. As DeRay explained. As the article explained, teachers felt like it wasn’t, it was too robotic. It wasn’t allowing them the freedom. There is a way to teach phonics.
Myles E. Johnson: Got it. Got it. Got it.
Kaya Henderson: There’s no two ways about it. This is not the place where you’re gonna add your own. You can actually remix it and add your own stuff. At Reconstruction we have a K through 2, kindergarten through second grade reading curriculum that teaches phonics and decoding with all Blackety Black content. Right? So there are still ways to be creative in the teaching of phonics, but there were a lot of teachers who, you know, didn’t who were not supportive of the way you teach phonics.
Myles E. Johnson: Got it. Got it. Um, Yes. Still no significant commentary. [laugh] [?]
Kaya Henderson: It’s some inside baseball. But I think it’s really important for people to understand that there are these like cataclysmic decisions that are made every single day in schools and school districts that will impact broader society for generations. Like there are generations of people who cannot read and they will struggle with housing, they will struggle with jobs, they will struggle with whatever. And we will have to take care of them because we made some crazy decisions in the schoolhouse.
DeRay Mckesson: It is so interesting too about the, we covered this. I don’t know if you were on the pod but we definitely covered this at some point about the way that literacy research has like literally shaped so much and how the whole like um what was it? It was like the kids need to see two million words? Remember that study that was debunked later?
Kaya Henderson: Yes, totally.
DeRay Mckesson: Can you tell us about it?
Kaya Henderson: Yes, absolutely it. Yeah uh. Basically, it’s the reading gap research, right? Which basically said and I don’t remember what the exact numbers were, but it said that rich, wealthy kids generally, by the time they got to school, had been exposed to X million words and poor children were exposed to far, far fewer than that. Right. And so the reading gap begins even before you get to school. And so you needed to provide especially poorer kids with a literature rich environment, books in the house, you know, people reading to them, all of this stuff. And actually that study was debunked because it was it was done on like a like the N size was super small, but like.
DeRay Mckesson: They were like 30 Black people
Kaya Henderson: The parameters of the study, right? The parameters of the study. Where something that would not like pass the smell test for modern research today, but it was so prevalent in education circles that we based all of these policy decisions, resource allocation decisions, all kinds of stuff on this one study. And I think that is the problem in educational research. We have research that says X and research that says the opposite of X and we take whatever research works for us or is of the moment and put a ton of energy, resources, etc. behind it. Without the rigor of deeply understanding what this research says, how it was developed, who are the authors of the study? All of that. Don’t get me started.
Myles E. Johnson: Yeah. Sounds like white supremacist informed classism is–
Kaya Henderson: What? What? [said sarcastically]
Myles E. Johnson: Like is controlling the education system.
Kaya Henderson: You said that. [laughter]
Myles E. Johnson: And yeah because even when I was listening to you all speak about the piece on um I just think in general it’s so important when you live in a nation where it used to be illegal for Black people to teach, you have to this is like you wouldn’t expect for me to say that but you like to me it just seems like you would have to legislate against that, but you would have to make sure that those foundational laws don’t somehow recreate themselves and express themselves in modern times. And you don’t you don’t just hope it doesn’t happen. You have to kind of make sure it doesn’t happen. And from what I can tell, again, this is not my level of expertise, but from what it seems to me is that somebody wasn’t doing their due diligence about making sure that didn’t happen. And look, here we are with Black kids not being able to read as good or not be able to read at all, which is a recreation of the same law that was happening hundreds of years ago where we were forbidden to read. Like you have to be adamant about preventing the recreation of that happening, and it seems like that was happening.
DeRay Mckesson: I think about this because in the organizing part of our world, we are and Kaya I want to talk to you about this when I had, we we don’t have [?] up but I’m coming to Reconstruction is um we’re thinking about justice involved youth and diversion programs and Myles I don’t know if you’ve ever seen a 16 year old that can’t read or reads at a second grade reading level. But it is very hard to do group instruction with a 16 year old that can’t read. You know, they you know, second grade reading books are picture books and very small chapter books. And you just can’t get a group of 16 year olds to do that. You know, like the shame and guilt [?]. And, you know, I haven’t seen, Kaya and I’m interested in, I haven’t seen a dot, a lot of adult literacy or like older literacy to make up that works, you know, like we just sort of forgot. So those kids, when we screw them over in elementary school, Myles they are screwed, you know, like we really are just let them.
