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Tracing The Big Meningitis Outbreak Of 2012

LINDA WERTHEIMER, HOST:

This is WEEKEND EDITION from NPR News. I'm Linda Wertheimer. This weekend, we're looking back at some of the biggest stories of the year. Before 2012, few knew the first thing about compounding pharmacies - pharmacies producing drugs far from the regulatory spotlight. That changed, as contaminated pain medication, specifically moldy spinal injections, sickened hundreds across the country with a little known and dangerous form of fungal meningitis. Blake Farmer of member station WPLN reports from Nashville, where the outbreak was first discovered. It has now claimed the lives of 39 people nationwide.

BLAKE FARMER, BYLINE: The husband of Joyce Lovelace is believed to be the outbreak's first fatality.

JOYCE LOVELACE: He was hollering for me in the kitchen. He had a horrible look on his face. I'll never forget that expression. And he said, my legs don't work.

FARMER: The active 78-year-old judge walked three miles a day. He died at Vanderbilt University Medical Center before doctors really knew what they were dealing with. Lovelace testified at a congressional hearing, representing the more than 350 families with a loved one who contracted this obscure infection.

LOVELACE: My family is bitter. We are angry. We're heartbroken. We're devastated.

FARMER: Lovelace says her husband was full of life until he went to a pain clinic at Nashville's Saint Thomas Hospital to get back injections. It's a procedure not fully proven to be effective but performed at hundreds of clinics.

DR. GRAF HILGENHURST: So, the next thing I'm going to do is I'm going to numb you up, needle stick, burn.

FARMER: Dr. Graf Hilgenhurst sinks a six-inch-long epidural needle deep into the spine of a woman lying facedown. X-ray images guide the tip between two vertebrae in her neck. Hilgenhurst draws the steroid into his syringe.

HILGENHURST: Typically a milky looking white solution. You would think that you would notice if there were dark colored particles in it. You would think.

FARMER: Tainted medicine found at a compounding pharmacy in Framingham, Massachusetts had visible mold in it, according to the Food and Drug Administration. Hilgenhurst's clinic in Smyrna, Tennessee, did not receive any of the bad drugs. But as the head of the state's association of interventional pain physicians, he heard from everyone who was frantically checking stockrooms. A state health official says many didn't realize they were using compounded meds. And to be fair, says Hilgenhurst, doctors can't be held responsible for the entire supply chain.

HILGENHURST: It's like drinking the tap water. Every day you turn on the tap and you drink a glass of water. And you don't once think where does this water come from? Has it been filtered? Are there people supervising the process? Do we know it's safe? You just assume it must be good. It's in my tap.

FARMER: The fungal meningitis outbreak has concerned folks in charge of ordering injectable medicines.

DR. BILL GREENE: Let's put it this way, I have lost a lot of sleep.

FARMER: Dr. Bill Greene says St. Jude Children's Hospital in Memphis depends on compounding pharmacies for smaller dosages or preservative-free products. In a growing number of instances, it's a matter of national shortages with FDA-approved versions.

GREENE: This is a major issue for us right now. It's not only the question of supply but the question of how do we make sure the quality of the supply is sufficient.

FARMER: Greene says he's now thinking even harder before turning to a compounder.

MARK BINKLEY: I feel like a rat in a box and everybody's taking potshots.

FARMER: Pharmacist Mark Binkley runs a much smaller-scale facility than the New England Compounding Center, producing batches of 10 doses instead of thousands. But he says clients have asked for proof he's running a clean ship.

BINKLEY: Most of the corporate sites have requested documentation from us since this started.

FARMER: Lawmakers and regulators in Washington have been studying what needs to be done since compounders fall in a gap between state and federal oversight. Binkley says he worries about a rush to regulate, though he sees a need to clearly identify when a medicine has been compounded.

(SOUNDBITE OF PILLS SPILLING OUT)

FARMER: Willie Mae Devine certainly had no idea she was getting a compounded drug. This 71-year-old has quit her job. She now walks with a cane and takes a fistful of anti-fungal medication every day.

WILLIE MAE DEVINE: These are 50 milligrams, and these are, I think, 100 or 200 or something.

FARMER: Devine had a fungal infection around her spine but was spared developing full-blown meningitis. Still, her confidence in the health care system is shaken.

DEVINE: I'm afraid of the doctors now. I'm almost afraid of the medication.

FARMER: But for now, Devine has little choice but to trust her physicians. Three months after her back injections-gone-bad, she's still seeing neurologists and infectious disease experts nearly every day. For NPR News, I'm Blake Farmer in Nashville. Transcript provided by NPR, Copyright NPR.