Chat with Alexandra Petri and tell her your jokes
Alexandra's live chat with readers starts at 11 a.m. ET on Tuesday. Submit your questions now.
washingtonpost.com
The Pregnant Moms Trying to Get a Miracle Drug for Their Babies
At six months pregnant, Sonja Lee Finnegan flew from Switzerland to France to buy $20,000 worth of drugs from a person she had never met. The drug she was after, Trikafta, is legal in Switzerland and approved for cystic fibrosis, a rare genetic disease that fills the lungs with thick mucus. Finnegan could not get it from a doctor, because she herself does not have cystic fibrosis. But the baby she was carrying inside her does, and she wanted to start him on the Trikafta as early as possible—before he was even born.She felt so strongly because Trikafta is, without exaggeration, a miracle drug. As I wrote in the latest issue of this magazine, the daily pills have in the past five years transformed cystic fibrosis from a fatal disease into one where most patients can live an essentially normal life. Trikafta, a combination of three drugs, is not a cure, and it does not entirely reverse organ damage already caused by CF, but patients who grew up believing they would die young are instead saving for retirement. And children born with CF today can expect to live to a ripe old age, as long as they start the drugs early.How early is best? The drugs are officially approved for CF patients as young as 2, but a handful of enterprising mothers in the United States have gotten it prescribed off-label, to treat children diagnosed in the womb. Where doctors are more cautious, mothers are still pushing the limits of when to start the drugs. A mom in Canada sent her husband across the border to get Trikafta from someone in the United States. And Finnegan flew to France to meet a patient willing to sell their excess supply.Getting hold of Trikafta is in fact the hardest part. Parents told me of both insurance plans and obstetricians skeptical of a powerful new medication never tested in pregnant women—and not without reason. Trikafta has side effects, and it is new enough that not all of its ramifications are fully understood. But Finnegan pored over all the research she could find and decided that Trikafta was worth it. For $20,000, she bought a five-months supply—a relative bargain compared with Trikafta’s list price of $300,000-plus a year in the United States.To her, it was worth $20,000 for her son to avoid CF complications that can require major surgery at birth. It was worth $20,000 to prevent permanent damage to his organs that begins even in utero. She felt lucky she could afford it at all. Trikafta in pregnancy is not currently standard practice, but a miracle drug was out there. For her son, she would figure out a way to get it.The very first expecting moms on Trikafta were women with CF taking the drugs for themselves. Not long after the medication became available, in the fall of 2019, doctors noticed a baby boom in the CF community. Trikafta, it turns out, affects more than the lungs; it can also reverse the infertility common in women with CF, thought to be caused by unusually thick cervical mucus. (Most men with CF are born infertile, because the vas deferens, which carries sperm, never develops.)Experts worried at first about what Trikafta could do to developing fetuses. “People were like, ‘Don’t do this. We don’t know if it’s a teratogen’”—a substance that causes birth defects, says Ted Liou, the director of the adult-CF center at the University of Utah. (The CF doctors quoted in this article have all conducted clinical trials for or received speaking or consulting fees from Vertex, the manufacturer of Trikafta and several other drugs for CF.) That fear turned out to be unfounded: Hundreds of babies later, there has been, at least anecdotally, no uptick in severe birth defects.[Read: The cystic-fibrosis breakthrough that changed everything]Doctors started to see hints that Trikafta in utero could help babies with CF too. Of the hundreds of children born to mothers on Trikafta, only a few of the babies had CF themselves. This is because cystic fibrosis is a recessive disorder, meaning a mother with CF could have a child with CF only if the father also passed on a CF mutation. But the first documented case came to the attention of Christopher Fortner, the director of the CF center and pediatric-CF program at SUNY Upstate, who published a case report in 2021. Trikafta, he told me, made a clear difference for this baby girl.Cystic fibrosis is caused by an imbalance of salt and water in the body, and this affects developing organs even before birth. One in five infants with CF are born with an