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 the 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.”