Two-year-old Utahn Caleb Fullmer is lucky - and not just because he has a new baby sister who was born Wednesday to his parents, Marcia and Greg Fullmer.

Unlike most of the 20 million Americans who have rare diseases, Caleb's parents can buy a drug to control his urea cycle disorder - a genetic disease among males causing ammonia buildup in blood. Infants with it often die within days - as did Caleb's older brother.Most drug companies cannot afford to develop drugs to combat rare diseases because they would be sold only to a few people. So in 1983, Congress passed the Orphan Drugs Act to help such research.

One of the 260 drugs developed through its programs keeps Caleb alive.

On Wednesday, Sen. Orrin Hatch, R-Utah, used Caleb as an example of the success of that act as he and others began a drive for more action to help those with "orphan diseases."

Those are rare illnesses without a parent organization, drug company or agency dedicated to treatment or research for their victims.

The National Commission on Orphan Diseases, created by legislation that Hatch sponsored in 1985, has released a two-year study saying problems plaguing efforts to combat rare disease include lack of funding for research, lack of information on such diseases causing deadly delays in proper diagnosis and patient difficulty in obtaining health insurance.

The commission recommended creating a Central Office of Orphan and Rare Diseases (COORD) to coordinate efforts against the diseases, and serve as an advocacy office for victims.

Hatch quickly endorsed that idea. "It is intolerable that Americans who are victims of these diseases, who are fighting a lonely, courageous battle, must face bankrupting doctor bills because they cannot get health insurance.

"COORD will act as their advocate before insurers and before Congress," said Hatch, who is the ranking Republican on the Senate Labor and Human Resources Committeee, which oversees health issues.

Another recommendation that came from the study that Hatch also quickly backed called for an increase from $6 million to $14 million for the grants program that helps develop drugs like the one that helps Caleb.

"This is a small investment that will reap large benefits," Hatch said. "More than 260 products have been designated orphan drugs by the Food and Drug Administration, and most of these products are for populations of fewer than 40,000 Americans. Since only 10 orphan drugs were developed during the 10 years prior to 1983, it is staggering to think how well the act has worked."