Judge Blocks Trump Rule Requiring Pharma Companies To Say Price Of Drugs In TV Ads
President Donald Trump talks about drug prices during a visit to the Department of Health and Human Services in Washington in October. A federal judge on Monday blocked a major White House initiative on prescription drug costs, saying the Trump administration lacked the legal authority to require drugmakers to disclose their prices in TV ads.
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A federal judge on Monday stopped a Trump administration initiative that would have required drug makers to reveal the sticker price of their drugs in television ads.
Under the rule, if a medicine’s list price was more than $35 a month, its list price would have to be stated during the commercial. The challenge opponents say is that a drug’s list price and estimates of what people can expect to pay varies widely depending on coverage.
The rule was blocked hours before it was set to take effect, the latest setback for the White House as Trump administration officials continue to search for ways to pressure pharmaceutical companies into lowering their prices — a proposal made by the Trump administration in the run up to last November’s midterm election.
The decision from U.S. District Judge Amit Mehta in Washington, D.C. ruled that the Health and Human Services Department does not have the regulatory power to make drug manufactures include the cost of drugs in television commercials.
Mehta wrote that in halting the rule, the court was not questioning its wisdom, but rests the issue on the law set by Congress in the first place.
“That policy very well could be an effective tool in halting the rising cost of prescription drugs. But no matter how vexing the problem of spiraling drug costs may be, HHS cannot do more than what Congress has authorized,” Mehta wrote.
Critics pointed out that the rule was toothless, since there was no enforcement mechanism spelled out for when a company did not comply. Instead, the rule relied on the private sector to police itself.
The television-ad rule had the support of both the Trump administration and consumer rights advocates.
That said, patient advocate groups told NPR that while holding drugmakers accountable for prices is welcome, they remained skeptical that drug companies could be shamed, as the administration intended, into lowering their prices.
Last month, groups including drug manufacturers Merck, Eli Lilly and Amgen sued the Trump administration over the rule, arguing that it would violate the companies’ free speech rights.
AARP, which represents older Americans, expressed disappointment on Monday over the court’s ruling.
“Today’s ruling is a step backward in the battle against skyrocketing drug prices and providing more information to consumers,” the group said. “Americans should be trusted to evaluate drug price information and discuss any concerns with their health care providers.”
Equal Pay For Equal Play; The U.S. Women’s Soccer Team Tackles Its Next Quest
U.S. Women’s National Team players celebrate with the FIFA Women’s World Cup Trophy following team’s victory Sunday.
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The celebration of the Women’s World Cup soccer championship shifts this week from France to New York City. On Wednesday, the U.S. Women’s National Team will be honored with a ticker tape parade and keys to the city, following its 2-0 win over the Netherlands in Sunday’s final in France.
But amid the celebration, the women now turn their focus back to a more serious matter. A gender discrimination lawsuit, filed before the tournament, demands pay equal to that of their male counterparts. And legions of U.S. Women’s National Team supporters say a fourth Women’s World Cup title makes the case even stronger.
Equal pay
In the stadium near Lyon, France, on Sunday, it didn’t take long for the pivot.
From joy to indignation.
As U.S. players hugged and celebrated their hard-earned victory over a tough Dutch team, chants of “equal pay” bubbled up from the stands. There was booing too — for members of FIFA, soccer’s international governing body, which reportedly will pay the U.S. women a $4 million bonus, compared with the $38 million paid to last year’s World Cup winner.
From fans to players, the message was clear.
“To have our ladies represent and show that our soccer program is superior, it should inspire the United States to pay these women what they deserve to be paid,” said Kenneth Lloyd, from Austin, Texas. He watched the game in France with his son and daughter.
Megan Rapinoe, the outspoken U.S. winger, won the Golden Ball award, given to the tournament’s MVP. But after the match, she assumed her other role as outspoken plaintiff in the class action suit filed in March against U.S. Soccer, the sport’s governing body in the United States. The suit was brought by U.S. players, but Rapinoe says everyone at this Women’s World Cup helped push the fight forward.
“All players, I’m saying every player at this World Cup, put on the most incredible show that you could ever ask for,” Rapinoe said. “We can’t do anything more to impress, to be better ambassadors, to take on more, to play better, to do anything. It’s time to move that conversation forward to the next step.”
