by guest blogger Diana Zuckerman, PhD, president of the National Center for Health Research
There’s a new mystery unfolding online, and reading it could save your life or the life of someone you know.
A series of posts on Letters to Annie start with a mother reminiscing in a letter to her daughter, Annie Ammons. At the end of the first letter, her mom says, “If only I hadn’t come home that Saturday morning and found you unresponsive in your bed. If only it hadn’t come—that day that changed our lives.”
Annie was young, athletic, a physical trainer, and a new lawyer. She ate healthy foods and lived a healthy life. But she started having symptoms that her doctors couldn’t figure out—hair loss, unexplained weight gain, and severe headaches. Then suddenly, she died in her sleep. Her devastated family was left trying to figure out what had happened. At the same time, family members had to deal with police suspicions that perhaps someone in the family had murdered her.
Eventually, Annie’s family found out what killed her, and was devastated anew to realize it was completely preventable and that her doctors should have recognized the cause—which would have saved Annie’s life. But knowing the cause of her death and getting doctors and federal officials to do something about it were two very different things. When Annie’s family asked for my help, I thought raising awareness at the Food and Drug Administration (FDA) and in Congress would be easy—I’ve worked on similar issues for more than 20 years. How wrong I was.
We reached out to a well-respected member of the Senate who was known for her commitment to women’s health. She was the perfect choice because the Ammons family lived in her state. Her staff expressed sympathy, but responded by doing the minimum—a letter to the FDA commissioner that asked questions but did not demand any changes that would save lives.
We reached out to the highest-level FDA officials, who were already well aware of the risks of the FDA-approved medication that killed Annie. They had already made up their minds to do almost nothing, and continued on that path of indifference.
I worked with a physician to write an article for an ob-gyn medical journal, to help educate doctors about the risks of a medication that they widely prescribe. I’ve published many articles in well-respected medical journals, but this one received condescending reviews from physicians who seemed more interested in defending a product they prescribe than in saving the lives of their patients.
We reached out to reporters, and several wrote excellent articles. But somehow the story and the issue never got much attention.
Annie’s family members were horrified at the indifference they (and we) met at almost every step of the way. But they refused to give up—they are determined that Annie’s death should not be in vain and that their efforts should help other young women and other families.
The result is LetterstoAnnie.org.
It starts with the mystery of Annie’s death, with a new letter to Annie every week providing new clues. What will be revealed in the letters to come? One by one, the clues will build up until the family finally finds out what happens. Then, the family will look for the “why” and “how” that can explain the cause. The family will seek help and answers from various government officials, and you will see how those officials responded.
You will be inspired by Annie’s family’s efforts.
And most important, Letters to Annie will provide information that could save your life or the life of someone you love.
Diana Zuckerman is the president of the National Center for Health Research. She received her doctorate from Ohio State University and was a postdoctoral fellow in epidemiology and public health at Yale Medical School. After serving on the faculty of Vassar and Yale and as a researcher at Harvard, Dr. Zuckerman spent a dozen years as a health policy expert in the U.S. Congress and a senior policy adviser in the Clinton White House. She is the author of five books, several book chapters, and dozens of articles on websites and in medical and academic journals, and newspapers.