National News

Supreme Court: At 21, Some Children Must Start Visa Process Over

NPR News - Mon, 2014-06-09 12:43

In an unusual majority, the Supreme Court's liberal and conservative justices have decided that immigrant children who turn 21 while their parents' immigration application is pending must start over.

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The One Thing Obama Didn't Say About Student Loan Repayment

NPR News - Mon, 2014-06-09 12:33

The president's order expanded the number of people whose student loan payments will be capped at 10 percent of their monthly incomes. But here's the fine print of his announcement.

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Taking Statins May Make People Less Physically Active

NPR News - Mon, 2014-06-09 12:27

Millions of people are taking statins to reduce their cholesterol. But people on statins exercise less and sit more, a study finds. And that's a health risk for heart disease and many other ailments.

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Human Or Machine? AI Experts Reportedly Pass The 'Turing Test'

NPR News - Mon, 2014-06-09 12:16

A program by two Russian artificial intelligence experts is said to have passed the iconic test by fooling a group of judges into thinking they were talking to a 13-year-old boy.

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Audit Reveals Vast Scale Of VA Waitlist Issues

NPR News - Mon, 2014-06-09 12:06

Before former Veterans Affairs Secretary Eric Shinseki stepped down, he ordered an audit of the VA system, hoping to find how many hospitals were lying about wait times. The audit found that approximately 100,000 veterans are waiting too long for care at the VA.

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In Las Vegas Shootings, Some Suspect Roots In Anti-Government Militias

NPR News - Mon, 2014-06-09 12:06

A married couple apparently killed two police officers and another woman in Las Vegas. The husband and wife, also killed in the shooting, appear to have held anti-government and anti-law enforcement views.

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With New Order, Obama Aims To Combat Student Debt Pressures

NPR News - Mon, 2014-06-09 12:06

President Obama is signing an executive order Monday, which will expand a loan forgiveness program for college debt. NPR's Mara Liasson looks at the program and the political salience of the issue.

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In A Landmark First, An AI Program Fools The Turing Test

NPR News - Mon, 2014-06-09 12:06

In an artificial intelligence breakthrough, a computer program has become the first to pass the Turing Test, according to scholars in England. Designed by Alan Turing, the test is meant to distinguish machines from humans in a series of natural language conversations. This program fooled humans into believing it was a 13-year-old boy.

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Despite Details Of Bergdahl's Captivity, Answers Stay Scattered

NPR News - Mon, 2014-06-09 12:06

As Army Sgt. Bowe Bergdahl recovers in a Germany hospital, details continue to emerge about his captivity, the circumstances of his initial disappearance and the effect his release has had on the military.

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One Week A Prime Minister: The Short Story Of Libya's Former Leader

NPR News - Mon, 2014-06-09 12:06

Libya faces some of its most serious upheaval since the fall of Moammar Gadhafi in 2011. No one knows that more than the prime minister who wasn't even in office a week before being forced out Monday.

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California Farmers Ask: Hey Buddy, Can You Spare Some Water?

NPR News - Mon, 2014-06-09 12:03

Water is scarce in California, and prices are all over the map. Some farmers are paying almost 100 times more than others. Should water flow to the highest bidder?

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Data on our data: 5 billion location records every day

Marketplace - American Public Media - Mon, 2014-06-09 11:46

This month marks the first anniversary of the Edward Snowden leaks that changed our understanding of online privacy. Just like the subject matter of the leaks, the reporting over the last year has offered a deluge of information. So this week, we're posting a short series about all that data. Every day we'll bring you another number that reminds us how much we have learned in the last year about online surveillance and the reach of the NSA.

5,000,000,000

location records every day

According to documents leaked by Edward Snowden, The National Security Agency collects nearly 5 billion location records every day from cellphones around the world. That data comes from mobile devices communicating with nearby cell towers, and the NSA uses it to look for patterns of movement that could link people to known terrorists.

Ashkan Soltani, an independent security researcher who has been working with the Washington Post to report on the leaks, calls this a "big data" approach to surveillance. "The majority of those 5 billion records are going to be innocent people's movements," Soltani says. "And those are still being collected and analyzed by the NSA, and I think that's going to be shocking to most people."

