Dying patients denied drugs
Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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.
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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.
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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.
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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."
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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.
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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.
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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."
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Photos: Compassionate use: Their stories
Compassionate use: Their stories – 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