What A Day - All's Well That Ends Sickle Cell

Episode Date: December 11, 2023

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 is 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:What A Day – YouTube – https://www.youtube.com/@whatadaypodcastFollow us on Instagram – https://www.instagram.com/crookedmedia/For a transcript of this episode, please visit crooked.com/whataday

It's Monday, December 11th. I'm Juanita Tolliver. 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. But y'all, his videos on Cameo, no shortage of material here. I'm so proud of you for coming out as a furry. 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. There you go. On today's show, the FDA approved a new DNA-altering treatment for sickle cell disease. Plus, Ron DeSantis' wife, Casey, asked 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.

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. 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? This is a 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. I think forcing me to continue the pregnancy and the pain and suffering put me through the risks of continuing the pregnancy, the risk of childbirth again, especially given how my last two went. I think it's cruel. 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 how and why did that first ruling get overruled? 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's abortion laws. I want to be really clear, like, it's not clear this does violate Texas's abortion laws, right? Right. 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's 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. And all the while, Cox has to continue with this unviable pregnancy.

Wow. So what was the reasoning from the court on this? 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 law. 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. Instead, 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 were legally permitted to obtain yet. 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 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. And it's not just Paxton. This is what Republicans generally want across the country when they are calling for full abortion bans. Like, this is what they want.

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. Nope. 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. Right. 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. And this is why we keep talking about abortion rights. This is why it will still be an issue in 2024, just like it has been in every other election cycle. So y'all go vote. It'll be an issue every single election cycle until Roe is reinstated. Right. Well, thanks for that horrible update out of Texas, Josie. Now I want to do a hard pivot to some positive science news. Love good news. 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. 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. Absolutely. This is really, really big news. I know it's brand new science, but what do we know about the treatments so far? So the two new treatments are called Casgevi and Livgenia, 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. Casgevi is the first medicine to be approved in the U.S. 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. Livgenia works by permanently adding a gene to the patient's stem cells. In both treatments, once the stem cells are modified, they're giving 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 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. 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? 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. It's consistent, it's sharp,

and it's crippling. And that could be where, for example, on your body? I've had it in my knees, my arm, anywhere there's a joint. Now Larray runs and works out in the gym, things she always wanted to do but never could do before. It's changed your life. It's changed, yeah. You said it's given you life. It's given me life, yeah. Such, such a sad reality for everybody existing with sickle cell disease. 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. It's fully debilitating. Yeah, absolutely. Sadly, this blood disorder affects more than 100,000 people in the United States, mostly black people, and 20 million people worldwide. About one in 13 black or African-American babies are born with 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. 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? 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 cost 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? 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 basically is this very narrow window into cost of treatment. Yeah. In addition to the cost, 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. Now let's wrap up with some headlines. Headlines. 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 of 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 base Gazans. The World Food Program reported last week that 9 out of 10 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 el-Sisi a third term in his seat. This comes as inflation has been at a staggering 35% under el-Sisi's administration and pressure is mounting at the Rafah border crossing for more aid to come into Gaza. Elsewhere on Friday, the U.S. 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 U.S. government's involvement in this ongoing

humanitarian crisis, the fact that they were the only veto should be a very, very, very clear answer. Elizabeth McGill, the president of the University of Pennsylvania, resigned on Saturday after receiving heavy backlash over her testimony before Congress. Scott Bach, 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 anti-Semitism 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. At Penn, does calling for the genocide of Jews violate Penn's rules or code of conduct? Yes or no? If the speech turns into conduct, it can be harassment. Yes. I am asking, specifically calling for the genocide of Jews, does that constitute bullying or harassment? Yes or no? If the speech becomes conduct, it can be harassment. Yes. Yikes. The soundbite 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 UPenn's board of trustees, McGill will remain a tenured faculty member of the school's law department. 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 re-elected. Because of this settlement, however, any similar policy would be banned until December 2031. 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 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. 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. I have to say one of my favorite tweets of the year came a few weeks ago and someone said, Trump discovering semicolons is like Raptors learning to open doors. And I truly could not agree more. It is that scene in Jurassic Park

where we're like, oh gosh. Yes. What's next? And finally, more from the Grinch who stole, I don't know, basic human rights from Floridians. Yeah, it worked. 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. 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. Man, that's voter fraud. 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. 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 seven quadrillion quote unquote illegals came to America just to

vote for Joe Biden or whatever they were saying. I mean, it's like so crazy. And the same people who literally created an election force of police to arrest people like really right really desantis family right the grandmas can come to descend upon iowa it's a mess well we know how civics education is these days in florida right right non-existent it's not super shocking and those are the headlines two more things before we go 2024 is a high stakes election year and there's so much to keep track of important voting deadlines volunteer shifts emergency therapy sign me up and apparently you still have to go to work and other stuff because being an adult is raggedy that's why crooked and vote save america created a 2024 planner to help you stay sane and organize

next year it's filled with important dates much needed motivation and 2024 planner to help you stay sane and organized next year. It's filled with important dates, much needed motivation and fun stuff to keep you from losing your mind. To get your planner, head to Cricut.com slash store right now. Also, there's one more election coming up before the end of the year, and that is the race for WOD's person of the year. Yeah. It's like the presidential election, except more important. We are asking you, our listeners, to nominate someone, a lawmaker, a celebrity, someone in the community, you name it, that made a huge impact in 2023. People who have signed up to be friends of the pod can head over to our Discord server to nominate and vote for your faves. We will share the results this Friday for our last show of the year. I think the person of the year should be the four hosts of the show who have made the most global impact of anybody, some may say.

If not us, our producers and editors. Yes, the people who make us sound good when we act a fool. Which is daily. Which is absolutely daily. 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. And if you're into reading and not just our shortlist for Wild Person of the Year, like me, What Today is also a nightly newsletter. So check it out and subscribe at Cricut.com slash subscribe. I'm Josie Duffy-Rypes. I'm Juanita Tolliver. And we promise to stop talking about George Santos. I'm Josie Duffy-Rypes. I'm Juanita Tolliver. And we promise to stop talking

about George Santos. I do not make that promise. I just hate that he's able to earn money. Every minute he's on Cameo is a minute he is not lobbying in Congress.

Maybe that's the next thing our Discord friends should vote on. What we should get George Santos to say in a Cameo. Because clearly he'll do pretty much anything for $500.

Fully debase himself, yes. Yes, absolutely. Probably for less. What a Day is a production of Crooked Media. It's recorded and mixed by Bill Lance. Our show's producer is Itzy 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.