SPENCER, Iowa (KTIV) – Jaci Hermstad and her family continue to fight her battle against a rare form of ALS.
Thursday was one considered one of her rare “good days”, as she and her family spoke with KTIV.
The Hermstad’s are in a race against time.
A drug to combat Jaci’s specific mutation of life-threatening ALS, or Lou Gehrig’s disease, needs FDA approval.
Testing has been done on the drug, but the weeks needed to get final approval is time she does not have.
Several Iowa lawmakers are doing what they can to speed up the process, including a private bill to let the FDA bypass additional testing.
This would give Jaci access to the drug now.
A vote on the bill was supposed to be held this morning, but it has been postponed until Friday.
“It’s pure inhumane to know that this drug is done and ready to be holding it from her as she continues to show new symptoms every day. It’s just inhumane to not get her this drug as soon as possible,” said Lori Hermstad, Jaci’s mother.
Despite the hold up on the drug, community support continues to pour in for Jaci.
Until they have an answer on the bill, that support is helping Jaci and her family get through this frustrating time.
“I can’t thank everybody enough. It’s truly amazing to see and hear that so many people who don’t even know me who…y’know are pouring their hearts out in prayer and whatever they can do to help me,” said Jaci Hermstad.
If the bill passes the House on Friday, it would then move to the Senate.
The next opportunity for full passage of the bill would be after the Legislature’s week-long Memorial Day break.