Robert Stein 1924-2014

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Friday, May 30, 2008

Playing God in Washington

Three years after posturing over Terri Schiavo's right to be kept alive after brain death, members of Congress are faced with real end-of-life questions in proposed legislation to force the FDA to speed up its drug-approval process and give terminally ill patients access to investigative drugs.

Last week they had to look into eyes of a 12-year-old Maryland girl with inoperable liver cancer as her mother pleaded on her behalf.

"Finding help for a sick child should be easy, but it isn't," said Anna Tomalis' mother, who told them her daughter had been turned away from drug studies because she is not healthy enough. "For Anna, time is running out. She doesn't have years to wait for these drugs to become available."

The new bill is sponsored by Kansas Republican Sen. Sam Brownback and California Democratic Rep. Diane Watson. "What we need is a system that looks at the patient and their life-or-death situation, not at a bureaucracy and its needs," says Brownback, a melanoma survivor. "This is deadly neglect, and it can't continue."

From the other end of the political spectrum, Rep. Watson cites the grass-roots movement that demanded experimental drugs for terminally ill AIDS patients, arguing that "anyone whose diagnosis amounted to being handed a death sentence" should "have an opportunity to try these drugs."

In January, the Supreme Court let stand a ruling that the terminally ill have no constitutional right to be treated with experimental drugs.

According to Brownback, only 650 people out of 4.8 million who died of cancer were given such treatment over a recent eight-year period.

An oncologist and researcher who testified about balancing public safety with risks notes, "It takes 10 years and $50 million to develop a new drug--that's insane...Cancer patients have a sense of hopelessness. That's something human beings cannot tolerate. Hopelessness is the worst disease in the world. These patients need some hope."

The FDA will have to make a strong case for withholding it.

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