"Right to Try" Bill Aims to Help Terminally Ill in Del. - WBOC-TV 16, Delmarvas News Leader, FOX 21 -

"Right to Try" Bill Aims to Help Terminally Ill in Del.


DOVER, Del. (WBOC) - Giving terminally-ill people easier access to experimental drugs that just may save their lives is the aim of a bill introduced Thursday in Delaware.

The idea is called "Right to Try."

It gives terminally-ill patients, who are out of other options, the right to try experimental drugs that have not gotten final FDA approval. It can take years for a drug to get through the multi-phase approval process. The bill would make it easier for a patient, with medical supervision from their doctor, to try a medicine that's passed at least the first approval phase.

It is possible currently for people to get drugs like this. That process goes through the FDA. And it can take a very long time to play out. That is time terminally-ill people may not have.

"We think the current process for the FDA doesn't - isn't working right now. And, and the states are going to step up," said Sen. Colin Bonini, R-Dover, who is sponsoring Delaware's "Right to Try" bill. The bill would let them get around that process.

Clinton Moore is the father of a nine-year-old boy, Chandler, who has an extremely rare and eventually terminal illness called cystinosis.

"Basically, he has trouble getting cystine - which is an amino acid - out of his blood cells. It accumulates into a crystal. Then it attacks all the organs of his body."

It is especially hard the eyes and kidneys. Clinton said Chandler was lucky enough a number of years ago to get into a clinical trial for a drug to help his eyes.

But many people aren't so lucky. In fact, according to the Goldwater Institute, the conservative think-tank spear-heading "Right to Try" initiatives across the country, only three percent of patients get into clinical trials.

"That leaves 97 percent of people suffering from a terminal condition without access to those drugs," said Kurt Altman, who helped draft the model legislation the Goldwater Institute is floating to state lawmakers.

Those people can have a hard time getting the experimental drugs that could save their lives. Dr. Priya Singh at Kent General Hospital has seen first hand how hard it can be to get those not-fully-approved medicines.

"There are a lot of obstacles in obtaining that," she said. "And in my personal experience, I haven't been successful in obtaining some of those."

Sen. Bonini wants to make things much easier for terminally-ill Delawareans.

"I think it will be a, uh, very good tool in the tool box for families for those families that are unfortunately facing this terrible situation."

Clinton says he'd like to be able to use that tool if it came to it with his son.

"If our doctors told us that we had no other choice, and this was the only hope for our son, I would definitely consider using these drugs," he said.

The FDA has taken no position on "Right to Try" bills. According to the Goldwater Institute, Delaware is the 27th state to introduce one this year, and five states already have a "Right to Try" law on the books.

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