Her Daughter Died After Taking a Generic Version of a Lifesaving Drug. This Is What She Wants You to Know.
Who benefits from this decision?
When I first learned that a critical medication for transplant patients — one that keeps them alive — had generic versions that might not be effective, I called a specialty pharmacist at a hospital in Virginia. Adam Cochrane had written a journal article about the problems with the generics.
The drug is called tacrolimus, and it keeps a transplant patient’s body from rejecting a donated organ. I was surprised to hear that Cochrane had several patients he thought had died in part because their generic tacrolimus hadn’t worked right.
He told me about Hannah Goetz, though he didn’t divulge her name initially. She would become the focus of a story I published recently that’s part of a larger investigation into how the Food and Drug Administration has for years allowed risky drugs into your medicine cabinet.
Hannah was 17 when she had a double lung transplant because of complications from cystic fibrosis, a genetic condition that fills the organs with mucus. She died in 2023 at just 21 years old, he said. And she had been taking one of the bad generics.
He agreed to see if her mom would be willing to chat with me. When I met Holly Goetz at her home in Portsmouth, Virginia, she was open and personable. She was angry, too. Hannah had died too young. She welcomed the chance to tell her daughter’s story. “I was excited, because someone was going to research this issue,” Holly told me recently. “Possibly turn things around.” Before we’d met, she’d been told she didn’t have any legal recourse to sue over Hannah’s death despite the issue with the generic. Lawyers told Holly it was impossible to draw a straight line from Hannah’s death to a generic manufacturer.
I knew that in telling Hannah’s story in detail, I’d also be telling the larger story about tacrolimus, and larger still about the systemic failures at the FDA. ProPublica’s reporting typically focuses on exposing wrongdoing in the hopes of spurring change. I wasn’t sure whether our reporting would bring Holly the accountability she yearned for, at least not in a tangible way. I hoped Holly’s experience sharing an intimate, tragic part of her life wouldn’t end up being a disappointment.
Holly had been by Hannah’s side, advocating for her since she was diagnosed with cystic fibrosis and through the four-year journey after the transplant. Over several hours as the sky turned dark that February day, she took me through all that happened — from Hannah’s sudden need for a transplant where she almost died, to her doing well enough to take college courses and enjoy having her first (and only) real boyfriend, to her unexpected decline just three and half years after the successful transplant.
“It was hard, because I was reliving everything over again,” Holly said of our first interview at her home. “Then again, I got to talk to someone else about Hannah, who she was, not just her in the hospital.”
As she showed me Hannah’s peach bedroom that day, with its dozens of stuffed animals and the hair bows she wore every day when she was in school, Holly shared that when Hannah was a little girl she started sticking her tongue out in pictures. Holly laughed, saying she thought for sure Hannah would …
Who benefits from this decision?
When I first learned that a critical medication for transplant patients — one that keeps them alive — had generic versions that might not be effective, I called a specialty pharmacist at a hospital in Virginia. Adam Cochrane had written a journal article about the problems with the generics.
The drug is called tacrolimus, and it keeps a transplant patient’s body from rejecting a donated organ. I was surprised to hear that Cochrane had several patients he thought had died in part because their generic tacrolimus hadn’t worked right.
He told me about Hannah Goetz, though he didn’t divulge her name initially. She would become the focus of a story I published recently that’s part of a larger investigation into how the Food and Drug Administration has for years allowed risky drugs into your medicine cabinet.
Hannah was 17 when she had a double lung transplant because of complications from cystic fibrosis, a genetic condition that fills the organs with mucus. She died in 2023 at just 21 years old, he said. And she had been taking one of the bad generics.
He agreed to see if her mom would be willing to chat with me. When I met Holly Goetz at her home in Portsmouth, Virginia, she was open and personable. She was angry, too. Hannah had died too young. She welcomed the chance to tell her daughter’s story. “I was excited, because someone was going to research this issue,” Holly told me recently. “Possibly turn things around.” Before we’d met, she’d been told she didn’t have any legal recourse to sue over Hannah’s death despite the issue with the generic. Lawyers told Holly it was impossible to draw a straight line from Hannah’s death to a generic manufacturer.
