All's Well That Ends Sickle Cell | Crooked Media
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December 10, 2023
What A Day
All's Well That Ends Sickle Cell

In This Episode

  • The Texas Supreme Court temporarily halted the abortion procedure for Kate Cox, a 31-year-old pregnant woman who was granted the country’s first court-ordered abortion last week since the fall of Roe. The justices said Cox’s procedure is on pause while they review her restraining order, which meant to protect her and her doctors from the state’s anti-abortion measures.
  • Sickle cell disease is a painful condition that occurs more frequently in Black people, and last Friday the FDA approved two new revolutionary treatments for it. They both use technology to edit a person’s DNA to remove the gene that causes the disease.
  • And in headlines: the University of Pennsylvania’s president resigned after a Congressional hearing about antisemitism on campus, Donald Trump will not testify on Monday at the civil fraud trial against him in New York, and Ron DeSantis’s wife Casey erroneously suggested that everyone in the country should participate in the upcoming Iowa Caucus.

 

Show Notes:

 

 

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TRANSCRIPT

 

Juanita Tolliver: It’s Monday, December 11th. I’m Juanita Tolliver.

 

Josie Duffy Rice: And I’m Josie Duffy Rice and this is What a Day, the pod that promises that we really don’t like to talk about George Santos. 

 

Juanita Tolliver: But y’all, his videos on cameo. No shortage of material here. 

 

[clip of George Santos] I’m so proud of you for coming out as a furry. 

 

Josie Duffy Rice: Wow. This is the American dream. This is why people go to Congress so that one day they too, can be making videos at $500 a pop for furries. 

 

Juanita Tolliver: There you go. [music break] On today’s show, the FDA approved a new DNA altering treatment for sickle cell disease. Plus, Ron DeSantis’s wife, Casey, asks people from all over to participate in the upcoming Iowa caucuses. I’m pretty sure that’s not how it works because that’s giving voter fraud. And we’ll explain. 

 

Josie Duffy Rice: But first, on Friday, we told you about Kate Cox, the pregnant 31 year old in Texas who was granted the first court ordered abortion since the fall of Roe. But unfortunately, we have an update on that case and it is not good. On Friday night, the Texas Supreme Court temporarily halted the order from the lower court, meaning Cox was not permitted to get the abortion that she was seeking. 

 

Juanita Tolliver: All I keep thinking of is how harmful this is mentally, emotionally and physically for her. But remind us, this abortion was medically necessary for Cox and her family, right? 

 

Josie Duffy Rice: This is the quintessential medical necessity case, basically. Cox learned that her unborn child has Trisomy 18, which is a genetic condition that almost always leads to miscarriage, stillbirth or the death of the child very early in their lives. And in Cox’s case, her fetus is expected to live at most a week. So carrying this pregnancy to term could affect her health. It could compromise her ability to have children later as well, according to her doctors. So she was seeking an abortion, but she was really unclear on whether getting one was going to lead to criminal or civil consequences. So last Thursday, things seemed good, as we reported. She was granted an emergency temporary restraining order that in theory, would allow her to have an abortion and would protect her from any penalties. This was really incredible news for her. She was very worried about her health and the health of her baby. Here she is talking about it last week to NBC after her first victory. But before this latest development. 

 

[clip of Kate Cox] I think forcing me to continue the pregnancy and the pain and suffering put me through the risks of continuing the pregnancy, the risks, childbirth, again, especially given how my last two went. I think it’s cruel. 

 

Juanita Tolliver: Oh, my gosh. Like the trauma that she’s experiencing. And as she mentioned, the pain, the suffering and the cruelty of it all, it just it’s sickening. So–

 

Josie Duffy Rice: It is. 

 

Juanita Tolliver: How and why did that first ruling get overruled? 

 

Josie Duffy Rice: The answer is Ken Paxton, the disgraced Texas attorney general. So he got involved late last week when he sent a letter to three hospitals in Houston where Cox’s doctor practices. Paxton threatened legal action if these hospitals were to perform the termination of Cox’s pregnancy. He said the temporary order would not, quote, “insulate hospitals, doctors or anyone else from civil and criminal liability for violating Texas’ abortion laws.” I want to be really clear. Like it’s not clear this does violate Texas’ abortion laws, right? 