intestinal blockage caused by meconium—the normally sticky black stool of newborns—that has turned too thick and hard to pass. This is called meconium ileus, and in the worst cases, the intestines can rupture. Emergency surgery is necessary. Elsewhere in the body, the pancreas never forms properly with CF. “By the time they’re born, their pancreas is really not a functional organ,” Fortner said. Adults on Trikafta still have to take pancreatic enzymes with every meal, but there is some evidence that young children can gain pancreatic function if they begin the CF drugs early enough.When this baby girl was born, though, her meconium and her pancreas levels were normal from the very start; the standard newborn screening for CF would have never caught her. Fortner started her on enzymes as a precaution, but he stopped them after a week. She is 3 years old now and in preschool. Unlike generations of CF kids before her, she will never have to see the school nurse for enzymes every time she wants to eat. And she may never suffer the recurring lung infections that once made CF ultimately fatal. “The life she’s living,” Fortner said, “that was a whole lot like a cure to me.”Moms who do not have CF themselves have a much harder time getting their unborn children on Trikafta. In 2021, Yolanda Huffhines’s second child was diagnosed with CF prenatally, after a genetic test was recommended because Huffhines’s first child had cystic fibrosis. The diagnosis did not come as a shock this time, but she began to worry when the baby showed signs of meconium ileus while still in utero.After coming across a study in ferrets, Huffhines brought the idea of Trikafta to her doctors, who were not all enthused. Her obstetrician in particular was against it. But she found that CF doctors were more willing to weigh the well-known risks of cystic fibrosis—especially meconium ileus—against the less well-known risks of Trikafta. She asked Patrick Flume, who directs the adult-CF center at the Medical University of South Carolina, what he would do if it were his wife and child. He told her he would get Trikafta, and he agreed to help.Even with a sympathetic doctor, getting Trikafta wasn’t easy. First, Flume tried giving her a stash from a patient who no longer needed it, which was vetoed because his hospital couldn’t ensure that it had been properly stored. Then he asked the manufacturer, Vertex, which also said no. (The company told me it couldn’t provide Trikafta to anyone outside the drug’s official indications.) Finally, Flume told me, he decided to write a prescription as if the mother were his patient. When the insurance company asked if she had at least one copy of a specific CF mutation that Trikafta was developed for, he answered yes, truthfully. Because Huffhines is a carrier, she does have one copy. She started Trikafta at 32 weeks, and by the time her daughter was born, the meconium ileus had disappeared.Huffhines’s experience on Trikafta was not entirely smooth, though. The drugs come with some well-documented side effects, such as cataracts and liver damage, that have to be monitored, Flume told me, as with any new drug. Although Trikafta during pregnancy went fine for Huffhines, she started to experience unusual symptoms when she continued the medication so her daughter could get it through breast milk. Her usual migraines started going “through the roof,” and her scheduled blood work revealed that her liver enzymes had gone haywire—a sign of liver damage. She had to stop. Quitting Trikafta cold turkey could be harmful for newborns, though, which Huffines knew from studying the ferret research. (Suddenly withdrawing, Fortner told me, may cause pancreatitis.) She wondered: Was it possible to give a baby Trikafta directly? The pills would be too big, obviously, but her husband had scales for gunpowder that could weigh down to the milligram. She got a new one overnighted, and she began crushing the pills to give to her daughter—a technique that has since been taught to other moms. Her daughter did well. Huffhines’s doctors ended up publishing a case report in 2022—the first documenting a carrier of CF taking Trikafta. The long-term impacts of being on Trikafta in utero still need to be studied. The oldest child is still only 3. In adults, a small minority who have started Trikafta have reported sudden and severe anxiety, insomnia, depression, or other neuropsychiatric symptoms. The link is not fully proven or understood in adults, and it’s completely unexplored for fetal brain development. Elena Schneider-Futschik, a pharmacologist at the University of Melbourne, told me she is collaborating with researchers in the United Kingdom to get