A tricky resolution
The next step is mediation, as the members of the U.S. women’s team and their federation try to resolve issues of equal pay and better working conditions.
On the surface, resolution seems easy.
Pay the U.S. women what the U.S. men make. Look at the women’s success versus the men’s lack thereof, amplified on Sunday. The women won their fourth Women’s World Cup title, while the men lost in the final of a regional tournament. In 2017, the men failed to qualify for the World Cup for the first time since 1986.
And look at what the teams earn for their federation.
The Wall Street Journal reports that from 2016 to 2018, U.S. women’s games generated about $50.8 million in revenue, compared with $49.9 million for men’s games.
Still, sports law expert Michael McCann says resolving the issues is tricky.
“It’s a complex topic,” McCann says, adding, “It’s not as straightforward as I think it’s depicted.”
McCann directs the Sports and Entertainment Law Institute at the University of New Hampshire’s School of Law. He says there’s not a clear consensus on a lot of the issues involved in this dispute.
“The two systems [for paying women and men] are designed differently,” McCann says. And the systems were structured through separate collective bargaining agreements.
“The men’s system pays players when they play, through bonuses, whereas the system for women’s players has guaranteed pay and also pays for certain bonuses as well. But it’s structured differently.”
McCann says there’s debate about how revenue is attributed to the men’s team’s players and the women’s team’s players. There’s debate about sponsorships. Sponsorships are sometimes sold in bundled packages, so it’s difficult to say they go to one team or the other.
Also, the teams play different numbers of games, and that has an effect on revenue as well.
So with all these complexities and moving parts, is the popular perception that the U.S. women are grossly underpaid compared to the men accurate?
According to an article in The Washington Post, the women are paid less sometimes. The biggest pay discrepancy does appear to be in World Cup bonuses, mentioned earlier.
McCann says the lawsuit remains on the docket while mediation goes on, but the litigation is effectively suspended during talks. If mediation fails, he says, [the women] resume their litigation.
Part of a larger story
Emily Martin is watching what happens from her position at the National Women’s Law Center. She’s vice president for education and workplace justice at the NWLC, and she sees the women’s fight as part of a broader, reinvigorated women’s movement of the past couple of years.
“This should be seen as connected to the Time’s Up initiative,” Martin says, “where so many women in the entertainment industry and beyond stood up and said, ‘We aren’t going to sit around in the face of inequality anymore. We’re demanding our due.’ “
“I think it’s connected to the Me Too movement, where so many individuals shared their stories and said it’s time to really fundamentally change how we treat victims of sexual violence in this country.”
“And it’s connected to the Women’s March, where so many women literally took to the streets to say the status quo isn’t good enough and it’s time for a change.”
Even if the pay gap between the U.S. women and men might not be as glaring across-the-board as is often depicted, Martin thinks women everywhere in this country, whatever their jobs, should pay attention to the case. She says when you compare women and men who work full-time, year round, women are paid about 80 cents for every dollar paid to men.
“I do think it will inspire individual women to come forward and say, ‘Pay me what you owe me,’ ” Martin says. “I also think that when you see this kind of high-profile excellence fighting for equal pay, this is an important prompt for lawmakers … both on the state and federal level … to do the same.”
Martin says considering the U.S. Women’s National Team’s sustained excellence, pay equality may be aiming too low — and perhaps it’s time to ask for better pay.
Milwaukee’s Racing Sausages Start A Trend At Major League Ballparks
Nearly two-thirds of Major League Baseball teams have had some form of mascot race. It all began with the Milwaukee Brewers’ Racing Sausages in the early 1990s.
News Brief: Jeffrey Epstein, Hong Kong Bill, Obamacare Trial
Financier Jeffrey Epstein pleads not guilty to sex trafficking of minors. Hong Kong’s leader says the controversial extradition bill is dead. And, the Affordable Care Act is on trial again.
Texas To Ask Federal Appeals Court To Pull The Plug On Obamacare
The Affordable Care Act goes on trial Tuesday in New Orleans. The appeals case — Texas versus United States — is yet another lawsuit that seeks to have President Obama’s signature law overturned.