 

Juanita Tolliver: Right. 

 

Josie Duffy Rice: That’s kind of the point. Like we don’t know because Texas abortion laws are pretty vague. And Paxton also filed a petition with Texas’ Supreme Court requesting that they intervene in this case. And so devastatingly, he was somewhat successful because as I mentioned earlier, on Friday night, the Texas Supreme Court temporarily halted the order from the lower court. 

 

Juanita Tolliver: And all the while, Cox has to continue with this unviable pregnancy. 

 

Josie Duffy Rice: Yeah. 

 

Juanita Tolliver: Wow. So what was the reasoning from the court on this? 

 

Josie Duffy Rice: So basically, this is more of a procedural thing than a substantive thing. It’s basically a pause for the moment. It’s not a ruling on the merits. The court is only going to rule on the temporary restraining order itself and whether it truly shields Cox and her doctors from the state’s anti-abortion laws. So that has to do with, you know, statute of limitations. It’s definitely more of kind of a procedural question. And in other words, they did not decide that Cox can’t get an abortion or that the lower court’s ruling was wrong or illegal. And so they’re basically saying, we’ll decide on that later. But in the meantime, you can’t get the abortion that you were previously told you are legally permitted to obtain. 

 

Juanita Tolliver: Ugh. 

 

Josie Duffy Rice: Yeah we’re pausing. You can’t do anything yet. So, again, a pause isn’t a final decision. But of course, for a woman who is 20 weeks pregnant, a pause is kind of a final decision in and of itself. This is exactly what Paxton wants too. He wants–

 

Juanita Tolliver: Yeah. 

 

Josie Duffy Rice: It to get to a point where any elective action would be considered illegal regardless of the circumstances. And that’s where this is headed. 

 

Juanita Tolliver: And it’s not just Paxton. This is what Republicans generally want across the country when–

 

Josie Duffy Rice: 100%. 

 

Juanita Tolliver: –they are calling for full abortion bans like this is what they want. 

 

Josie Duffy Rice: Yeah. And when they are promising, oh, if the woman’s health is at risk or if, you know the pregnancy is non-viable, that’s a different story. That’s not true. 

 

Juanita Tolliver: Nope. 

 

Josie Duffy Rice: This is a example of someone who had a wanted pregnancy, who never imagined themselves being in this situation. Who is concerned that this pregnancy is going to limit their ability to have pregnancies in the future. 

 

Juanita Tolliver: Right. 

 

Josie Duffy Rice: These pro-life people are basically putting at risk the life of the fetus, which is non-viable, the life of the mother and the life of any other future babies that she may be able to have. It is just about control and everything that they said was in bad faith. 

 

Juanita Tolliver: And this is why we keep talking about abortion rights. 

 

Josie Duffy Rice: Yep. 

 

Juanita Tolliver: This is why it will still be an issue in 2024. 

 

Josie Duffy Rice: Yep. 

 

Juanita Tolliver: Just like it has been in every other election cycle. So y’all go vote. 

 

Josie Duffy Rice: It’ll be an issue every single election cycle until Roe is reinstated. 

 

Juanita Tolliver: Right. Well. Thanks for that horrible update out of Texas, Josie. Now, I want to do a hard pivot to some positive science news. 

 

Josie Duffy Rice: Love good news. 

 

Juanita Tolliver: So last Friday, the Food and Drug Administration approved two new treatments for sickle cell disease, a disease that disproportionately impacts Black people in the United States. 

 

Josie Duffy Rice: Yeah, this is huge news. I feel like if you’re Black in America, you definitely know someone who has been affected by sickle cell. 

 

Juanita Tolliver: Absolutely. 

 

Josie Duffy Rice: So this is really, really big news. I know it’s brand new science, but what do we know about the treatments so far? 

 

Juanita Tolliver: So the two new treatments are called Casgevy and Lyfgenia , and they are the first cell based gene therapies for treating sickle cell disease in patients aged 12 and older. And both treatments work by genetically modifying a patient’s own stem cells. Casgevy is the first medicine to be approved in the US that uses the gene editing tool Crispr, and it removed the need for a donor as it edits the DNA to remove the gene that causes the disease. Lyfgenia works by permanently adding a gene to the patient’s stem cells. In both treatments, once the stem cells are modified, they’re given back as a one time single dose infusion as part of a stem cell transplant. Of course, there are still questions about the long term impact of these treatments as the clinical trials only ran for two years. But before these treatments were approved, the only cure for sickle cell was a bone marrow transplant from a donor. So this definitely opens the door much wider in terms of viable options for patients. 