How do restaurants set their buffet prices?

Marketplace - American Public Media - Mon, 2014-06-09 11:13

One of the questions we received from listeners as part of our “I’ve Always Wondered” series is about buffets.  Mike Glatzer wrote to ask:

1)      How do buffets figure out the price to charge customers, in order to still make a profit?

2)      Do they know the average amount that each customer eats?

 Turns out, there’s a careful science to it.

Generally, restaurants figure you’ll eat about a pound of food.  To decide how much to charge, they take the average number of buffet customers per day and divide that into their daily buffet food cost. Then they know their average cost per person. 

But it doesn’t end there, because restaurants only stay in business when they’re making a profit. So restaurants put the cheapest, most filling food at the beginning of the buffet line.

“So we have potatoes au gratin at the beginning,” says Donetta Poisson, who teaches food service management at Georgia State University. “It’s cheese and potatoes but people generally love that.”

Poisson says buffets also use big spoons for those dishes.  The most expensive food is served on small platters. Or carved, one stingy slice at a time.

But fear not buffet fans. There are plenty of tricks you can do.

Mike Glatzer, who wrote in to ask the question about buffets, is actually something of an experienced buffet eater.  And when we met at an all-you-can-eat pizza buffet in Silver Spring, Md., he gave me some tips. Marketplace is pleased to present:

  • Don’t  starve yourself ahead of time.  If you’re going to a lunch buffet, eat a small breakfast. Otherwise, your stomach will shrink and you won’t be able to eat as much. 
  • Don’t get to the buffet right when it opens.  “If you show up when it first opens, they haven’t put out a lot of the best dishes,” Mike says. “They’re still preparing them or they’re saving them for, I guess, when they have the majority of the crowd.”
  • No fizzy drinks. The fizz will make you feel full.
  • Don’t eat the really salty stuff, like French fries. They’ll make you thirsty, and you’ll drink more. Whatever you’re drinking, it’ll fill you up.
  • Don’t be too adventurous.  You don’t want to get full on stuff you’re just trying. Fill up on the food you love, Mike says.
  • Save the cheap, starchy stuff for the end.  Don’t be fooled into loading up on it at the beginning of the buffet.
  • At a pizza buffet, don’t eat the crust. As Mike says, “The crust is just consuming real estate in my stomach that could be used for better purposes.”
  • No breaks. Your stomach will have time to realize it’s full. Mike says, “If you’re stuffing your face, it takes your body a while to realize how much you’ve consumed.”
  • Save a round or two for dessert. On the first round, Mike says, try a little bit of everything.  Decide on your favorites.  Then, “Go back for a second round, and that’s where you really hit them hard.”

Sandwich Monday: Taco Bell's Quesarito

NPR News - Mon, 2014-06-09 11:05

For this week's Sandwich Monday, we try the brand new creation from Taco Bell labs, the Quesarito. It's a quesadilla combined with a burrito.

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For sufferers of rare diseases, options are rare too

Marketplace - American Public Media - Mon, 2014-06-09 10:35

Doctors have to swear a Hippocratic oath, as you probably know. It’s a promise to do everything required to help the sick. The economy doesn’t have to swear any such oath. So, what do you do when your disease or illness is so rare that few people have financial reason or resources to cure it?  

When Donna Appel’s daughter Ashley was just a year old and learning how to walk, Appel noticed she was bruising a lot. 

“So I brought her to the pediatrician and they said that because her skin is fair, you just see bruises more. I never really understood that,” she recalls.

Ashley kept getting bruises, but nobody thought there was anything majorly wrong. Appell says she felt like a crazy person. That is, until one night when Ashley was three. 

“Three oclock in the morning I heard her whimpering in her crib. I went in and her crib was full of blood.  She was in and out of consciousness, we rushed her to the hospital. She was there for three months,” Appell recounts.   

Ashley had bled so much she had suffered traumatic brain injury.