U.S. Women To Resume ‘Equal Pay For Equal Pay’ Fight After Winning 4th World Cup
The U.S. Women’s National Team won the Women’s World Cup championship for a fourth time. As the players return home, they’re ramping up their fight for “equal pay for equal play.”
So You’ve Become A Rabid Fan Of Women’s Soccer. Now What?
Megan Rapinoe and the U.S. squad won a lot of fans on their way to winning the Women’s World Cup on Sunday in Lyon, France. For the sport to keep growing, that support needs to continue long after the ticker tape lands.
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You cheered when Megan Rapinoe scored that ice-cold penalty shot. You spilled your coffee as you celebrated Rose Lavelle’s incredible left-footed strike. You got misty watching that stirring new Nike ad. And when you saw the U.S. team members hoist the World Cup trophy over their heads on Sunday, you felt their joy as your own.
Congratulations! You are now a U.S. Women’s National Team fan, if you weren’t one already.
When the U.S. won the Cup on Sunday, the crowd broke into chants of “Equal pay!” And fans like you have a role in making that happen.
So what can you do? Here’s your guide to helping the sport and its players to prosper.
Catch the champions on their victory tour
The World Cup champions will play a series of games in at least four U.S. cities as part of a barnstorming victory tour. Sites and dates haven’t yet been announced. But first, they’ll be feted with a ticker tape parade on Wednesday morning through the streets of Manhattan, where New York Mayor de Bill Blasio will present them with the keys to the city.
Go to NWSL games (this one really matters)
Every member of the U.S. Women’s National Team plays in the National Women’s Soccer League. Good news: The league’s season is less than halfway through — meaning that in short order, the players you watched tear up the field in France are players you can watch in real life.
The league has nine teams: Chicago Red Stars; North Carolina Courage (Raleigh); Portland Thorns (Oregon); Sky Blue FC (Central New Jersey); Washington Spirit (D.C.); Houston Dash; Orlando Pride (Florida); Reign FC (Tacoma, Wash.); Utah Royals FC (Salt Lake City).
Some of the NWSL’s teams are thriving — the Portland Thorns, in particular, enjoy a fervent following. The team attracted an average of nearly 17,000 fans a game last year. Researchers have studied what they say is the Thorns’ world-leading popularity and found that the fan culture was the No. 1 reason people loved going to matches. Excited fans beget more excited fans.
One benefit of having a small league is that most teams have a number of national team players. You can catch standouts from overseas, too: Australian superstar Sam Kerr plays for the Chicago Red Stars and is the league’s all-time leading scorer. Canadian legend Christine Sinclair plays for the Thorns, alongside Tobin Heath and Lindsey Horan.
Many of the teams play in small suburban stadiums that aren’t super accessible by transit. The Washington Spirit, featuring Rose Lavelle and Mallory Pugh, play at the Maryland SoccerPlex, about an hour northwest of D.C., with a seating capacity of just 4,000. But the Spirit will play two upcoming matches at D.C. United’s gleaming new Audi Field, which seats 20,000 on the District’s waterfront.
One reason the USWNT has been fighting so hard for higher salaries is that women’s pro soccer in the U.S. doesn’t pay well. For the 2019 season, the league’s maximum player salary is $46,200, while the minimum is just $16,538. The more tickets, merchandise and sponsorships that NWSL teams sell, the more its player salaries can rise.
Fan support is crucial to sustaining the league. Both the Boston Breakers and FC Kansas City ceased operations in the past two years. And the NWSL is built on the ashes of two previous women’s soccer leagues that folded, including one that was founded amid the excitement of the U.S. win at the 1999 World Cup.
Watch them play on TV
Another way to generate more money for women’s soccer is to watch it on television or via streaming online. The USWNT and NWSL make money from ads shown during their games, and the bigger the audience for each broadcast, the more often such games will be televised. And if viewership grows, networks will opt to show more games on flagship channels rather than obscure cable offerings.
Big news on this front was announced last week: ESPN will broadcast 14 upcoming NWSL matches on its ESPN2 and ESPNEWS channels, and they’ll be streamed on its app, too.