 

Josie Duffy Rice: Yeah, this is really, really massive news. And I think a lot of people are not familiar with what sickle cell does to a person. So can you describe what it is exactly and how it impacts people and the enormous pain it causes? 

 

Juanita Tolliver: Yeah. Sickle cell disease is a group of inherited blood disorders that prompts a mutation in the red blood cells. And as a result, those cells develop a sickle like shape with sharp edges. Now, those edges don’t allow the cells to flow freely in blood vessels, and that limits oxygen being delivered to bodily tissue and causes severe pain, organ damage and strokes for people living with the disease. Here’s how one of the 46 clinical trial participants described her physical pain with sickle cell and the relief she felt following treatment. Here she is talking to NBC. Take a listen. 

 

[clip of Sickle Cell trial participant] It’s consistent. It’s sharp and it, it’s crippling. 

 

[clip of NBC news reporter] And that could be where, for example, on your body? 

 

[clip of Sickle Cell trial participant] I’ve had it in my knees, my arm, anywhere there is a joint. 

 

[clip of NBC news reporter] Now, [?] runs and works out in the gym, things she always wanted to do but never could do before. It’s changed your life. 

 

[clip of Sickle Cell trial participant] It’s changed. Yeah. 

 

[clip of NBC news reporter] You said it’s giving you life. 

 

[clip of Sickle Cell trial participant] It’s given me life. Yeah. 

 

Juanita Tolliver: Such such a sad reality for everybody existing with sickle cell disease. Like and this was a 29 year old person who was part of the clinical trial. So I can’t imagine how it is for people older and advancing in age. Living with this is fully debilitating. 

 

Josie Duffy Rice: Yeah, absolutely. 

 

Juanita Tolliver: Sadly, this blood disorder affects more than 100,000 people in the United States, mostly Black people, and 20 million people worldwide. About 1 in 13 Black or African-American babies are born with the sickle cell trait and about one in every 365 Black or African-American babies are born with sickle cell disease. So this cure is going to be a game changer for everyone struggling with the pain of sickle cell. 

 

Josie Duffy Rice: Obviously, this is massive news, but we live in America where new medicine is not always easy to access. So what about this one? Like who will be able to get this? Do this treatment? 

 

Juanita Tolliver: Yeah, it’s unclear so far. These new treatments come with a big price tag of $2.2 to $3.1 million dollars per patient. Yes, per patient. And the cost doesn’t even include all of the other components of treatment, like the costs for the hospital stay. The hope is that insurance companies will cover a large portion of the cost as commercial insurance companies pay on average $1.7 million dollars over a patient’s lifetime for the current treatment of sickle cell disease. And I think that’s what you were describing before we were recording, Josie. Like, if the cost benefit analysis weighs out then insurance companies may cover it, right? 

 

Josie Duffy Rice: Right. But of course, their cost benefit analysis is really limited, right? It doesn’t actually consider, like you said, pain and suffering. It doesn’t consider the cost of living with this level of pain it just–

 

Juanita Tolliver: Right. 

 

Josie Duffy Rice: Basically, it’s this very narrow window in the cost of treatment. 

 

Juanita Tolliver: Yeah. In addition to the costs, there are a lot of other hoops that patients will have to jump through to get the treatment, including the limited number of medical centers that will be authorized to provide the treatment. The requirement that each patient’s cells be edited or have a gene added individually. And not everyone will be able to tolerate the pain associated with the procedure. The FDA estimates that about 20,000 patients who are 12 and older and have had episodes of debilitating pain will be eligible for the therapies. Of course, we’ll keep following this scientific breakthrough, but that’s the latest for now. We’ll be back after these ads. [music break]

 

[AD BREAK]

 

Josie Duffy Rice: Now let’s wrap up with some headlines. 

 

[sung] Headlines. 

