When I first learned that an important drug for transplant patients, the drug that keeps them alive, was a generic drug that might not work, I called a specialty pharmacist at a hospital in Virginia. Adam Cochran was writing a magazine article about the issue of generic drugs.
This drug is called tacrolimus, and it prevents the transplant patient’s body from rejecting the donated organ. Cochrane was surprised to hear that many patients thought they had died because generic tacrolimus did not work well for them.
He told me about Hannah Goetz, but at first he didn’t reveal her name. She will be the focus of an article I recently published. The article is part of a larger investigation into how the Food and Drug Administration has kept dangerous drugs in medicine cabinets for years.
At age 17, Hannah underwent a double lung transplant due to complications from cystic fibrosis, a genetic disease that causes organs to fill with mucus. She reportedly passed away in 2023 at just 21 years old. And she was on one of the bad generic drugs.
He agreed to see if her mother would talk to me. When I met Holly Goetz at her home in Portsmouth, Virginia, she was open and personable. She was also angry. Hannah died young. She welcomed the opportunity to tell her daughter’s story. “I was so excited because someone was going to study this problem,” Holly told me recently. “Maybe we can turn things around.” Before we met, she had been told she had no legal recourse to sue over Hannah’s death, despite problems with generic drugs. Lawyers told Holly that it was impossible to draw a straight line from Hannah’s death to generic drug manufacturers.
I knew that by telling Hannah’s story in detail, I would also be telling a larger story about tacrolimus and an even larger systemic failure at the FDA. ProPublica’s reporting typically focuses on exposing wrongdoing in hopes of spurring change. I didn’t know if our reporting would bring Holly the accountability she wanted, at least in a tangible way. I hoped that Holly’s experience of sharing such an intimate and tragic part of her life would not end in disappointment.
Holly has been by Hannah’s side and advocated for her since she was diagnosed with cystic fibrosis and for the four years following her transplant. For several hours as the sky darkened that February day, she told me everything that had happened. From Hannah’s sudden need for a transplant and near death, to her high enough grades to take college classes and enjoy life with her first (and only) real boyfriend, to her unexpected decline just three and a half years after her successful transplant.
“It was tough because I was reliving everything all over again,” Holly said of her first interview at home. “Once again, I was able to tell others not just about Hannah in the hospital, but about the kind of person she was.”
That day, Holly showed me Hannah’s peach bedroom. There were dozens of stuffed animals and a hair bow she wore every day when she went to school. Hannah shared a story about how when she was little, she started sticking her tongue out in pictures. Holly was confident Hannah would get over the habit, but laughed that it had become her signature pose. One of those photos now hangs in the rearview mirror of Holly’s car, one of many touchstones. Pictures and memorabilia of Hannah are displayed throughout the house. Walking into Holly’s bedroom, I was honored to see a pink urn with angel wings containing Hannah’s ashes.
In our conversation, I realized that my reporting gave me access to important details about Hannah’s death that Holly didn’t know about. I was not happy to be the messenger to inform her that Hannah had not been taking just one suspected generic version of tacrolimus, but actually two, and that she had the misfortune of only taking the one that her doctor, pharmacist, or FDA deemed problematic. Holly’s eyes widened. I also had to share that just two months after Hannah passed away, the FDA revoked the generic drug status of a version.
The makers of the generic drug Hannah was taking, Accord and Dr. Reddy’s, both maintain that their tacrolimus is safe and effective. An Accord spokesperson said in a statement that the company cannot comment on individual cases but is “committed to patient safety, product quality and regulatory compliance.” Dr. Reddy’s said in a statement that it had not received any complaints “indicating concerns for patient safety.”
The next day, on the three-hour drive back to Washington, D.C., where I live, I called one of ProPublica’s editors in chief, Tracy Weber, a longtime acquaintance. I cried as I recounted my conversation with Holly. One of the inevitable aspects of my job is that I often ask people about the worst thing that has happened to them. In my 20 years as a reporter, a good chunk of which was spent covering the wars in Iraq and Afghanistan, I’ve sat at many kitchen tables with grieving mothers. But it was my first time speaking to Holly as a mother myself. Her sadness gave me another shock.
For the next nine months, I would be a constant presence in Holly’s life. We texted hundreds of times. She dug up old photos and videos and gave me access to Hannah’s private Instagram account. One of the most difficult moments was listening to a recording Holly sent shortly before her death of doctors telling Hannah that she would not be able to have a second transplant.
An investigative reporter’s question is never just, “Tell me about your loved one.” We take great care in our work and require all receipts. I had to hire Holly to help me with my report, which took quite a while.
To write this story I had to closely examine the four years of treatment. That meant asking Holly to track down two hospital records and, importantly, the pharmacy where Hannah got all her medication. It wasn’t an easy job.
Because Hannah was an adult at the time of her death, Holly was not automatically entitled to her records. Before her death, Hannah had signed an advance directive giving Holly power of attorney, including the power to request records, but Holly still had no access.
She hired a lawyer friend to obtain Hannah’s hospital records on my behalf and had to attend probate court. “It was ridiculous what I had to go through to get them,” Holly said. The first time I asked about the record was in February. It took until May until she was appointed executor of Hannah’s estate, and then several more months for the hospital and pharmacy to fulfill Holly’s requests and send her the records. It wasn’t until July.
There are over 13,000 pages, all of which she shared with me. Sometimes I had to ask Holly uncomfortable questions because of the record. For example, why didn’t Hannah take her pancreatic medication continuously? Does that mean she didn’t take tacrolimus either? (Answer: Holly was so adamant about ensuring her daughter took tacrolimus that she FaceTimed her daughter when she brought the medication home from home because she didn’t like the way the pancreatic medication felt.) Holly was unfazed by even the toughest questions. She and Hannah were similar in that way. I wasn’t intimidated by the world. Holly has made my job so much easier. She didn’t need to.
Every time I had to reach out to her, I hesitated because I thought it would be uncomfortable to text her during the day about Hannah. How did Holly feel when she checked her phone during a break from teaching high school students and received a message that took her back to Hannah’s last days in the hospital?To my relief, Holly said she looked forward to messages and calls from me later. “I love sharing everything about Hannah,” she said.
Holly said she agreed to speak with ProPublica because she thought talking to me and the resulting story might create a sense of closure. Was it? I asked her.
“Yes, because more people know what actually happened,” she said. “True story.”