Keep the pressure on FIFA and the U.S. Soccer Federation
Chants of “Equal pay!” resounded in the stadium after the U.S. clinched Sunday’s final in Lyon, France. And everywhere from Twitter to Congress, “Pay the women” has become a curt directive to the U.S. Soccer Federation as the players’ lawsuit against their employer moves into mediation.
FIFA President Gianni Infantino says he intends to double the investment in women’s soccer over the next four years and double the prize money for the winners of the next Women’s World Cup — but that still won’t shrink the gap because the men’s purse will also grow.
Teams at the 2019 Women’s Cup will share $30 million, compared with the $400 million the men’s teams split last year. In 2023, the women will play for $60 million, while the men’s prizes increase to $440 million.
“If you really care about each game in the same way, are you letting the gap grow? No,” Rapinoe said Saturday. “Are you scheduling three finals on the same day? No. Are you letting some federations play two games in the four years between each tournament? No, you’re not.”
While no one would call FIFA or U.S. Soccer especially transparent organizations, they absolutely rely on fan and sponsor support. Tell them you care about the women’s game. Tell them to pay the women.
Live abroad? Support women’s soccer where it needs it most
The success of the USWNT is a direct result of the investment that has been made in women’s sports in America.
One enormous factor is Title IX, which requires athletic departments at schools and colleges to fund women’s sports as a condition for receiving federal financial assistance. Another factor is that pay gap notwithstanding, U.S. Soccer does an admirable job of supporting and funding the women’s team.
Many players elsewhere are not so lucky. The teams in Jamaica and Thailand, for example, are reliant on the largesse of a single donor to support their squads in the absence of adequate funding from the national federations.
The opportunities to help these teams are enormous — whether it’s making a donation, going to watch a pro or college match, or coaching a girls’ team.
If the millions and millions of people who tuned in to this World Cup each do one or two items from this list, the 2023 tournament will be even more spectacular than this one.
Motorcycle Crash Shows Bioethicist The Dark Side Of Quitting Opioids Alone
Travis Rieder, author of In Pain: A Bioethicist’s Personal Struggle With Opioids, says none of the doctors who prescribed opioids for his waves of “fiery” or “electrical” pain taught him how to safely taper his use of the drugs when he wanted to quit.
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In 2015, Travis Rieder, a medical bioethicist with Johns Hopkins University’s Berman Institute of Bioethics, was involved in a motorcycle accident that crushed his left foot. In the months that followed, he underwent six different surgeries as doctors struggled first to save his foot and then to reconstruct it.
Rieder says that each surgery brought a new wave of pain, sometimes “searing and electrical,” other times “fiery and shocking.” Doctors tried to mitigate the pain by prescribing large doses of opioids, including morphine, fentanyl, Dilaudid, oxycodone and OxyContin. But when it came time to taper off the drugs, Rieder found it nearly impossible to get good advice from any of the clinicians who had treated him.
“We called everybody, and a bunch of them wouldn’t even talk to me,” he says. “And this includes the pain management team. They would not speak with me, and the message they sent through a nurse was, ‘We prescribe opioids but we don’t help with tapering.’ “
Rieder likens his experiences trying to get off prescription pain meds to a game of hot potato. “The patient is the potato,” he says. “Everybody had a reason to send me to somebody else.”
Eventually Rieder was able to wean himself off the drugs, but not before receiving bad advice and going through intense periods of withdrawal. He shares his insights as both a patient and a bioethicist in a new book, In Pain: A Bioethicist’s Personal Struggle With Opioids.
Interview highlights
On what happened when he tried tapering opioids after an ill-advised consultation with a plastic surgeon, who recommended abruptly reducing his dosage
He didn’t know what he was talking about; that wasn’t his area of expertise. He just tried to think of something that was reasonable — and he would eventually admit this, so this isn’t too much editorializing — but we went home and the next day we dropped the first dose and it immediately sent me into withdrawal. … It got worse over the first few days, and so we start to get really freaked out, because I feel like I’ve got the worst flu I’ve ever had multiplied by some order of magnitude. And I’m thinking, I have an entire month of this to get through. And so [my partner and I] get pretty freaked out.