 

Josie Duffy Rice: First, we have some updates from the war in Gaza. Ground assaults by the Israeli military killed nearly 300 Palestinians in a 24 hour period over the weekend. Over the last several days, some really horrifying photos have circulated on social media. Palestinians being rounded up by Israeli forces in Gaza City, stripped and blindfolded. Al Jazeera reported yesterday that many of the prisoners who were later released said that they were tortured while detained. And a growing concern among human rights groups is the lack of food and severe starvation that face Gazans. The World Food Program reported last week that nine out of ten people in northern Gaza are going a full day and night without eating any food consistently. Meanwhile, across the border, Egyptians started voting yesterday in a presidential election set to allow Abdel Fattah al-Sisi a third term in his seat. This comes as inflation has been at a staggering 35% under al-Sisi’s administration. And pressure is mounting at the Rafah border crossing for more aid to come into Gaza. Elsewhere on Friday, the US vetoed a United Nations resolution backed by the vast majority of the Security Council that demanded an immediate ceasefire in Gaza. So if there are still any questions about the US government’s involvement in this ongoing humanitarian crisis, the fact that they were the only veto should be a very, very, very clear answer. 

 

Juanita Tolliver: Elizabeth McGill, the president of the University of Pennsylvania, resigned on Saturday after receiving heavy backlash over her testimony before Congress. Scott Bok, chair of the school’s board of trustees, announced the news on Saturday before resigning from his own position shortly after. In a statement, he wrote, quote, “I concluded that for me, now is the right time to depart.” This comes after McGill, along with the presidents of Harvard and MIT, were questioned by lawmakers about their response to students facing antisemitism on college campuses amid the war in Gaza. You’ll remember that we covered the contentious hearing on the show last week where McGill appeared to dodge questions posed to her by Republican Representative Elise Stefanik. 

 

[clip of Elise Stefanik] At Penn does calling for the genocide of Jews violate Penn’s rules or code of conduct? Yes or no? 

 

[clip of Elizabeth McGill] If the speech turns into conduct, it can be harassment. Yes. 

 

[clip of Elise Stefanik] I am asking specifically calling for the genocide of Jews. Does that constitute bullying or harassment? Yes or no. 

 

[clip of Elizabeth McGill] If the speech becomes if the speech becomes conduct, it can be harassment. Yes. 

 

Juanita Tolliver: Yikes. The sound bite went viral over the weekend with McGill drawing criticism from even the White House for her answer. A Biden spokesperson wrote, quote, “It’s unbelievable that this needs to be said. Calls for genocide are monstrous and antithetical to everything we represent as a country.” According to U. Penn’s Board of Trustees, McGill will remain a tenured faculty member of the school’s law department. 

 

Josie Duffy Rice: Starting today and for the next eight years. Federal officials cannot separate migrant children from their parents just because they crossed the border illegally. This comes because of a settlement approved by a federal judge last Friday in a case between the Justice Department and migrant families represented by the ACLU. Back in 2018, then President Trump enacted a notorious separation policy as a way to deter immigration. But it sparked a humanitarian crisis with thousands of children ripped away from their families. Five years later, hundreds of kids still haven’t been reunited. And that’s in part because of poor tracking by the Trump administration. Trump said recently that he would restart the program again if he’s reelected. Because of the settlement, however, any similar policy would be banned until December 2031. 

 

Juanita Tolliver: Surprise, surprise. Former President Donald Trump will not take the stand today to defend himself in his own New York civil fraud trial. That is, of course, the $250 million dollar lawsuit filed by New York Attorney General Letitia James that began two months ago. The suit claims that the former president and his family intentionally overvalued their business assets to get bank loans they wouldn’t have otherwise qualified for. And it seeks to ban the Trump Organization from doing business in the state of New York. Trump already testified in the case last month, and he was supposed to be one of the last witnesses called by the defense this week. But the former president took to everyone’s least favorite social media platform, Truth Social. Don’t know her. Never heard of her. On Sunday, to cancel his appearance with less than 24 hours notice. He wrote in all caps, quote, “I have already testified to everything and have nothing more to say other than this is a complete and total election interference.” Okay, Biden campaign, exclamation point, witch hunt. You know, I feel like my English teacher would have like had a field day with this, like what? All these fragmented thoughts, ugh. This week marks the final week of testimony in his case. And just as a reminder, folks, this is not about whether or not he committed financial fraud because the court already decided that. This is just about how much money his business will have to pay and whether or not he’ll be able to do any business in New York. So there’s that. 