Myles E. Johnson: Yeah.
DeRay Mckesson: And I think about that a lot. So when we think about the downstream effects of like what it means to be justice involved or like, you know, you have no career options or can’t follow your dreams because literally you can’t read it. It is actually real and monumental. So. [music break].
DeRay Mckesson, narrating: Don’t go anywhere. More Pod Save the People is coming.
DeRay Mckesson, narrating: This week, we welcome activists around Elizabeth Pfiester on the pod to chat about her nonprofit organization, T1International and the Insulin for All Movement. A lot of us have proximity to diabetes, whether you are diabetic or in my case, my great grandmother was diabetic. And I learned so much in this conversation, Elizabeth, about the fight around insulin. I just didn’t know. I had seen it on Twitter. I knew the headlines, but could I talk about it well? I couldn’t, and now I can. We talk about the problems, the solutions. Join me in welcoming Elizabeth to the podcast. Here we go.
DeRay Mckesson: Elizabeth, thanks so much for joining us to Pod Save the People.
Elizabeth Pfiester: Thank you for having me. I’m excited to be here.
DeRay Mckesson: So I have a lot of questions about insulin. My great grandmother who helped raised us uh was diabetic, and I remember every day having to go and she had like a little tin can in the top drawer of her dresser. I had to go and get it for her if she was sick or something it was like a whole thing. And as a kid I didn’t know that every old person didn’t have to deal with this. Like, it was just like uh like she raised us. And then. And then as an adult, I was like, Oh, my God. I, like, don’t know how Nanny paid for it. I don’t know. I’m like, this is we really um leave a whole set of people out to dry. And insulin has been in the conversation more now than ever, I think in the public conversation. So let’s talk about it. The first, though, is your story. How did you get, did you grow up studying insulin? Are you like whooo! You’re like an insulin scholar? Like, how did you get to be an expert on this issue?
Elizabeth Pfiester: Well, I was diagnosed with type one diabetes when I was four years old. So I have very strong memories from childhood of being in the hospital for about a week’s time and um being stuck full of needles and being monitored and learning that I had something called diabetes, which has the word die in it, which is kind of scary. So that’s really what brings me to this issue. And I you know have always been pretty overwhelmed by all the problems of the world. And when I started to study and learn about global crises and and general challenges around the world, I finally honed in and realized, okay, there are people around the world, in my own country, uh the United States and and around the globe who cannot access this essential medication. It costs a couple dollars to make. But people are having to pay hundreds for for a vial that uh they need to survive. So just kind of became really outraged when I learned that um people were still dying because they couldn’t access their insulin, because living with type one diabetes or any kind of diabetes, you need to monitor yourself. You need to look at your diet. You need to take medication and do all sorts of things that you really it takes a lot of work and and it’s and it’s incredibly exhausting. So it’s it’s very personal to me. And the fact that I have had a lot of privilege over the years really got me interested and frustrated that I was lucky to grow up in the States, but I also had to pay a lot um between the time when I didn’t have health insurance. Uh when I graduated from college, before Obamacare kicked in, I had to pay a lot to be added back on to my parent’s insurance. And then I moved to the UK for a brief time and I and I now live here pretty permanently. But the UK has the national health insurance system, which is a system that provides insulin and supplies for people uh who pay taxes under that system. And I kind of saw and have got to experience what it can be like, what a health care system that functions can be like. In compared comparison with the with the United States, where any any medical condition, but particularly diabetes, you have to really sacrifice a lot or ration your insulin, which is very, very dangerous.
DeRay Mckesson: Now, let’s zoom all the way out. And how many types of diabetes are there? What’s the difference? Does everybody who has diabetes need some sort of insulin?
Elizabeth Pfiester: Yeah. So there are two main types of diabetes, but lots of other types actually. Um, so I’ll give the kind of short version. Type one diabetes is an autoimmune condition, which means the cells in your pancreas get attacked and essentially can’t produce insulin anymore. And insulin really regulates uh things in your body. It turns like what you eat into glucose, so energy, so that you can can function essentially. So with type one, your body pretty much stops making insulin completely so you have to take injections or use something called an insulin pump and monitor very consistently, my my device just beeped actually. With type two diabetes, insulin isn’t always required, um although many people with type two diabetes do end up being on insulin. And it’s more a case where the insulin that is in your body isn’t used properly or there’s a reduction in production of insulin. So sometimes things like medication um or dietary changes can can improve. And then there’s other types of gestational diabetes and something called LADA and MODY, which are different variations, but all of them require monitoring, lots of care, lots of decisions that you have to make. Um and, you know, we can get into this later perhaps or now, but there’s a lot of stigma around diabetes as a whole. And and that’s a problem um because we don’t want to have any sort of uh we want to fight in this movement, which we’ll talk about the insulin for all movement. We hope that we can fight as a community of people with diabetes rather than have any sort of stratification or um competition against types of diabetes.