On why it was so hard to find a doctor to help him taper opioids
I asked myself that question every day, every hour for a very long time. And once I transitioned from being an opioid patient to being an opioid researcher the answer I came to was something like “a lot of doctors don’t know, so this is just a knowledge gap.” So this is probably the best description of my plastic surgeon. He just had no idea how to do this. And that’s understandable, because clinicians — doctors — don’t get a lot of pain education in medical school. It’s not required — a bunch of them get zero — and, on average, you only get a handful of hours. So there’s a knowledge gap for sure.
On being sent to an addiction clinic
We called addiction clinics and they very nicely and very gently said, “Boy, you are not our job. We’re dealing with people who might die from a heroin overdose anytime they get turned away. We’re triaging here. You just took too many pain meds. You just need your prescriber to get you off them.”
On the ways in which money plays a role in opioid use
Opioids are dirt cheap, because a bunch of them have been off patent for decades, and these other sorts of therapies can be really expensive. … A lot of what I was supposed to do to help that pain was physical therapy. Physical therapy stopped getting coverage by my insurance when I turned over the new year. And I no longer hit my deductible, so it was too expensive. So I stopped. Because I was a relatively new faculty member — I couldn’t afford it. And so I keep thinking, well, surely a bunch of other people would also struggle to pay for this.
So there are all of these different methods for handling pain that they could be arrows in the quiver of medicine, but they’re hard. They get covered less. They’re expensive. And so what do we know about opioids? Well, they’re incredibly cheap. Morphine is a couple cents per dose. And they are easy. You give them to the patient, the patient feels better immediately. You give pills to a patient who comes in complaining about pain, they leave happy. So this really led me to investigate this, like, deep system of perverse incentives that have pushed us toward just prescribing opioids instead of doing something more integrative and holistic.
On how opioid dependence is treated as a medical issue, but heroin addiction is treated as a criminal issue
Now we’re all very concerned about the opioid epidemic — when there have been people of color dying from heroin disproportionately for a really long time, and we just don’t talk about it. And we treated them like criminals. That’s a travesty. It’s absolutely tragic. It’s a stain on our response to drugs in this country. My story is not the only one that matters. Stories that look like mine aren’t the only ones that matter. People take drugs for a reason. And whether you started with oxycodone or with heroin, if you were medicating something and it hurt you, and you ended up dying from overdose, your life matters. And we need to just kind of announce that loudly every time we have this conversation.
Lauren Krenzel and Seth Kelley produced and edited this interview for broadcast. Kelley, Bridget Bentz and Deborah Franklin adapted it for the Web.
How João Gilberto’s Music Sparked An Aesthetic Revolution
João Gilberto in 1970
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From a casual distance, the music of João Gilberto sounds like it might belong to that ancient realm known as “easy listening.”
Everything’s calm, for starters. Even at fast tempos, Gilberto’s voice demands nothing — hushed, thin, confession-booth quiet. His rhythm guitar anchors the music with accompaniment that can seem almost hypnotically repetitive. The melodies rarely beg for attention, instead basking in that sublime mix of contentedness and yearning common throughout Brazilian music. There are strings rising up in wave-like swells from time to time, and lamenting love calls from the low brass.
Beneath that smooth and pleasant veneer, Gilberto built a quiet (and still misunderstood) aesthetic revolution – a lithe, strikingly modern approach to rhythm and melody that became the blueprint for bossa nova.
Gilberto, who died at home in Rio de Janeiro on Saturday, was best known for his contributions to Getz/Gilberto, the 1964 album that, through its single “The Girl From Ipanema,” made bossa nova a worldwide sensation (and won the Grammy for album of the year). But Gilberto deserves to be remembered more broadly, as a kind of patron saint of understatement, whose early recordings transformed the boisterous celebration of samba parades into music of arresting intimacy.
The rare instrumentalist (i.e., not a composer) to define and shape a musical genre, Gilberto developed an austere, steady-handed revolution that opened up lanes of exploration for subsequent generations. And it swept like wildfire, becoming pervasive before he could even be properly acknowledged as its spark plug. (“Eventually the culture caught up to him, and despite his reputation as a recluse, he became a revered figure in Brazil — referred to as “O Mito/The Master” and “O Rei da Bossa/The King of Bossa” and “Ill Mastro Supremo,” and, perhaps most fittingly, “O Zen-Baiano/The Zen Master of Bahia.”)
