Compassionate use: Their stories

Published 10:44 PM ET, Sat April 5, 2014
Compassionate use - Christian BarkerCompassionate use - Christian Barker
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When leukemia patient Christian Barker, center, received a bone marrow transplant, the donor cells attacked his body. By the time he was given permission to use an experimental drug, it was too late, his mother says. Christian died at age 14. "What haunts me is how my child suffered so much," says Sandy Barker. photo from mother Sandy Baker
Abigail Burroughs died of cancer in 2001 at age 21 while seeking compassionate use. Her dad founded an advocacy group, the Abigail Alliance for Better Access to Developmental Drugs in her memory. "Why should I quit now? There are others out there as precious as Abigail," says her father, Frank Burroughs. photo from Dad
When he was 6, Cort Kelley was diagnosed with a rare brain tumor. Surgeries, chemotherapy, and radiation didn't help, so his parents fought for months for compassionate use, but permission never came through. Cort died at age 8. "The drug companies don't promote compassionate use, so who's left to argue on behalf of the patient? It's up to the parents to try to save their kid," says Cort's father, Brian Kelley. photo from Brian Kelley
Max Nunn was diagnosed with medulloblastoma, an aggressive brain tumor. He received compassionate use a month before passing away at age 7. "I could tell it wasn't helping," says Max's dad, Thomas Nunn. "It was just making him miserable, so the last week he became so sick from taking it I decided to quit giving it to him." photo from Dad
Nathalie Traller, 15, has been fighting a rare cancer called alveolar soft part sarcoma (ASPS) for two years, but many clinical trials won't take her because she's under 18. Three companies have rejected her for compassionate use. "I fight for the dreams of others, my friends. I fight for the dreams I have," she says. photo from mom Vicki
Andrea Sloan died three months ago after a very public battle with a cancer company for their drug. "I think they're scared they'll give it to me and God forbid I die, and it'll make their drug look bad," she said at the time. After several months, another company gave her a similar drug. family photo
Mikaela Knapp was diagnosed with stage 4 kidney cancer in 2013, was rejected from several clinical trials, and is now seeking compassionate use of a targeted cancer therapy. "I married my high school sweetheart after we graduated from college in 2011," writes husband Keith Knapp. "Two years later, she was diagnosed with kidney cancer." family photo
Nick Auden, who was diagnosed with advanced melanoma, died in November 2013 while fighting for access to a cancer drug, which was later offered to other patients under compassionate use. "While we're heartbroken ... we're relieved that other families struggling with late stage melanoma will now have access to a treatment that may save the life of their loved ones," writes his wife, Amy Auden. "YouTube/Save Locky's Dad"
Campbell Hoyt, 7, has been battling cancer of the central nervous system since 2009. She's had seven brain surgeries, a spine surgery, 116 radiation treatments, and six chemotherapy treatments including two clinical trials. Three weeks ago her parents asked a company for compassionate use of their experimental targeted cancer drug. family photos