“It was 67 weeks ago this weekend that Emily died. In that 67 weeks I have learned so much that makes me sick to stomach,” Alicia Stillman says of her daughter Emily.
In 2013, Emily – a 19-year-old college sophomore – called her mother to complain of a headache. Less than 36 hours later, Emily was in a Michigan hospital, where she died of a meningitis B infection. A vaccine for the condition, Bexsero, existed at the time and could have saved Emily’s life.
“I can tell you story after story after story about real people that this happens to,” says Alicia Stillman. “Why aren’t we getting this vaccine?”
The answer is simple: the FDA. While Europe, Australia and Canada have all approved Bexsero, our own unaccountably sluggish regulators have failed to approve the drug in a timely manner, effectively condemning Emily and others to death.
After vowing to become her daughter’s voice, Alicia has begun taking Americans to Canada to receive the vaccine.
In 2012, 7-year-old Emily Whitehead conquered acute lymphoblastic leukemia after her parents enrolled her in a gene therapy trial at the Children’s Hospital of Philadelphia. Emily was the first child in the U.S. to receive this short of treatment.
Yet oncologists in China have been treating patients with gene therapy for several years: some Americans, like Arthur Winiarski, have traveled there in order to conquer otherwise terminal cancer.
China’s FDA approved Gendicine – the therapy that cured Winiarski – for commercial availability years ago. Our own FDA has yet to approve a single therapy product.
It’s unnerving to contemplate the number of Americans who, between Winiarski’s treatment and Whitehead’s, needlessly died because the FDA denied them access to cures that could have saved their lives.
[about_ian]