She had what’s called Hermansky Pudlak syndrome, a rare congenital syndrome caused by genetic mutations that interfere with the body’s ability to break down unwanted cells and material. Because it affects such basic cellular machinery, it has a lot of symptoms.

To be more specific: “Albinism of the eyes and of the skin, a platelet disorder that causes bleeding, a lung complication called pulmonary fibrosis, and that’s a fatal illness,” says Dr. Samuel Seward, Ashley’s primary physician and perhaps one of the only doctors in the country whose practice focuses on HPS patients.

These and other complications kept Ashley Appell in the hospital for much of her childhood.

“I grew up there,” she recounts in a husky, yet still delicate voice. “A lot of the doctors and nurses raised me there. And because of the traumatic brain injury, I had different specialists come to the hospital, and they would have to catch me up with school.”

The disease is incredibly rare -- Just one to two people in a million get it. That’s why Ashley’s doctors had trouble identifying her illness, as people didn’t even know specifically what caused it yet. “There was no treatment out there, there was no gathered data. We felt terribly isolated,” Ashley’s mother remembers.  

The hard reality that the Appells were facing was that no pharmaceutical company thinks it’s going to make billions of dollars off of a disease that affects just a handful of people. In fact, not many researchers had ever heard of Ashley's disease. 

There are government incentives for companies to devote resources to rare diseases, such as the FDA’s Rare Diseases Program. There are also niche companies that don’t need to make billions of dollars. But the quantity of research, attention, and resources is hardly comparable to those devoted to, say, cancer.    

“For those with rare diseases there are obviously additional difficulties,” says Terri Hinkley, Executive Director of the Association of Clinical Research Professionals. “It’s normally a smaller patient population, there may not be the number of pharmaceutical or biotech companies interested in products for these diseases.”

And clinical trials – which are needed both for new drugs and new applications for old drugs – are expensive.  

“There are many different types and phases of clinical trials and research but individually each will cost potentially millions of dollars. The cost to bring one drug to market can be upward of $10 million.”

The Appells didn’t have that. But they did have something else. Numbers.

“Really who’s gonna care about one person,” she says. “I just had this feeling like we needed to create a mob.”  

And that is exactly what she did.  She formed what would eventually become the Hermansky-Pudlak Syndrome Network.  She enlisted her first member by getting in the audience for the Sallie Jesse Raphael show -- Someone contacted her when she made an impassioned plea from the audience. At first it was just two families, then three, then dozens.

Eventually, they would hold conferences to discuss research, meetings where sufferers of HPS would trade makeup tips, and outreach events among New York’s Puerto Rican community, among whom HPS is significantly more prevalent.

While  drug companies may need dollars, researchers often need subjects.  Donna Appell started cold calling scientists. “I told them I had these families and we needed research.”

One of those researchers was Bill Gahl, clinical director of the National Human Genome Research Institute* at the National Institutes of Health. 

“I would not be studying HPS if it weren’t for Donna Appell,” he says.  The early individuals of her group “served as a substrate” for research into the causes of the disease.

“We actually collected 24 hour urine buckets from families with HPS,” recalls Appell. “ We had to do it in the winter cause they all had to be refrigerated so we put them all out on the snow on our deck. I gave awards for the heaviest urine bucket, and a funnel to the family that handed in the lightest urine bucket.”

What Appell didn’t have in money, she made up for with the old Razzle Dazzle.  The families sent cards, they put on performances for the researchers.  And they focused on marketing.

“How are we gonna get people to be interested in Hermansky Pudlak Syndrome – I mean even the name of it!” Appell recalls.

So they do what companies do and went out and trademarked a brand. “One of our members came up with a slogan ‘Dare to be Rare’.”

They’ve put it on mugs and other merchandise.  The idea is to get a brand that people like even if they have no idea what the disease is.    “Look at Boston Strong and Life is Good,” says Appell, referring to branded themes put to charitable or commercial use.

Between the urine buckets and the fundraising, researchers were eventually able to figure out the genetic mutations that caused HPS, and even run a few clinical trials through the NIH.

