Terminally ill patients trying to stay optimistic that Right to - WLBT.com - Jackson, MS

Terminally ill patients trying to stay optimistic that Right to Try legislation could offer new hope

Source: WLBT Source: WLBT
Source: WLBT Source: WLBT
Source: WLBT Source: WLBT
Source: WLBT Source: WLBT
Source: WLBT Source: WLBT

There's not a lot of hope that comes with a terminal illness diagnosis. But "Right to Try" legislation allows those patients to have access to drugs that have only cleared the first phase of clinical trials. Congress has approved a bill that's awaiting the President's approval.

Mississippi passed a Right to Try Act version of its own in 2015.

Life has taken a 180 for Hal Mardis. He noticed weakness and other symptoms last summer but wasn't diagnosed with ALS till October.

"Most ALS patients don't have what we call a long-term diagnosis," said Mardis. "ALS can work very quickly. ALS works in many different ways. It affects people all differently. Patients out there understand that I’ve had it as long as 18 years. But then most patients average 2 to 5 years."

Mardis had one of his drug infusions Thursday. He receives them ten days out of each month.

"We try most everything new," Mardis explained. "There's a new drug Radicava."

Radicava got FDA approval last year. But there are other drugs out there that are considered experimental. Right to Try legislation is supposed to open up the access to those kinds of drugs for terminally ill patients.

"I think anybody would be willing to try something to give them some extra time," noted Marids.

Mardis would want to read the fine print but ultimately he knows his timeline doesn't have the certainty to join a clinical trial.

"So, we don't have time to wait on the full ten-year program for something that could help us now," he added. "So, I'm all for it."

Brandi Nickles works alongside ALS patients like Mardis daily. She watched the hope drain quickly after the state passed the legislation in 2015.

"Everything kind of came to a halt," noted Nickles who serves as Care Services Director with the ALS Association. "Everybody was ready to try and then the drug companies. It's like you want to try it but what are we able to try."

That's the common concern among other patient organizations. They say drug companies are often the roadblock, not the FDA. Because of that, some organizations have said it makes it more like the right to ask than the right to try. Still, Nickles is hoping the federal approval will spur meaningful change.

"My hope is that they really are given the right to try," added Nickles. "They really are and it's not giving us false hope."

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