DeRay Mckesson: So now let’s talk about why does insulin cost so much? There was a bill before Congress or there were some legislation to potentially cap the costs. I heard a lot of people say, you know what, you just said. The patent was sold for really cheap so that people could produce it really cheap. It doesn’t cost a lot to make insulin then like why does it still like what is the reas–? A ton of people have diabetes. This isn’t like a rare issue for people. Why is this still such a problem in the country?
Elizabeth Pfiester: Yeah, as you hit the nail on the head, we just we just finished the 100 year anniversary of the discovery of insulin. And–
DeRay Mckesson: –100 years, really?
Elizabeth Pfiester: 100 years ago was when it was first injected um and sort of used. And isn’t that outrageous that a vial, a tiny vial, um and I need two or three of those every month cost list price around $300. Um so my opinion and the opinion of T1international, which is the advocacy organization that I am part of, is that it’s pharmaceutical industry greed purely. We know that the American health care system is broken, but absolutely at the top of that chain is the pharmaceutical companies. And they can just decide what price to set. They can make it for cheap. It’s been around for 100 years and they decide to mark up the price because that helps keep their profit margins high. And we see this around the globe. So we do a survey every two years that looks at what people have to pay out of their pocket for their insulin and their supplies. And even though someone in Ghana, for example, might not pay $300 a vial, they’re having to pay huge sums, huge percentages of their annual income. So again, we see this around the world where people are struggling because most of their monthly income is taken up by insulin and the supplies that they need so that there are some really complicated answers. But again, the simplest answer I think, and for people that you might talk to in the insulin for all movement is, is greed and and power and corporate interests. Um, they do they use a lot of kind of sneaky tactics and put a lot of money into government and lobbying and marketing to make sure that their profits can stay high and to make sure that they look good, like they’re doing some benevolent things like patient assistance programs that, by the way, again, we can go into a long tangent on that, are not a solution to the insulin price crisis, um but they will do a lot to to make people think that that they’re not price gouging and putting people’s lives at risk. But I believe they are.
DeRay Mckesson: Now, explain to us what was before Congress.
Elizabeth Pfiester: So there’s been a lot of interest and talk about what’s going on federally with insulin price legislation. And we have done a lot of pushing to. Our main goal is a true insulin price cap, which literally caps the price of insulin at $35 per vial, ideally in total for what you would need for the month. And although we’ve been pushing for this, there’s been a lot of, as usual, politics at play. So there was something called the Insulin Act, which was put forward. But really, in essence, what it was was a co-pay cap. So there’s a lot of confusion around the term co-pay cap and price cap. We see a lot of politicians talking about price cap and talking about an insulin price cap and wanting to take action on insulin. And in reality, what most proposals have included have been what’s a co-pay cap. So that’s people who have insurance. And as we know, there’s a lot of people who don’t have insurance, particularly people of color, are more likely to be uninsured. And we’ve seen that many of the deaths that we know about from insulin rationing are the uninsured. So most things that have been put for passage federally have been at best, a co-pay cap, which only helps a percentage of the population of people who need insulin. It doesn’t help the most vulnerable. And usually it’s it’s complicated in that, again, it’s only per insulin type and a lot of people need multiple types of insulin. So we’ve been pushing for stronger legislation and uh the Insulin Act was one of those things that we were pushing to be stronger. It then got sort of shifted and put aside and now we’ve got the IRA, the Inflation Reduction Act, which is has has gone forward, but the only provision that’s been included is a $35 co-pay cap for Medicare beneficiaries. So any other of those provisions, even the ones that I was talking about, that still weren’t what we wanted, have not been included. Um our advocates did a demonstration outside of Senator Schumer’s office in New York to try to push forward and get this at least the co-pay cap put back into the reconciliation bill. Uh we had hopes that that was going to happen. And unfortunately, both the Republicans and the Democrats have been hugely disappointing in not making sure that these provisions made it so. While there are some things in the IRA that are going to help people and improve access to medicines, for people with diabetes, we’re not going to see real, meaningful change. We’re not going to see an end to insulin rationing. [beeping in background] We’re not going to see an end to complications and people struggling and suffering because of the cost.