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Those early recordings, particularly his 1958 take on Antonio Carlos Jobim’s “Chega de Saudade/No More Blues,” had a meteor-like impact on the musicians of Brazil; Gilberto’s blend of whispering vocals and exactingly precise guitar accompaniment represented a radical break from the schmaltzy pop balladry (Nelson Gonçalves, for example) on the radio at the time. Guitarist Oscar Castro-Nieves recalled hearing that single for the first time as a teenager: “It changed everything, for every young musician in Brazil … all I can say is that it was like the first time I heard Charlie Parker.”
The singer and songwriter Caetano Veloso, another legendary Brazilian singer and songwriter whose discography elaborates on Gilberto’s basic themes, was even more effusive in an L.A. Times interview: “I owe João Gilberto everything I am today. Even if I were something else and not a musician, I would say that I owe him everything.”
Gilberto’s stealth approach was born after several unsuccessful attempts to establish himself as a musician for hire in Rio, where, according to legend (as relayed in Ruy Castro’s authoritative history of bossa nova, Chega de Saudade), he overstayed his welcome on the couches of friends. He fled to his sister’s house, in a town called Diamantina, where, in a tile bathroom with favorable acoustics, he began to experiment with a sound built around brooding, vibrato-free and leisurely, long-toned vocals.
In a rare interview with the New York Times in 1968, Gilberto explained that his process involved editing out all but the most essential information. “It has to be very quiet for me to produce the sounds I’m thinking of.”
Gilberto’s central innovation, overall, was in the guitar accompaniment. Gilberto took the massive rhythm of the samba schools he heard growing up in Bahia – a thrilling sensory experience involving hundreds of drums, superloud shakers and clanging metal bells locked together in endlessly propulsive polyrhythm – and distilled it down to stark human scale. Music centered around one voice and one acoustic guitar.
“Rosa Morena”
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Typically, such a reduction of forces diminishes — but Gilberto’s reduction had the opposite effect, opening up a new resonance for samba, using the form’s rhythmic intensity to uncover hidden directions and nuances. First, Gilberto caught the whomp of the samba bass drum with his thumb. Then, with his other fingers moving independently, he’d stab against the time with crisply articulated chords, forming an artful, unpredictable syncopation. These patterns can sound like recurring loops (Gilberto’s time is astonishingly steady) but as you listen more closely, they register as constantly evolving codes. You can hear him varying the cadences, the length of the patterns, the voicings. The result: An ever-changing, mosaic-style backdrop, a guitar-powered perpetual motion machine. (“Rosa Morena” is a good example of this.)
“Brigas, Nunca Mais”
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“Doralice”
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Over this, Gilberto sang in a placid, straightforward style that sometimes masked the turbulence underneath (as on “Brigas, Nunca Mais”), and sometimes sharpened it (as on “Doralice”). Having turned the extroversion of samba inward, he went about exploring distinct shades of emotion, adding dimension and richness to beloved early samba classics by subtracting the pageantry.
In performances and recordings from the 1970s, Gilberto began stretching out melodic phrases in whimsical, sometimes radical ways; it could be disarming to hear such a languid, vapor-like voice creating tension just by reconfiguring the commonly understood shape of a familiar melody.
Those explorations align Gilberto with artists like Bob Dylan, whose ad-libbing confounded expectations in the quest for newly resonant interpretations. More broadly, Gilberto’s austere, modernist approach connects to artistic movements outside of Brazil, most notably jazz. In both his guitar work and his singing, Gilberto was a master improviser, and his less-is-more philosophy mirrors those of Miles Davis and Thelonious Monk. As they did, Gilberto pared excess language and stylistic flourishes to the bare minimum, on a quest to uncover nuances by subtraction.
