AILSA CHANG, HOST:
Deep in the Ozark Mountains of Arkansas, a 30-year-old drug saved Lulabelle Berry's life. But what if the drug hadn't been there? That question haunts hospital pharmacist Mandy Langston as the drug's price continues to climb for her hospital. Reporter Sarah Jane Tribble explains why.
SARAH JANE TRIBBLE, BYLINE: Lulabelle and Jimmy Berry live on 600 acres at the top of a crooked and steep mountain road in northern Arkansas. Lulabelle remembers being on the computer just before lunchtime early last year. Then Jimmy felt the need to check on her.
LULABELLE BERRY: He was getting ready to go out, check on his cattle. And I didn't answer him when he called me.
JIMMY BERRY: I was just fixing to go out and get on my four-wheeler and go back on the place. And I saw her in there, and something got my attention. And I went in there. And she was out of her chair, down on the floor. She couldn't talk. She couldn't walk. She couldn't get up. And I just dialed 911 right quick.
TRIBBLE: It took nearly two hours to get Lulabelle Berry to Stone County Medical Center. Hospital pharmacist Mandy Langston was there when she arrived. Lulabelle's eyes wouldn't focus. One side of her face was drooping. Langston says a quick brain scan and a telemedicine consultation with a neurologist confirmed severe stroke.
MANDY LANGSTON: She had not one minute to spare because the timing is three-hour window. If anything else had gone, you know, astray or, you know, they didn't get her here in time, then she wouldn't have been a candidate for the drug.
TRIBBLE: The life-saving drug is Activase, an old drug that's gotten a lot more expensive recently. A year ago, Langston bought it for about $2,000 a dose. Then Langston went to restock it this year. The drug cost $8,000 a dose. But just down the road in Batesville, Ark., another hospital is paying only about $1,600 for the same drug at the same dose.
And it turns out small hospitals across the country pay more for thousands of drugs than their bigger, more urban counterparts. Congressman Peter Welch is a Democrat from Vermont. He explains, smaller hospitals can't buy those drugs through a federal drug discount program.
PETER WELCH: PhRMA's charging the fat prices to our community hospitals. And then that is putting enormous pressure on their bottom line.
TRIBBLE: The federal program requires pharmaceutical companies to sell many drugs at a deep discount to hospitals that serve a lot of low-income patients. It used to be mostly for bigger hospitals, but the Affordable Care Act allowed rural hospitals to join. Then the pharmaceutical industry trade group PhRMA went to court to guarantee their members could charge full price to the rural hospitals for drugs that are designated to treat rare diseases. And there are lots of designated drugs, even common ones like Berry's Activase. That's because of complicated federal processes governing drug approval and research, says Bill von Oehsen, a lawyer who represents hospitals.
BILL VON OEHSEN: In most cases, these hospitals are not treating patients for those rare diseases, rare conditions. But the exclusion applies to any use, even the very common uses. And so most of your cancer drugs have to be bought at a much higher price.
TRIBBLE: Some pharmaceutical companies have voluntarily offered all of their drugs at a discount to rural hospitals. Activase's owner, Genentech, has refused. A company spokeswoman said the discount program had grown beyond its original intent. And it is following the laws. Back in Stone County, pharmacist Mandy Langston knew how important it was to get Activase to Lulabelle Berry. Her grandfather suffered a stroke when she was in high school. Stone County, like many rural hospitals at the time, didn't stock Activase.
LANGSTON: If we don't keep this drug, people will die. I mean there's no, you know, if, buts about it.
TRIBBLE: Langston's grandfather died two days after his stroke. When she graduated with her pharmacy degree in 2008, Langston made it a point to get the certification needed to be in the ER.
LANGSTON: I've been in the room where these people have gotten the drug. And I've seen them, like, literally go from a vegetable to living within, you know, 30 minutes of getting the drug. So I've seen that emotional connection. I've seen the fear in their eyes.
TRIBBLE: Lulabelle Berry was speaking within minutes of getting Activase. She still struggles to get her words out as easy as she once did but otherwise has fully recovered. The 78-year-old spends her days crocheting, minding the cats and her tomato plants. And on a recent summer day, she had family photos out for sorting.
L. BERRY: Some of these are older pictures because I was doing a - we just had our reunion for the Berry family, and I was getting pictures to take to them last weekend when we had this. Now I've got to put them back together (laughter).
TRIBBLE: She is grateful to have the time to do that. For NPR News, I'm Sarah Jane Tribble.
CHANG: Sarah Jane Tribble is with our partner Kaiser Health News.
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