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A story we published yesterday revealed how the University of Illinois at Chicago recently had to repay the federal government $3.1 million after the National Institute of Mental Health determined one of the school’s star faculty members violated grant protocols — and put vulnerable kids at risk.
UIC child psychiatrist Mani Pavuluri had received the grant funds from NIMH to study how the powerful drug lithium affects the brain functions of adolescents with bipolar disorder. But she violated several guidelines, including enrolling children younger than 10 in the trial though it was supposed to only include 13- to 16-year-olds.
UIC was at fault, too. It failed to properly oversee her work, according to NIMH.
We believed it was important to talk with Pavuluri’s patients and their parents to find out what they knew.
But identifying families was — and still is — challenging. Patient names are private under state and federal laws, and any information the university thought could possibly identify them was redacted from documents we requested under the Freedom of Information Act.
Without names, we were essentially starting with nothing.
Still, we ultimately tracked down and talked with families of three of Pavuluri’s patients.
How did we do it? You might be surprised to learn an Amazon book review was one clue we used. Here’s how it all came together:
We found the first family when engagement reporter Logan Jaffe spotted a 2011 report by ABC 7 Chicago about one of Pavuluri’s other studies — not the lithium one. The report discussed Pavuluri’s work imaging children’s brains to try to determine if they had bipolar disorder or attention deficit hyperactivity disorder, and included a call-out to find more research subjects. It included testimony from two patients who were already enrolled, one of whom was Luke Mallard.
“It’s going to be neat to see how his brain changes over the next four years,” his mother, Cynthia, said in the report.
So I called Luke’s mother, expecting to hear about the family’s positive experience. Instead, she sheepishly told me that she had enrolled Luke in the clinical trial because it was the only way she could get an appointment to see Pavuluri. Then, before I even asked about the lithium study, she shared her regrets that she had consented to Luke taking the drug when he was just 10.
“That was the first product she put him on,” she recalled recently. “When he was on the lithium, he turned into a different kid … I told Dr. Pavuluri, ‘I don’t care what you have to do, get him off this stuff.’”
I found the second family with Amazon’s help.
I knew Pavuluri had written a book about bipolar disorder, so I went to Amazon to see if anyone had written a review and included information that would help me track them down. I lucked out: A mother gave the book — “What Works for Bipolar Kids: Help and Hope for Parents” — a five-star review.
When I called her, she raved about Pavuluri — a perspective that was important to include in the story. Pavuluri has treated hundreds of children and has overseen the care of thousands more as a professor at the University of Illinois College of Medicine and founder of the institution’s Pediatric Mood Disorders Program.
“She was a lifesaver and she is still and there is nobody like her that we found anywhere,” the mother, who did not want to be identified to protect her daughter’s privacy, told me when I called.
Facebook helped me find the third family.
I’m a member of several Facebook parenting groups and I decided to search them to see if anyone mentioned Pavuluri’s name.
The search turned up a post from a mother who recently asked for recommendations for a doctor for her child with mental health issues.
Rebecca Sikorski responded and recommended Pavuluri.
I sent Sikorski a Facebook message, asking if we could talk. She wrote back that she could no longer recommend Pavuluri. When we spoke on the phone, she explained why.
I told her about the research problems, and she said she wished she had known about them before taking her daughter to see Pavuluri.
In the end, I ended up finding three parents through very different methods. Each of their perspectives are important to the story. None of them were upset we had reached out.But those are just three people among hundreds who may be directly affected by Pavuluri’s misconduct. We could use your help spreading the word about this story, with the hopes of it better reaching those individuals.
Are you part of any parenting group — on social media or otherwise?
Are you in the field of medical research?
Are you a teenager who knows someone who may be suffering from bipolar disorder, or may be yourself?
Are you someone who just wants to help?
1.) Copy and paste this text into your social and/or professional networks:
Dr. Mani Pavuluri, a child psychiatrist formerly at the University of Illinois at Chicago, was found to have committed misconduct in her research studies on the effect of lithium on adolescents with bipolar disorder. If you or someone you know is a current or former Pavuluri patient, @ProPublica Illinois wants to hear from you. Email [email protected]. Full story: propub.li/2KhgXT1
2.) Share this graphic (download here) to encourage people who may have participated in the studies to email us.
3.) And if you are reading this right now and have participated in Pavuluri’s research, please email me at [email protected].
If you have questions or an idea on how to best get this story to patients, don’t hesitate to email me, either.
Thanks for reading!