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Continued: Drug companies profit from orphan drugs

  • Article by: MICHAEL J. BERENS and KEN ARMSTRONG , Seattle Times
  • Last update: November 16, 2013 - 6:33 PM

Doctors supplemented chemotherapy with Avastin, because clinical trials had shown the drug could ease symptoms and prolong life. By late spring of 2012, treatment had stunted Violet’s tumor. But a month later, the tumor spread across her brain.

The O’Dells received a miracle, just not the one they most wanted. All their medical expenses not covered by insurance were paid through a program at Seattle Children’s for uncompensated care. A private charity made their mortgage payments. In Sequim, businesses and a school staged fundraisers.

“It was unbelievable,” Jessica O’Dell says. “We thought we’d lose everything. So many people opened their hearts.”

In October 2012, Violet died in her sleep at home, surrounded by family.

Avastin, the drug that was supposed to help Violet live longer, was studied in at least 400 clinical trials over 16 years. But it wasn’t until this year that a trial with more than 600 patients — the drug’s first double-blind study for newly diagnosed brain cancer — found no difference in survival between those patients who got the drug and those given a placebo.





  • related content

  • As medical expenses for their daughter Violet's cancer treatment quickly surpass income, Jessica and Jeramie O'Dell are resigned to losing their Sequim, Wa., home. (John Lok/Seattle Times/MCT)

  • Violet O’Dell was 10 when her Seattle doctor told her she had a rare, incurable tumor at the base of her brain. Doctors offered an “orphan drug” that came with hopes of extending her life by a month or more, but at a cost of up to $50,000. Violet’s parents, Jessica and Jeremy O’Dell, below, faced the prospect of losing “our home, everything we own.”

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