I knew that in telling Hannah’s story in detail, I’d also be telling the larger story about tacrolimus, and larger still about the systemic failures at the FDA. ProPublica’s reporting typically focuses on exposing wrongdoing in the hopes of spurring change. I wasn’t sure whether our reporting would bring Holly the accountability she yearned for, at least not in a tangible way. I hoped Holly’s experience sharing an intimate, tragic part of her life wouldn’t end up being a disappointment.
Holly had been by Hannah’s side, advocating for her since she was diagnosed with cystic fibrosis and through the four-year journey after the transplant. Over several hours as the sky turned dark that February day, she took me through all that happened — from Hannah’s sudden need for a transplant where she almost died, to her doing well enough to take college courses and enjoy having her first (and only) real boyfriend, to her unexpected decline just three and half years after the successful transplant.
“It was hard, because I was reliving everything over again,” Holly said of our first interview at her home. “Then again, I got to talk to someone else about Hannah, who she was, not just her in the hospital.”
As she showed me Hannah’s peach bedroom that day, with its dozens of stuffed animals and the hair bows she wore every day when she was in school, Holly shared that when Hannah was a little girl she started sticking her tongue out in pictures. Holly laughed, saying she thought for sure Hannah would …
Her Daughter Died After Taking a Generic Version of a Lifesaving Drug. This Is What She Wants You to Know.
Who benefits from this decision?
When I first learned that a critical medication for transplant patients — one that keeps them alive — had generic versions that might not be effective, I called a specialty pharmacist at a hospital in Virginia. Adam Cochrane had written a journal article about the problems with the generics.
The drug is called tacrolimus, and it keeps a transplant patient’s body from rejecting a donated organ. I was surprised to hear that Cochrane had several patients he thought had died in part because their generic tacrolimus hadn’t worked right.
He told me about Hannah Goetz, though he didn’t divulge her name initially. She would become the focus of a story I published recently that’s part of a larger investigation into how the Food and Drug Administration has for years allowed risky drugs into your medicine cabinet.
Hannah was 17 when she had a double lung transplant because of complications from cystic fibrosis, a genetic condition that fills the organs with mucus. She died in 2023 at just 21 years old, he said. And she had been taking one of the bad generics.
He agreed to see if her mom would be willing to chat with me. When I met Holly Goetz at her home in Portsmouth, Virginia, she was open and personable. She was angry, too. Hannah had died too young. She welcomed the chance to tell her daughter’s story. “I was excited, because someone was going to research this issue,” Holly told me recently. “Possibly turn things around.” Before we’d met, she’d been told she didn’t have any legal recourse to sue over Hannah’s death despite the issue with the generic. Lawyers told Holly it was impossible to draw a straight line from Hannah’s death to a generic manufacturer.
I knew that in telling Hannah’s story in detail, I’d also be telling the larger story about tacrolimus, and larger still about the systemic failures at the FDA. ProPublica’s reporting typically focuses on exposing wrongdoing in the hopes of spurring change. I wasn’t sure whether our reporting would bring Holly the accountability she yearned for, at least not in a tangible way. I hoped Holly’s experience sharing an intimate, tragic part of her life wouldn’t end up being a disappointment.
Holly had been by Hannah’s side, advocating for her since she was diagnosed with cystic fibrosis and through the four-year journey after the transplant. Over several hours as the sky turned dark that February day, she took me through all that happened — from Hannah’s sudden need for a transplant where she almost died, to her doing well enough to take college courses and enjoy having her first (and only) real boyfriend, to her unexpected decline just three and half years after the successful transplant.
“It was hard, because I was reliving everything over again,” Holly said of our first interview at her home. “Then again, I got to talk to someone else about Hannah, who she was, not just her in the hospital.”
As she showed me Hannah’s peach bedroom that day, with its dozens of stuffed animals and the hair bows she wore every day when she was in school, Holly shared that when Hannah was a little girl she started sticking her tongue out in pictures. Holly laughed, saying she thought for sure Hannah would …
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