INDIANAPOLIS, Ind. -- An Indiana mother isn't giving up the fight to get a law passed that would allow her son to take drugs that could save his life. It’s legislation Vice President Mike Pence says he'll keep fighting for.
The McLinn family went to D.C. this week to share their story in hopes of getting the "right to try" drug law passed on a federal level this year. Then-Governor Mike Pence signed the law in Indiana with the McLinn family by his side two years ago.
Seven-year-old Jordan McLinn was diagnosed with muscular dystrophy, a fatal disease with no cure.
"These are years terminally ill patients just don't have and so so many of them just see this hope dangling right in from of them and they know hey there's a drug that could extend my life or save my life but I'm not allowed to access it," Jordan's mother, Laura McLinn said.
The state law could help these families but they would like to see a federal law to avoid any hiccups with the FDA.
"Yes, it's a state law but you're dealing with a federal agency. We don't want to take any chances that the FDA is going to step in and say nah, we're not going to let you do that," Laura said.
After their meetings on Capitol Hill, they had a meeting with Senator Joe Donnelly, followed by a Facebook shout out. And to top it all off, a phone call inviting them to a meeting with their old friend, Vice President Mike Pence.
"He told us I've had multiple conversations with the president and he's passionate about this, I'm passionate about this, we're going to get this done," Laura said.
This legislation does have bipartisan support so they’re hopeful it will pass this year. And good news for Jordan, he’s screening for a clinical trial next week in Chicago.