DeRay Mckesson: Now let me repeat back what what I think you said the ideal is. The ideal is actually if there’s like a legitimate cap on the cost regardless of insurance type. Right?
Elizabeth Pfiester: Absolutely.
DeRay Mckesson: Uninsured, insured da da da. What people are proposing is a cap on the co-pay, which means that you have to have insurance so there’s a deductible and that there’s even something to have a co-pay for. That. That’s just before. Now, what would you say to people who are like, well, how can the pharmaceutical companies afford that? Like how how dare you make a just straight up price cap? Given that like this is a free market, there are companies like who are you to tell them that even for uninsured people that there has to be a cap? Is there precedent for this? Is this like the first time we’ve ever done this? Like, what would you say to those people?
Elizabeth Pfiester: Yeah, that’s a great question. I think what one of the things that I would say is that we can see, again, all those tactics that I talked about that Pharma uses, for example, the patient assistance programs that they put out. Many of those patient assistance programs provide insulin to the uninsured for about $35. So they are essentially weaving their web to to find ways where they can provide insulin at that cost. But they get benefits so they get tax breaks, for example, for doing these kinds of things. But they can and they have made insulin cheaper. They have made insulin more affordable. So they can afford to do that. They they try to do it in ways that make them look benevolent and that give them some tax breaks. But my response to that is they can and they have. And so they should be forced to do that across the board. And they will still, I’m sure, be making many millions or billions in profit. I don’t think um they’re going to be hugely dented and, you know, put themselves out of business or be put out of business through this kind of legislation.
DeRay Mckesson: Now, what about I saw that um the governor of California said that they the state is just going to start producing insulin themselves. Is that a real thing? Is that a PR stunt? Is this a what do we make of that?
Elizabeth Pfiester: Yeah, well, you make a good point. When you said, you know, insulin is is in the media and has been like in the space. And I do think that and I hope that that’s down to the advocacy of of our advocates around the world that are shouting about this injustice and and that therefore we have seen things like California saying that they’re essentially going to publicly produce insulin. There is some positive and there is hope from this. I think ultimately, again, in my opinion, we need to truly hold the pharmaceutical industry accountable and this is moving in that direction by adding more diversity to the insulin market. There are only three main insulin manufacturers um that dominate more than 90% of the market. So adding in another player and creating insulin that will be much more affordable is really, really exciting and promising. And it’s a measure that we’ve seen. You know, there are places where water or other commodities are are put out and made in the public sphere. So there is like there is some precedent. Not with insulin, but I think it is absolutely promising. And I think I can say and speak for again myself and the advocates that that advocate with T1international. We’re still going to keep advocating for other accountability measures, things like a price cap. Um, things like transparency from the industry. Because while these things are promising, I don’t know if you’ve also heard of Civica RX, which is uh a company that also has said that they’re going to make insulin at a nonprofit rate, so they’re going to exist to only produce it, um to add another player into the market and decide to make it very, very cheap. Again, promising exciting to see these moves. But to to your point of of PR, I think it’s interesting to see that some who are involved in some of those initiatives might have some interest in showing, making a show that they’re trying to fix the problem and they’re not quick enough solutions. As I’ve said, people are dying. So we need something that can can change things tomorrow, yesterday. And these initiatives are many, many years in the making. If they also don’t get stalled by the pharmaceutical industry. So one of the tactics from the pharmaceutical industry is to essentially sue a company and say, oh, you’re infringing on our patent, so you need to stop what you’re doing. Um whether that’s true or not, it doesn’t always matter, but it stalls progress. So the long and short answer is it’s exciting to see these things, and I don’t think it’s going to fix things soon enough.
DeRay Mckesson: Now what happens in the UK? How do they deal with the insulin issue?
