by Gregory Conko
August 23, 2008

Anna Tomalis was a bright, pretty, 13-year-old girl who liked horseback riding and soccer. During the last few years, she rarely had a chance to think about those things. Since September 2005, Anna battled cancer. And, instead of wringing all she could out of childhood, this courageous teenager tried to get members of Congress to act like adults.

Anna had embryonal sarcoma, a rare form of liver cancer. Surgery and chemotherapy seemed to work at first, but the tumors came back. In March of this year, doctors told her there was nothing more they could do.

She and her parents didn’t give up, though. With a little research, they discovered a number of experimental drugs that show promise in treating soft-tissue sarcomas like Anna’s, including one called Deforolimus, developed jointly by the drug companies ARIAD and Merck. Unfortunately, Anna was too young and too sick to be admitted to the clinical trials in which she might have gained access to one of those drugs. And the Food and Drug Administration (FDA) very rarely grants so-called compassionate-use exemptions to administer unapproved medicines outside the clinical testing process.

To read the rest of Greg Conko's piece in the Wall Street Journal click here.

Check out Greg Conko and CEI Studio's video about Anna here.