Dying patients denied drugs

By Elizabeth Cohen, Senior Medical Correspondent

Updated 2103 GMT (0503 HKT) April 6, 2014

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.
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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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.
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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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.
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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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."
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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