As the “new” trend of bossa nova rose in the early ’60s, Gilberto became popular with a rising generation of songwriters. He introduced hundreds of songs that drew from samba while adding richly literary perspective on romance and devotion. These form the core of an extraordinary multi-generational Brazilian songbook that begins with the work of the prolific Antonio Carlos Jobim in the 1950s and ’60s, along with tunes by Veloso, Edu Lobo and others active in the late ’60s as well as stars of the ’70s like Milton Nascimento and Djavan. All of these share a common thread — the neatly syncopated performance style of Joao Gilberto. His crystalline renditions of “Corcovado” and “Caminhos Cruzados” (and countless other Jobim gems) taught subsequent generations of singers and instrumentalists how to approach the composer’s sophisticated harmonies, how to convey meaning with the slightest of gestures, how to create the kind of openness that draws the listener into the deep poignance of a tune.
The remarkable thing about João Gilberto is how often he managed this sublime art, under all kinds of musical conditions. His discography includes quietly transfixing recordings across a range of hues, from the upbeat to the meditative. And whether he’s working with a lush studio orchestra or playing alongside a lone percussionist, he rarely sounds like he’s exerting himself. Everything flows, effortlessly. He approaches the music as though sneaking or sliding into it. He’s coy, and wily, sculpting drop-dead gorgeous melodies out of shallow breath, dispensing intricate staccato samba codes with the grace of a dancer.
It is, from a distance, easy listening – the sound of serenity and calm, as steady as the sea. Let it get under your skin for a while, and the nuances blossom into complexities, the complexities breed more levels of nuance… and, pretty soon, it’s like being flattened by a feather.
The Promises And Pitfalls Of Gene Sequencing For Newborns
A decade ago, it seemed inevitable that every newborn would get a complete gene scan. But there are technical challenges and practical concerns.
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Sequencing a person’s DNA is now a routine task. That reality has left doctors looking for ways to put the technology to work.
A decade ago, a top federal scientist said, “Whether you like it or not, a complete sequencing of newborns is not far away.” Dr. Francis Collins, who made that statement, has been head of the National Institutes of Health for the intervening decade. But his prophecy hasn’t come to pass, for both scientific and practical reasons.
Scientists have found that, so far, a complete genetic readout would be a poor substitute for the traditional blood test that babies get at birth to screen for diseases.
Even when genetic testing provides useful information, it also can raise unsettling questions.
One of the big concerns about running gene scans on newborns is how families will receive and make sense of the results.
Christine Kim, a graduate student who studies international health, volunteered for a study at the University of North Carolina at Chapel Hill to explore that issue.
“I think when it’s your first [child], you want to be as prepared as possible, even though there’s no way to actually prepare for the experience,” she said.
After her baby girl was born, the infant had the standard blood test to screen for rare genetic disorders. The baby got a cheek swab as well, so researchers could sequence all her genes. (This test is called exome sequencing, which decodes about 2% of a person’s DNA, the part that contains the actual genes but not, for instance, the code that regulates gene expression.)
Both the blood test and the gene scan gave the baby a clean bill of health. But the next question was trickier: Should Kim and her husband learn about genes that could affect their child later in life?
“On the chance they did identify something, would we need to put it in her medical records?” Kim wondered. “What does that mean for future health insurance?”
It’s currently illegal to base health insurance coverage on genetic information, but Kim and her husband worry about efforts to weaken those protections. Life insurance and long-term care insurance could also be at risk.
They thought about the ethics of prying into another person’s genes. “Should we have access to that information?” she wondered. On the other hand, learning about their baby’s genes would also tell them something about their own. “Maybe that’s selfish, but I was very curious about that too,” she said.
And that information turned out to be eye-opening. Kim said the couple’s baby carries a genetic variant that puts her at elevated risk of a disease as an adult. For privacy reasons, she didn’t want to be more specific. And Kim learned if the baby has that variant, then she has it too. That has made her more vigilant about her own health.
“I have given that information to my family, and it was suggested that my sisters and my mom also get tested,” she said.
This wasn’t the point of the newborn genetic screening, but it’s certainly a consequence. And it plays into the conversation over whether to make DNA sequencing of newborns routine.
Dr. Cynthia Powell at UNC helped run the study, whose results were published in June in The Journal of Pediatrics. She concluded that parents must get a chance to make an informed choice about how much information to receive — just the basics relating to their newborn or everything that could be actionable in the coming years. (Parents didn’t learn about genetic variants that are difficult to act on, such as those that increase the risk of developing Alzheimer’s disease.)