Elizabeth Pfiester: In the UK? Part of why costs are much more affordable, even to the government who pays for my insulin and supplies is because they can negotiate. They they have a body called NICE that um the National Institute, that essentially says okay, we have this many people in our population that need insulin, we think we’ll need this much. And they have a conversation and a negotiation with pharmaceutical companies to purchase insulin in bulk at a more affordable rate. I, I don’t want to quote this because I haven’t checked the numbers super recently, but I think it’s about £16, which is close to $20. A vial for insulin is what they get through those negotiations. I may be slightly off, but as as you can tell, it’s it’s way more affordable than that $300 list price. Um so because because the system is nationalized, they can do things like that. And again, myself, as a person living with diabetes, my experience is that the stress of having to deal with insurance companies and save money and budget to make sure that I can afford all of my diabetes supplies and care. I just don’t have to do that here. And that’s just a massive game changer.
DeRay Mckesson: What have you found to be like why are the people in the left not rallying around this right? You said earlier that, you know, the right is obviously really bad at this, but that sometimes people on the left aren’t is on board. Is that do you think it’s that they don’t know? Do you think that they don’t really understand, do they? The pharma people are better lobbyists? Like what’s the things? Since you’re actually an insider.
Elizabeth Pfiester: That’s a really, really good question. I don’t I don’t know if I have a clear answer, but I do I do think one of the last things you said about lobbying dollars that’s real and that cuts across party lines. Is people are getting campaign contributions from these companies everywhere and they don’t want to stop receiving those. I also think I know that folks in our community often talk about just feeling like they’re being used as political pawns. I think I think there are some good intentions. I think that this issue has stayed in the in the spotlight for a long time. And so there is pressure on politicians to do something about it. But I also think that they don’t spend the time to educate themselves about things like a co-pay cap versus a price cap, for example. Um so I think it’s a mixture of that. I think there is still, as I said, a lot of a lot of stigma. We still hear all the time about people with type one or type two with diabetes, which is inaccurate for both that, oh, you just need to lose weight and then um you won’t need insulin anymore. And that’s not how it works for any type of diabetes. Um having, living a healthy life can always improve someone’s health, but uh you know the stigma goes back from the beginning times when diabetes was first identified, and it ties very deeply with racism and our broken health care system, which damages particular communities more than others. So I think I think we have a lot more work cut out for us and we’re going to keep educating and keep shouting about why a price cap is essential. And on a global level, we’re also doing work um to to try to reduce insulin costs. And it’s very different in every country. But we have an amazing community of folks who rally together and keep shouting about this. And we’ve seen some really exciting things like the World Health Organization um added long acting analog insulin to their essential medicines list. And that was down to ours and other advocates cry that this is that this is essential and it needs to be available to everyone. So um it’s you know, there is there’s hope in the US, but a lot more work to do and and same same globally. We need to we need to create a world where everyone can access and afford their insulin. And right now, one out of two people worldwide can’t access or afford their insulin, which is a pretty staggering thought.
DeRay Mckesson: Now I learned, I didn’t know the difference between a price cap and a um and a co-pay cap and until this call I hadn’t even heard people talk about that. Are there any other misconceptions? You talked about the stigma. You talked about the price cap. Are there any other things that you think are limiting factors for people just being like, okay, obviously this is clear. Like, what other stuff do we just need to clear up?
Elizabeth Pfiester: Yeah, I think one thing that really frustrates me is, is the media and I’m sure this happens for other health conditions and I try to be more aware of it now that I’ve experienced it so much. But you’ll just you’ll just see the media talking about about diabetes so often as the butt of a joke and saying, oh, this person too much ice cream, and now they have diabetes or um even things like, oh, they’re having a seizure, they need to take their insulin, which is completely wrong. If you give someone who’s having a seizure insulin, they would die faster um because when you have a low blood sugar, you need to eat sugar and bring that bring that blood sugar up. So just just a lot of misunderstandings and a lot of sort of assumptions that that people with diabetes look a certain way and are a certain way that, again, I think may prevent sort of political will or or just the general population from from getting on board. I’m trying to think if there’s others, um it’s just such a complex issue. You know, um we saw with with the HIV and AIDS movement, the stigma that was attached. And we take a lot of inspiration from those activists who were able to lower the price of antiretroviral drugs um through through fierce advocacy and, you know, making big, bold statements and applying pressure on many, many levels. And I think just just knowing how stigmatized that condition was and still is, um we have a lot of a lot of learnings from that, and we’ve managed to get a lot of media attention. But there is there’s still always going to be that battle of a lack of understanding or a kind of conflation of the issues.