long-term developmental data on children exposed to Trikafta before birth. For now, she said, “we don’t know.”Fortner, who has heard from several pregnant mothers since his first case report, said he does not deter parents already set on getting Trikafta, but he does not, in all cases, push them toward it, either. Given the unknowns, he’s not sure that the benefits outweigh the risks. The clearest exceptions are cases of meconium ileus, in which doing nothing comes with its own costs. Flume told me about a recent patient whose baby was showing signs of an intestinal blockage and whose insurance initially denied Trikafta. The medication was eventually approved—but the mom went into labor the day she was due to start. Her baby needed emergency surgery. “This is something that did not need to happen,” he said.By the time Finnegan, in Switzerland, went looking for Trikafta last year, she had the earlier cases as models. Her baby wasn’t showing signs of meconium ileus, but she didn’t want to wait until he did, if he was going to end up down that path. Although her doctors were supportive, they could not get her Trikafta. That’s why she had to take unorthodox measures.She took her first pill in August, and her son was born in October with a working pancreas and no intestinal blockage. He is far too young for this to matter, but she hopes that the Trikafta allowed his vas deferens to develop normally too. Someday, he might want children of his own, and the impacts of getting Trikafta in utero might carry over into the next generation.Finnegan has been documenting her experience on social media, where she says her posts have inspired other pregnants moms to get on Trikafta for their unborn children. She knows of about 20 now, and after she got in touch with Schneider-Futschik, the researcher decided to survey these moms too. Meanwhile, Finnegan is sharing the stories of other moms as well, making note of details such as how long the mom was on Trikafta, what side effects she experienced, whether meconium ileus was resolved, and if insurance covered the drugs—a case series, of sorts, presented on Instagram. They are still few enough that every case is notable. In the future, though, all of this might become the utterly unremarkable standard of care.
theatlantic.com
NASA welcomes its newest class of astronauts after two-year training in Houston
The Johnson Space Center welcomed 10 American astronauts and two United Arab Emirates astronauts after the class completed two years of NASA training in Houston, Texas.
foxnews.com
Sophie Turner asks judge to ‘reactivate’ Joe Jonas divorce after failing to come to settlement
The Jonas Brothers member filed for divorce from the "Game of Thrones" alum in September 2023 after four years of marriage.
nypost.com
Social media influencer charged for her role in Jan. 6 attack
Isabella DeLuca allegedly helped steal a table used by rioters as a weapon against police.
cbsnews.com
Hong Kong Adopts Sweeping Security Laws, Bowing to Beijing
The legislation targets “external interference” and the theft of state secrets, with implications for businesses, journalists, civil servants and others.
nytimes.com
Footage captures moment cops fatally shoot gunman who targeted couple in NYC
Dramatic video footage captured the moment police gunned down a shooter who targeted a couple in Brooklyn Monday evening. A man and a woman are seen running away from the shooter at Remsen Avenue and East 57th Street in East Flatbush just as cops pull up to the scene in an unmarked car. A group...
nypost.com
Andy Cohen Is a Kate Middleton Truther
"Is this Princess Kate?" Cohen asked his 5 million Instagram followers, after footage of the royal was published online on Monday.
newsweek.com
Alaska Airlines plane’s windshield cracks while landing in latest drama for a Boeing jet
The flight from Washington DC was descending at the Portland International Airport when crew members noticed a small crack on the inner windshield, airline officials told KIRO.
nypost.com
The average Wall Street bonus fell a bit last year — to $176,000
The average Wall Street bonus fell 2% last year — to $176,500, New York state officials say. The bonus' high water mark was $240,400 in 2021, and its relative low was $111,400 in 2011.
cbsnews.com
The Sports Report: Complete team effort leads Lakers past Hawks
All five starters finished with at least 12 points and all five got to spend most of the fourth quarter on the bench.
latimes.com
'He brings that punch': Why the Clippers' Norman Powell could win sixth-man award
Three-time award winner Jamal Crawford knows what it takes to be a star sixth man and he says Norman Powell "can get everybody else on track.”
