< The hospital ran out of her child's cancer drug. Now she's fighting to end shortages

MARY LOUISE KELLY, HOST:

The vast majority - 90% - of the medications that Americans take are generic. And unlike pricey brand-name drugs, generics are usually cheap. In fact, they are often too cheap for manufacturers to turn profits, even for making life-saving medicines. As a result, the industry has atrophied for decades as drug shortages worsen. Meanwhile, one woman is finding workarounds to help desperate patients, as NPR's Yuki Noguchi reports.

YUKI NOGUCHI, BYLINE: Laura Bray had no idea the generic drug market was broken until four years ago, when her 9-year-old girl, Abby, missed chemotherapy because a $10 drug ran out.

LAURA BRAY: And we were told that the most important thing that we could do as parents to help her survive was compliance with the drug regimen - every single day, every single time.

NOGUCHI: Yet there was none to be had. At the time, Bray studied supply chains and taught business at a Tampa community college, so she knew which questions to ask. Who makes how much of the drug Abby needs? When's the next shipment? And does anyone have unused doses they could share? But no one could tell her.

BRAY: Is there a public, available, transparent place with all of those answers in the supply chain? The answer is no.

NOGUCHI: Much of that information is considered trade secret. As a result, patients, doctors, pharmacists and even regulators are left guessing when, if or how a drug shortage might end. That outraged the mother of three.

BRAY: I could not believe that our pharmaceutical supply chain, the supply chain that fills the hands that save our people, was not redundant enough, and our tennis shoe supply chain was better managed.

NOGUCHI: Terrified, Abby Bray asked whether all that meant she would die. Her mother leveled her eyes at her middle child and said...

BRAY: We don't know, but I'm going to try to find it. And sometimes, in trying, extraordinary things happen.

NOGUCHI: Once they lose patent protection, generic medicines are often sold in bundles. Hospitals, pharmacists or patients cannot compare a particular drug's quality against that of another maker. So generic manufacturers compete solely on price. That's created a race to rock-bottom prices, making it hard for them to stay in business. Generic drug maker Akorn shut down in bankruptcy this year. Teva and others pared their product lines. Fewer factories means more frequent shortages.

MARTA WOSINSKA: These shortages are a self-inflicted wound.

NOGUCHI: Marta Wosinska studies health policy at the Brookings Institution. She says it's clear the manufacturers need to make more money to stabilize. The more difficult question is, how? She argues the government should financially reward hospitals able to provide more reliable supplies of drugs.

WOSINSKA: That requires us to be forward looking and really changing dynamics in the whole system.

NOGUCHI: Such an overhaul would take time. And Abby Bray's treatment couldn't wait, so her mother worked the phones - scouring for any hospital, researcher or cancer center with spare drug. One distributor, McKesson, told Bray it would transport doses to her daughter if she located any. Then she and friends called hundreds of children's hospitals until finding unused vials.

BRAY: And then just, like, duct taping together solutions. It's insane.

NOGUCHI: The initial scramble left Bray grateful, but not relieved. She thought of other patients facing shortages. She posted advice on Facebook, then set up a website.

BRAY: And then that's when it really kind of took off.

NOGUCHI: Desperate calls and emails streamed in, and Angels for Change, Bray's one-woman nonprofit, was born. At first, she handled each, patient by patient. But as she got to know hospital pharmacists, drug distributors and many others along the supply chain, Bray found she could fill a whole hospital's urgent drug needs, for example. Now, four years in, Bray has eyes and ears across the industry. If a factory falters or closes, her sources help her locate backup inventory or estimate future shipments.

BRAY: With the other manufacturers, I'm asking, will you share for patients in dire need? Will you hold back a small amount of supply, 1% of that batch?

NOGUCHI: Even big players in pharmaceuticals agree - Bray is the industry's accidental expert. She's become a human version of the database she looked for when her daughter's shots first ran out. She is the go-to person for patients facing dire drug needs. But as she points out, there's nothing automated about the painstaking work.

BRAY: I wish I had a software system.

NOGUCHI: She took a pay cut and stopped teaching to work full time for Angels for Change. It's now funded by individuals and the McKesson Foundation. She says she wishes she could return to her old life, but can't because she's haunted by the thought of other families facing shortages.

BRAY: There are moments in your life that are just burned in your memory, you know, and that change you. And some of that change can be for the better, but all of that change comes with trauma.

NOGUCHI: At first, Bray knew all the people she helped - a 14-year-old violinist, a 5-year-old Spider-Man superfan, her own Abby, now 13, energetic and healthy. Bray's even gotten to a point where she can predict shortages and has found ways to avert them. She says that's helped potentially hundreds of thousands of others. Still, Bray feels restless. The responsibility feels heavy. Her system relies on her.

BRAY: If I was hit by a bus tomorrow, it would all go away.

NOGUCHI: So Bray wants to see permanent reform of the whole system, and she's optimistic. She says more policymakers and industry players seem to realize the urgent need for collective action. It's daunting, she says, but hopes they can look to Angels for Change as proof of what can be done.

BRAY: What I hope it shows everyone is that this is possible to fix.

NOGUCHI: Yuki Noguchi, NPR News.

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