We started as a zero profit organization of cystic fibrosis patients, caregivers, family members, and friends working hard to ensure continued, affordable access to CF medicines. We gathered together after the news of Trikafta being targeted by our state government with a goal of reducing the manufacture’s price. We agree with lower prices AND need assurances that our current life-saving medicine and future access to treatments will not be in jeopardy. After winning our battle, we now would like to help other patients, groups, and organizations in their fight! Don’t let your state cause catastrophic loss due to negligence in how they fight pharma!
We won our fight, let us help you win yours!
In 2023 Colorado short-listed CF gene modulator, Trikafta, as one of it’s high-priced medicines that they wanted to reduce prices on. We agreed with lowering the cost of medicine in our state but made it clear that the lives of cystic fibrosis patients must remain PROTECTED while these changes were proposed. Our lives would not be reduced to a dollar figure during the fight.
We have concerns of how all future rare medicines could be impacted by these policy changes. We have many breakthroughs to look forward to for EVERYONE in the cystic fibrosis and rare disease communities. These changes impact Colorado at the moment, but will have a ripple effect on the entire country. We want to ensure that the ripple effect is a positive one. With patients remaining safe.
We want lower costs for critical medicine but we will NOT be a casualty of a brutal budget war against this rare population.
Please join our fight and help us protect our access to current and future CF meds as well as other rare patient disease medications.