latimes.com
Chronic fatigue patients are bravely offering their illnesses to science
One woman’s struggle with myalgic encephalomyelitis/chronic fatigue syndrome might help millions of Americans.
washingtonpost.com
Underdog Wagner unfazed by what’s standing in way of Cinderella March Madness run
It has been 21 years since Wagner appeared in its lone NCAA Tournament, an 87-61 loss to Pittsburgh in the Round of 64.
nypost.com
Wife of Saints’ Juwan Johnson already getting ‘thousands’ of messages about NFL matchmaking project
The wife of New Orleans Saints tight end Juwan Johnson is determined to set up NFL power couples — and “thousands” are already interested in her matchmaking abilities. “The amount of emails I get daily,” influencer and TikTok star Chanen Johnson told The Post in a recent interview. “I get thousands of emails daily with...
nypost.com
Oregon man found guilty of murder after DNA links him to 1980 cold case
An Ore., judge has found man guilty of first-degree murder in a 1980s cold case involving a college student. The man was arrested in 2021 after DNA technology linked him to the crime.
foxnews.com
China Is Growing Old Before It Gets Rich: Economist
Beijing's sunny economic forecast this year belies the difficulty of escaping the middle-income trap, a Chinese analyst says.
newsweek.com
Notre Dame Cathedral: A timeline of events in the restoration project
The restoration of Notre Dame Cathedral in Paris, following a fire in April 2019, has been a story of perseverance, and progress has continued steadily.
foxnews.com
Donald Trump Rages at Letitia James Over Massive $464m Bond
The former president accused the New York attorney general of carrying out an "unlawful witch hunt" against him.
newsweek.com
Russian TV Fans Alaska Secession Flames
Russian state TV referenced a YouGov poll of 35,000 U.S. adults which found that support for independence in Alaska was at 36 percent.
newsweek.com
Judge Cannon's Two Scenarios 'Direct Jury To Find Trump Not Guilty'—Lawyer
Joyce Vance, a former U.S. attorney, called Judge Aileen Cannon's latest Mar-a-Lago case order "perplexing."
newsweek.com
Alabama A&M student injured after shootout with campus police
A student at Alabama A&M University engaged in a shootout with a campus police officer in a dormitory stairwell on Monday afternoon, authorities said.
foxnews.com
'Suicidal' teen shot dead by Florida Keys deputy after pointing gun at police: authorities
A suicidal girl was shot dead by police in The Florida Keys early Monday after she pointed a stolen gun at deputies. The deadly incident occurred on Stock Island.
foxnews.com
Hong Kong Security Law Could Damage City’s Image as Financial Hub
Some firms have already moved staff out of the city since the Chinese government took a heavier hand in 2020.
nytimes.com
Trump claims any Jew who votes Democrat 'hates their religion' after Schumer speech on Senate floor
Former President Donald Trump made a series of inflammatory remarks against Senate Majority Leader Chuck Schumer, claiming the Democrat has pivoted against Israel for votes.
foxnews.com
Justice Jackson ripped for worrying about the First Amendment 'hamstringing' government: 'Literally the point'
Supreme Court Justice Ketanji Brown Jackson was ridiculed on Monday after voicing her concerns that the First Amendment could limit the federal government.
foxnews.com
Three Times You Should Never Brush Your Teeth, According to a Dentist
Newsweek spoke to Dr. Shaadi Manouchehri about her video that has 12 million views on TikTok.
newsweek.com
From an Azerbaijan prison, a dissident writes home: ‘Save my life’
Ilham Aliyev, the strongman leader of Azerbaijan, continues to silence independent journalists and punish a prominent critic with inhumane conditions in prison.
washingtonpost.com
The remaining big roster decisions Mets face before opener
Team officials had a good idea before camp began of the 26 players they plan to take north. But the X factor is always injuries, with spring training performance also not completely dismissed.
nypost.com
Haiti, US Embassy entrance area plunge into darkness as vandals attack power plant and substations
Haiti's national utility says attacks on a power plant and four substations in Port-au-Prince has left the facilities "completely dysfunctional."
foxnews.com
Sullivan rips reporter's question on Biden swearing as asking 'when did you stop beating your spouse?'