 

Josie Duffy Rice: I have to say, one of my favorite tweets of the year came a few weeks ago when someone said Trump discovering semicolons is like raptors learning to open doors. [laughter] Yeah. 

 

Juanita Tolliver: Yeah. 

 

Josie Duffy Rice: I truly could not agree more. It is that scene in Jurassic Park where we’re like, Oh God. 

 

Juanita Tolliver: Yes. 

 

Josie Duffy Rice: What’s next? And finally, more from the Grinch who stole, I don’t know, basic human rights from Floridians. 

 

Juanita Tolliver: Yeah that works. 

 

Josie Duffy Rice: Ron and first lady of Florida, Casey DeSantis were on Fox News together on Friday, and Casey made this truly absurd call out. So just for context, she was talking about this coalition of moms and grandmas who helped Ron get reelected as governor and Juanita, here it is.

 

[clip of Casey DeSantis] We’re asking all of these moms and grandmoms to come from wherever it might be, North Carolina, South Carolina, and to descend upon the state of Iowa to be a part of the caucus, because you do not have to be a resident of Iowa to be able to participate in the caucus. 

 

Juanita Tolliver: Ma’am, ma’am that’s voter fraud. [laughing]

 

Josie Duffy Rice: The actual voting, you have to live in Iowa to do that. Descend upon also feels very aliens to me. It’s giving like outer space invasion. 

 

Josie Duffy Rice: Yup. 

 

Josie Duffy Rice: Ron had to later clarify that Casey wasn’t saying that you could come from other states and vote, but like the fact that they needed to clarify. These are the same people that claim that, like, what, 7 katrillion, quote unquote, “illegals” came to America just to–

 

Juanita Tolliver: Yeah. 

 

Josie Duffy Rice: –vote for Joe Biden or whatever they were saying. I mean, it’s like so crazy. 

 

Juanita Tolliver: And the same people who literally created an election force of police to arrest people Like really? 

 

Josie Duffy Rice: Right. 

 

Juanita Tolliver: Really DeSantis family? 

 

Josie Duffy Rice: Right. The grandmas can come descend upon Iowa. 

 

Juanita Tolliver: It’s a mess. 

 

Josie Duffy Rice: Well, we know how civics education is these days in Florida so. 

 

Juanita Tolliver: Right. Right. Nonexistent. 

 

Josie Duffy Rice: So that’s super shocking. And those are the headlines. 

 

[AD BREAK] 

 

Juanita Tolliver: That’s all for today. If you like the show, make sure you subscribe. Leave a review, don’t commit voter fraud in Iowa, y’all. And tell your friends to listen. 

 

Josie Duffy Rice: And if you’re into reading and not just our shortlist for WAD person of the year like me, What a Day is also a nightly news letter. So check it out and subscribe at crooked.com/subscribe. I’m Josie Duffy Rice.

 

Juanita Tolliver: I’m Juanita Tolliver. 

 

[spoken together] And we promise to stop talking about George Santos. 

 

Josie Duffy Rice: I do not make that promise. 

 

Juanita Tolliver: I just hate that he’s able to earn money. 

 

Josie Duffy Rice: Every minute he’s on cameo is a minute he is not lobbying in Congress, which–

 

Juanita Tolliver: Maybe that’s the next thing our Discord friends should vote on. What we should get George Santos to say in a cameo. [laughing]

 

Josie Duffy Rice: Ugh. Because clearly, he’ll do pretty much anything for $500. 

 

Juanita Tolliver: Fully debase himself. Yes. 

 

Josie Duffy Rice: Yes, absolutely. Probably for less. [music break]

 

Juanita Tolliver: What a Day is a production of Crooked Media. It’s recorded and mixed by Bill Lancz. Our show’s producer is Itxy Quintanilla. Raven Yamamoto and Natalie Bettendorf are our associate producers. And our showrunner is Leo Duran. Our theme music is by Colin Gilliard and Kashaka.