“I can’t highilght enough the significant power that these patient advocacy groups have,” says Hinkley with the Association of Clinical Research Professionals. “Their expertise in their disease and the resources and networks they have available to them have become invaluable to the clinical research industry.”

Researchers and drug companies are slowly realizing that studying rare diseases can improve understanding of less rare but more lucrative diseases. “If you study the rare it will lead to the common. There is so much we can learn and generalize,” says Hinkley. 

But Dr. Samuel Seward, Ashley’s primary care doctor, says not enough diseases are approached this way. “Nationally and internationally there does need to be a paradigm shift,” he says. By focusing research on cellular mechanisms or symptoms that rare and prevalent diseases hold in common, everybody wins. “In the sum total, rare diseases are much more common than people want to assume they are,” says Seward. "People like to think about the really common disease – Alzheimers, coronary artery disease, high blood pressure, diabetes. But when you think of the whole spectrum of human illness, rare diseases are important too and people are dying every day of rare diseases and every year of HPS, and we need to think more broadly about how we spend our research dollars.”

*CORRECTION: An earlier version of this story incorrectly identified the National Human Genome Research Institute. The text has been corrected.

 

Slow down, or blow up. 'Speed' turns 20.

Marketplace - American Public Media - Mon, 2014-06-09 10:24

From the Marketplace Datebook, here's a look at what's coming up Tuesday, June 10:

In Washington, the Commerce Department reports on wholesale inventories and sales and the Labor Department issues its job openings and labor turnover survey for April.

It's the 79th anniversary of Doctor Bob and Bill W. founding Alcoholics Anonymous.

A House subcommittee on the Constitution and Civil Justice discusses the state of religious liberty in the U.S.

A House Foreign Affairs subcommittee examines reconstruction efforts in Afghanistan.

And remember that action film with the bus that would blow up if it didn't maintain 50 mph on Los Angeles' freeways? "Speed" was released 20 years ago.

Marketplace Weekend: What we're working on

Marketplace - American Public Media - Mon, 2014-06-09 10:17

If you haven't heard, Marketplace Money is transitioning to Marketplace Weekend. As a special thank you to our newsletter readers, we’re inviting you to give some of our new radio segments on early listen. Let us know what you think!

Tech IRL

Marketplace Weekend host Lizzie O'Leary and Marketplace Tech host Ben Johnson explore the digital world in real life. Listeners get deeper insight into how technology is changing the world around then, beyond smartphones and laptops.

In this edition, Ben and Lizzie look at New York City's plan to convert old public payphone stalls into wi-fi hotspots.

The Number

You might hear Marketplace cover "The Numbers" during the week, looking at the daily state of the stock market. For Marketplace Weekend, we meet the people behind the news, on 'Main Street' instead of 'Wall Street,' and what number is impacting them.

This number? Three, for three percent. As much as three percent of Ukraine's GDP comes from money earned overseas and sent back home. The World Bank says that per capita income in Ukraine is about $3500 in U.S. dollars, so all that extra money can be a big boost. It's common for Ukrainians around the world to send money back to their families and friends.

Is that changing?

My Money Story

There's a moment when money changes lives, either by gaining it, losing it, never having it.

This time, writer Brian Finkelstein shares a story about art and earning, and learning what actually makes you happy. 

Thanks for listening.

Obama Signs Order Easing Student Loan Payments

NPR News - Mon, 2014-06-09 09:25

The executive action will expand the number of students whose student loan payments will be capped at 10 percent of their monthly incomes.

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Fruit Juice Vs. Soda? Both Beverages Pack In Sugar, Health Risks

NPR News - Mon, 2014-06-09 09:23

Juice seems more natural and healthful than soda because it comes from fruit. But a study found that fruit juices have almost as much fructose as soda, which may make them just as unhealthful for you.

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In Oregon, End Of Life Orders Help People Avoid The ICU

NPR News - Mon, 2014-06-09 09:19

Most people don't want to die in the hospital hooked up to machines, but it can be hard to make those wishes known. A doctor's order with more force than an advance directive can help, a study finds.

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