National Security Adviser Jake Sullivan took issue with the premise of a question about President Biden from Fox News correspondent Peter Doocy.
foxnews.com
France Set to Trial Four-Day Week for Divorced Parents
Gabriel Mello/Getty ImagesFrance will offer divorced parents who share custody of their kids the opportunity to work four-day weeks as part of a trial scheme to be introduced later this year.Prime Minister Gabriel Attal offered details of the plan to La Tribune, with civil servants in some government departments given the chance to work just four days a week when their children are staying in their homes from September.Attal introduced the idea in France’s finance ministry in 2022 and is now seeking to roll out the policy to the broader workforce in an effort to increase the quality of French working life, according to The Times.Read more at The Daily Beast.
thedailybeast.com
NY AG accused of bullying women, George W Bush assassination plot unraveled and more top headlines
Get all the stories you need-to-know from the most powerful name in news delivered first thing every morning to your inbox.
foxnews.com
Former Nickelodeon Stars Slammed Over Comments About Controversy
Three former "Ned's Declassified" cast members are being criticized over their comments in a TikTok live that's been shared on X.
newsweek.com
3 things to watch for in Tuesday's primaries
The presidential nominations are locked up -- but the primaries remain, along with any tea leaves they might provide.
abcnews.go.com
Chiefs' Harrison Butker hopes Taylor Swift, Travis Kelce 'get married and start a family'
Kansas City Chiefs kicker Harrison Butker opened up about meeting Taylor Swift for the first time and what he hopes for her and Travis Kelce for the future.
foxnews.com
US and Japan call for ban of nuclear weapons in outer space
The U.S. and Japan are jointly sponsoring a United Nations Security Council resolution urging nations not to deploy or develop nuclear weapons in space.
foxnews.com
Dylan Mulvaney's 'Days of Girlhood' Reaches Major Milestone
The influencer released a song about "the basics of being a girl"—and it is already a chart-topper.
newsweek.com
What to Know About Hong Kong’s Article 23 Legislation
The legislation marks another significant erosion of freedom in a former British colony once known for its relative autonomy from Beijing.
nytimes.com
Ohio Supreme Court primary begins as Democrats try to flip court from Republican control
The Democratic primary for one of Ohio's Supreme Court seats has begun. The state's Supreme Court has a 4-3 Republican majority, but Democrats hope to flip that in their favor.
foxnews.com
FTC to return nearly $100M to buyers of Benefytt's fake health plans
Nearly half a million U.S. consumers lured into buying sham insurance from Benefytt Technologies will get refunds.
cbsnews.com
New York governor orders probe of marijuana licensing program 'disaster' amid black market surge
Gov. Kathy Hochul of New York has ordered a probe of the state's recreational marijuana licensing program due to issues that have hindered its success.
foxnews.com
MLS continues to embarrass itself with its handling of the referee lockout
At a critical time for a league looking to capitalize on Lionel Messi and other stars, MLS is gambling away its reputation in the referee labor dispute.
latimes.com
Don’t defund the fight against Russia and China’s disinformation
A modest U.S. government organization that attempts to fight overseas disinformation is facing possible closure.
washingtonpost.com
Four things to watch as USC begins spring football practice
As USC prepares to open spring practice on Tuesday, here are four things to watch, including the quarterback competition to replace Caleb Williams.
latimes.com
America's Lead Crisis Demands a Comprehensive Solution | Opinion
Any amount of lead exposure to the body is harmful, and young children are especially vulnerable to its effects.
newsweek.com
Andy Cohen, more royal fans believe ‘fake’ Kate Middleton appeared in farm stand video
The King of Bravo shared his skepticism about the Princess of Wales as conspiracy theorists believe she had a "double" during the outing with Prince William.
nypost.com