DeRay Mckesson: I will say one of the things that I think is real is that there are people who are activists and not activists and people impacted by diabetes who just cannot imagine that there would be a cap like I think that this is like some of your hard work is like introducing the idea as like a legitimate idea, you know what I mean?
Elizabeth Pfiester: Yeah.
DeRay Mckesson: Because you just get so used to navigating like a crazy system and you’re like, well, this is sort of what it is, and you’ve done it your whole life and you needed it that like pitching this as like a possible real thing, I think does seem fanciful to a lot of people. Do you know what I mean?
Elizabeth Pfiester: Mmm. Yeah, I do. I do. And I think, yeah, that has its pros and cons because again, it feels like a very big uphill battle. But I also think along along the way, again, there is we build this community and we have seen, you know, from when I started doing this way back in 2013 to where we are now, we just have such a community of people who even even though we haven’t gotten that price cap yet, we’re more educated, we’re more able to talk about and bring others into the movement. And that’s just such a huge part. You know, as we know of of movement building and of change making, is getting more folks part of this community and feeling like maybe maybe that price cap isn’t going to change their life tomorrow, but they have a community of people where we can signpost them to resources and talk about how we navigated it all together. As we keep pushing for this potentially fanciful, but I still will always believe totally achievable goal.
DeRay Mckesson: You know and I say fanciful in the sense of like so much. And I think of this with the police, but like helping people understand this is like a real legitimate thing, like not crazy, totally real. It’s like–
Elizabeth Pfiester: Yeah.
DeRay Mckesson: –Not fanciful. This is like, yes. And it’s like this is actually the bare minimum of what you deserve. Like, you actually deserve free, right?
Elizabeth Pfiester: Right.
DeRay Mckesson: 35 is a concession, you know.
Elizabeth Pfiester: Right. Thank you yes.
DeRay Mckesson: And like, you know, I think about how I would tell my aunt that or like how I would like I would have to pitch it to them. Like, do you know they’re overcharging you? Do you know that like, do you know that other countries this is like $7 or like just to like, help reframe their mind to to realize that they’re getting screwed, you know what I mean?
Elizabeth Pfiester: Yes, yes. Because you know, the other, it happens the other way to me here, living in the UK, where uh I explained to people who pay nothing for their insulin and never have that if I go home to the States and I urgently need a vial, I’m paying that multiple hundred dollar price tag and they just can’t wrap their heads around it because they’ve grown up in a system where health is viewed as a human right. And to to imagine that anyone would take that away is just like cannot comprehend. And then and then in the States, it’s just it’s just so depressing to see that health is not seen as a human right. And, you know, we get people on our social media pages all the time saying that access to insulin isn’t a human right, which I find, I find really interesting because people would fight to their right for oxygen or water, which is as essential as insulin is for us. But yet, um don’t want to think that medications should be affordable.
DeRay Mckesson: Is there like a reading that people can do, or is it like a site that people can visit to learn more and to stay up to date and to just, like, get up to speed and share things that they didn’t know before?
Elizabeth Pfiester: Yeah, I would love for folks to visit T1International.com. Um so that is really a place where we have lots of individual stories. So like you were saying, if you want someone to sort of be able to understand this and sort of get a grip on the issues. You can read both personal stories of people around the world and people in the states of what what they live with and how they’ve become advocates as well as facts. So we have some great things that are like. Eight Reasons Why Insulin is So Expensive. Or here’s how you can combat some of the key talking points the pharmaceutical industry will share with you, and then folks can get involved. We have 41 state chapters across the US, grassroots led by people living with and impacted by diabetes, and they are pushing for state level change, which, um you know, we want that federal change. But statewide you can start to set a precedent and help people uh more quickly sometimes. And so folks are advocating there on the state level and you can get involved in your state chapter and you can get involved in lots of other ways as well. Again, whether it’s just educating yourself or sort of joining part of the movement as a volunteer, um there’s tons of information. So again, it’s T1International.com and we have a 501c3 entity in the US as well as as a UK entity. So we’ve got folks all around the world who can support you to get involved wherever you are.
DeRay Mckesson: You know, what is what is the state level change that can happen? We only talked about California. What else can people do?
