Please ensure Javascript is enabled for purposes of website accessibility
top of page

When ‘right to try’ isn’t enough: Congress wants a single ALS patient to get a therapy never tested

May 31, 2019


WASHINGTON — A family in Iowa believes the Food and Drug Administration will decide whether their only surviving daughter lives or dies, and they’ve been on a monthslong crusade to break through its bureaucracy. And they’re succeeding.


Just last week, the FDA gave Jaci Hermstad, a 25-year old Iowan who is dying from a rare form of ALS, an early sign that she will receive the first dose of an experimental drug never before tested in humans. The FDA’s move, which was confirmed to STAT by Jaci’s family and doctor, is a breakthrough for the Hermstads.


For months, the family has circulated petitions, tweeted at President Trump, and called on some of Washington’s most controversial and powerful politicians — including the speaker of the House and a Republican under fire for racist comments — all to convince the FDA to waive even the most basic of studies before the drug is injected into Jaci’s already fragile immune system.

Florko, N. (2023, July 31). When “right to try” isn’t enough: Congress wants a single ALS patient to get a therapy never tested in humans. STAT. https://www.statnews.com/2019/05/31/when-right-to-try-isnt-enough/

10 views
bottom of page