Lawmakers in a Utah Senate Health and Human Services committee approved a bill Tuesday that would allow the use of experimental drugs by patients with terminal illnesses.
For patients with terminal illnesses to get any experimental drugs, they would need to have exhausted all other treatment options and receive a recommendation from their physician. Any of these drugs would need approval from the Food and Drug Administration.
Senators in the committee heard testimony from several parents of children with untreatable diseases, including Cristina Might.
“My son Bertand Might is seven years old and he has a rare disease known as N-Glycanase deficiency. He was the first person in the world diagnosed with this disorder," said Might.
Several other children have since been identified and diagnosed with this disorder, and Might says researchers know of a drug that could help her son and others, but it’s been undergoing a lengthy testing process.
“Two years ago, if he’d been able to get access to this drug, he might actually be developing, he might not actually have seizures, we wouldn’t have to be worrying about him passing away at night," said Might.
HB 94 passed the Utah House last week and passed unanimously in the senate committee. It now moves to the full Senate for consideration.