Elizabeth Pfiester: Yes. So one example is something called Alex Law. Alex Smith died when he aged out of his parent’s insurance and couldn’t afford his insulin. Nicole Smith Holt is our charity ambassador and she has continued to tell the story of the loss of her son and to get involved with other folks who have lost loved ones due to rationing. And she has been a fierce advocate with others in Minnesota to pass legislation again called the Alex Smith Law, which essentially gives emergency insulin access to those who need it and starts to hold the pharmaceutical industry accountable by making them pay for that. Um so that’s been really, really exciting legislation that other states have started to take on as well. The the most interesting and telling part of that is that the pharmaceutical industry promised that they wouldn’t fight this law if it passed. And the day that it went into action, the industry filed the lawsuit to try to get it overturned. Um so it just shows us that that this legislation is making a difference in changing laws because of how hard the industry is fighting to try to get it overturned. So that process is actually still ongoing with with many backs and forths of of appeals to try to repeal the law itself. But currently it is it is enacted and people are accessing lifesaving medicine now in real time um. So that is you know, it could set a precedent for the federal level or we’ve seen other states like Colorado and Maine um who are pushing that forward, too. So uh that’s just one example. But there are others.
DeRay Mckesson: Okay. So there are a couple of questions that we ask everybody. The first is, what do you say to people who feel like they’ve done everything? They call, they email, they testify, they listen to you, they listen to me, they visited your website. They have like stood in the streets and still nothing is changing in their world. What do you say to those people?
Elizabeth Pfiester: I say [sigh] that that feeling is, I think, common and everybody feels that way. But the only way that things have changed is, is those people that keep going. And we’ve seen that throughout history. So take a break. Take care of yourself when you need to. That’s a big a big thing for us is we don’t you know, everybody that we work with is impacted, whether they live with diabetes themself or love someone with diabetes. It’s it’s a 24 hour day, seven day a week job just to do diabetes on top of everything else you have in your life and then to advocate. So take care of yourself. Make sure you’re not putting yourself in a position where you can’t advocate long term and then stay with this community. Because everyone in this community has a period in time where they feel like they’ve done everything and nothing’s going to change. But then you hear the story of our chapter in India who is starting to do educational activities and surveys and have seen progress in some of their local regions. That’s why being a global organization is so cool and exciting because you can just hear these new perspectives. Some of them are really tough and challenging to hear, but there’s always folks who, in the midst of some of the most dire straits, are continuing to push forward. So I just really take inspiration from everyone, everyone in our community and sort of make sure that you take a break when when you can and when you’re able to, and then just keep looking to those sparks of hope.
DeRay Mckesson: Give us the site one more time.
Elizabeth Pfiester: T1International.com. So letter T, number one, international dot com.
DeRay Mckesson: Boom. Well, Elizabeth we learned a ton today. So the last question is, what’s a piece of advice that you’ve gotten over the years that’s stuck with you?
Elizabeth Pfiester: Something that I often give back out, so it must have stuck with me um, is that you can’t always see the impact of the calls you make, the standing in the street that you do. You can’t see that in the moment. Maybe not the day after, maybe not the week after. But it does make a difference, even though you can’t see it or sometimes feel it. And having seen those ripple effects even years later, again, because I’ve been doing this for a while now, um I think that’s that’s what we can hold on to. And just to keep reminding yourself that and reminding each other that every step you take it is having an impact, even if you can’t see it.
DeRay Mckesson: Well, here we go. I learned a lot more. I’m going to try to figure out what I can do to press my legislators. Does the site have a list of people that we need to convince or like, are there any people on the left that we need to sort of push and fight?
Elizabeth Pfiester: So we have uh we push out on our social medias really often, our action network pages which have actions and lists of folks and pretty easy ways where you can sort of you know send that letter or send that email. So um we’re kind of updating all that with all the federal things that have been changing. But but we post very regularly on all of our social media channels. All called @t1international. So if you follow those, you will get lots of action prompts.
DeRay Mckesson: Here we go! Well, keep us posted, we’ll be in the fight with you. And in our lifetime we will get a cap or free.
Elizabeth Pfiester: Yes, thank you. Thank you so much, DeRay. I really appreciate it. [music break]
DeRay Mckesson: Well, that’s it. Thanks so much for tuning into Pod Save The People this week. Tell your friends to check it out. Make sure to rate it wherever you get your podcasts, whether it’s Apple Podcasts or somewhere else. And we will see you next week. Pod Save The People was a production of Crooked Media. It’s produced by AJ Moultrié and mixed by Veronica Simonetti and executive produced by me. Special thanks to our weekly contributors Kaya Henderson, De’Ara Balenger and Myles Johnson.