Friday, November 4, 2016

Volunteer Provides "Guiding Light" for Victims

By Walter F. Roche Jr

It was a day in early Fall of 2012 when Terri Lewis accompanied her son to the Vanderbilt University Medical Center where he was scheduled to undergo spinal fusion surgery that she first heard the news.
Though the first reports indicated it was probably an isolated incident, Lewis, who holds a doctorate in rehabilitation and mental health, thought otherwise.
A case of fungal meningitis, a very rare diagnosis, had been reported by Tennessee and federal health officials.
"It came across the news feed in the waiting room. The news release ended with the comment that it was expected to be a small and inconsequential problem," Lewis recalled. "I knew that couldn't possibly be right."
From that moment on Lewis was drawn deeper and deeper into the then expanding public health crisis; first advising reporters but then, as the months grew into years, becoming the back upon which dozens of outbreak victims relied for professional advice and, perhaps more importantly, a sympathetic ear.
"Terri has been our guiding light and guardian angel since day one," said Kathy Pugh, whose mother was a Michigan victim of the outbreak. "She has been a walking library of medical knowledge and support."
Lewis' conclusion that the outbreak would be anything but inconsequential became a frightening reality in the remaining months of 2012. Ultimately some 778 patients in more than 20 states were sickened by vials of fungus riddled spinal steroids shipped by the thousands to health providers across the country. Seventy-seven of those patients died.
 Lewis' interest was heightened by the fact that due to her professional interest in pain management she already knew a lot about the spinal steroids being injected into the spines and joints of patients suffering from severe back and joint pain.
"I had been working with others on the issues involved in epidural steroid injection injuries and had been preparing testimony for hearings held by the FDA (U.S. Food and Drug Administration)," Lewis said.
Lewis joined a facebook page on the outbreak set up by the Tennessean, the Nashville newspaper, and soon took over the role as a patient advocate.
She says she has tracked approximately 360 families and individuals who asked for help, even the attorneys representing some of the victims.
"I've reviewed records, assisted with social security claims, medical evaluations and functional capacity evaluations," Lewis said.
Victims attest to the value of her assistance.
Terri has helped to educate us on all medical topics related to the NECC  (New England Compounding Center) outbreak," said Michelle Palmer, an Eastern Tennessee victim of the outbreak.
"Without her and her knowledge, caring and understanding we could never have gotten through this ordeal," Palmer added.
Jona Angst, another Michigan victim, said, "When she speaks we listen and take to heart the things she says. We may not matter to many but she makes us feel loved and that we count."
"She is our voice and our warrior," said Palmer.
Joan Peay, a Tennessee victim who endured one bout of fungal meningitis only to suffer a relapse a year later, said it was after the second attack that Lewis stepped in to help her.
"I was weak, hurting and feeling abandoned by my government," Peay said. "She was a wonderful source of knowledge and encouragement. She has been a tremendous help to many, many of us."
Lewis does have a day job.  She is a professor at a school in Taiwan, a job she had lined up before the outbreak began.
She says "digital tools" enable her to maintain her role as advocate and adviser even though she is teaching in Taiwan nine months of the year.
"I will hang in there with this until there is a resolution for these individuals," Lewis said. "Professionally, I expect to follow them as long as they will let me.
"We have to capture this has a natural history that is important to understand and characterize," Lewis, the teacher, counselor, and advocate, concluded.


  1. Wally, thank you for your kind comments. We are both joined in this task and I don't think either of us will give it up until our work reaches its' natural conclusion. I freely acknowledge the help received throughout from Carl Dobs, Tom Walsh, David Perlin, Sarah Sellers, Louise Carbonneau Vermeiren and Dawn Gonzalez. This job is bigger than any one of us.

  2. Hi everyone,
    If anyone can give me a contact, for a support group, I would, truly appericeate it.
    I am lacking emotional, and moral support.
    It's kinda tough to keep my spirits up, and imagination, from letting this mess ruin me for ever, the last 4plus years have aged me worse than the pain from the stenosis, and compressed disc.
    A support group would be very helpful for my mental health.