“We found that most people who were allowed that choice, about 70% of individuals, wanted information in all of the categories that we offered,” Powell said. That proportion may be high because the research team recruited people who were curious to begin with, but it’s clear there is a hunger for this information.
But Powell’s study and others show that, despite their high-tech gloss, genetic tests are actually much worse than the standard heel-prick test at picking up metabolic disorders like phenylketonuria. Those conditions are the main reason newborns get a blood test at birth.
The simple and inexpensive blood tests detect the actual biochemical defect that is a sure sign of these metabolic disorders.
In many cases of genetic testing, it’s not that straightforward to identify the underlying genetic flaw. A disorder can be caused by any of a number of genetic variants, and those variants can be on different genes. Many have yet to be cataloged.
Scientists discovered an even deeper problem. Just having one of these problematic variants isn’t necessarily enough to determine whether a child actually develops a metabolic disease.
It turns out that other variants can sometimes come into play in ways that scientists have yet to understand. “It really opens a new can of worms,” said Dr. Jennifer Puck at the University of California, San Francisco.
So DNA tests aren’t going to replace the standard testing without a lot more research.
Still, there are reasons to consider the DNA test as a routine add-on.
“There are other conditions that we have no screening test for,” Powell said. “Conditions that could predispose a child to cancer or other neurological conditions that are potentially treatable.”
Powell and Puck spoke at a meeting in late June organized by the NIH to review the prospect of genetic screening for newborns.
Dr. Robert Green, from Brigham and Women’s Hospital in Boston, voiced one view about doing that: “If sequencing reveals health risks at any point in life, and if that’s good, then it’s better to do it early.”
Why wait to find out potentially useful information, he asked his colleagues.
One reason not to go all in for genetic testing at birth is that, unlike the blood tests, these genetic tests can be freighted with worries about privacy and personal preferences, as Kim discovered.
And Puck said it would be a mistake to bring all those thorny issues to newborn screening programs that are now so widely embraced that parents aren’t even asked about them.
“The newborn screening programs we have enjoy a huge amount of public trust,” she said at the NIH meeting. “And we have to preserve that trust.”
Supplemental DNA screening would also be discriminatory, she argued, because it is not covered by government health insurance for the poor.
“We can’t now follow up everyone,” she said, “and I don’t think it’s right to have only wealthy people followed up and have the rest of our population left behind.”
Scientists at the meeting did agree that there can be good reasons to sequence genes if a child is sick and doctors don’t know why. That’s the story Patricia Bass of Greensboro, N.C., told me about her son, Aiden.
“For the first eight weeks of his life, he wasn’t gaining weight correctly, and we kept going back to the doctor,” she said. “And finally my husband and I kept looking in his eyes, and we noticed a white opaqueness. We knew it would probably be cataracts.”
That condition required emergency eye surgery. Aiden also had other troubles, including hearing loss and poor muscle tone. At age 2, it seemed he might have a rare disease.
“So we had him seen by a geneticist locally, and they didn’t find anything,” she said.
The Basses learned of the genetic testing study over in Chapel Hill, and they signed up.
Aiden’s test revealed that he has a serious genetic condition called Lowe syndrome, which could have a potentially devastating effect on everything from his kidneys to his intellect.
It’s not clear why his previous genetic test missed the diagnosis.
The diagnosis was bad news, but at least they had an answer.
“You grieve a life that you thought was going to be something different than what it is,” Bass said. “So that was very hard. Very hard.”
As a result of the diagnosis, she has added more specialists to Aiden’s list of doctors. But more significantly for the family, the diagnosis has changed her outlook.
“I decided to say it happened for us instead of to us,” she said. “And that one powerful word has really changed my life. Because I think of it as I was blessed and given an opportunity to love such a special soul, who has changed so many people that he’s met with such positivity.”
Aiden lives his life with so much joy, she said.
“I think I used to worry more,” Bass said. “Now I’m just living in the moment every day.”
That revelation is a far cry from the aspiration that genetic testing will transform care of children, but it is a step in that direction.
You can contact NPR science correspondent Richard Harris at rharris@npr.org.