Patient Stories
CF Patient Amanda Boone- KRDO: Colorado lawmakers deciding between access and affordability for ‘Orphan Drugs’
COLORADO SPRINGS, Colo. (KRDO) – The bipartisan Senate Bill 24-060 is making its way through the Colorado Legislature right now. It’s the tip of the iceberg of an ongoing debate between patient access and affordability to rare, often life-saving prescription drugs referred to as “Orphan Drugs.”
If passed, the bill will not allow the Prescription Drug Affordability Board (PDAB) to review and evaluate “Orphan Drugs” for affordability. Set up in 2021, the PDAB was supposed to save Coloradans money by evaluating the price of prescription drugs and setting an upper payment limit for them.
In 2021, Cystic Fibrosis patient and Colorado Springs resident Amanda Boone was watching the PDAB legislative process closely. That’s because a life-saving drug she was taking, Trikafta, was set to be reviewed for patient affordability first. Boone explained that she currently pays nothing for the drug that’s essentially reversed the debilitating symptoms of her rare and chronic condition.
“They were concerned Trikafta would leave the state, the makers of my drug would take it out of the state and they would not be able to dispense it,” Boone said. Read More
Multiple CF Patients/Caregivers, Orphan Drug Bill Hearing- Colorado Politics :
When a Colorado agency last year considered placing a price cap on a drug commonly used for cystic fibrosis treatment, Jen Reinhardt feared her daughter would ultimately lose access to the medication and considered moving her family to another state.
Reinhardt’s daughter Maya has cystic fibrosis and uses the drug Trikafta, which the FDA described as a breakthrough therapy to treat patients who have the most common cystic fibrosis mutation. Read More
CF Mom Jen Reinhardt, Denver 7- Protect Rare Disease Patients:
Jen’s Opinion piece in Colorado Newsline:
Rare Disease Mom Heather Kluck and her daughter Avery, The Colorado Sun:
Rare Disease Patient and Org Founder, Bridget Dandaraw-Seritt-Colorado Politics:
CF Patient Amanda Boone, Denver 7 Real Chat, Episode 47, Prescription Drug Costs:
*She goes on at the 8 minute mark.
It was also aired on Colorado Public Radio (CPR):
CF Patient Hannah Pfeiffer, CBS News- PDAB Follow Up after October 2023 Board Meeting:
“The board met Friday to discuss the drug Trikafta and all indications are the board will not set an upper limit on the price of the drug, which was approved three years ago for CF and is considered a miracle drug.”
Hannah, CBS News- PDAB Trikafta Review:
https://www.cbsnews.com/colorado/news/patients-doctors-worry-trikafta-no-longer-available-colorado
Hannah, Partnership to fight Chronic Disease:
CF Mom Stacy Emore and daughter Marlee, CBS News- PDAB “No showed” at Patient Engagement Meeting:
CF Patient Sabrina Walker, CBS News-PDAB Trikafta Review :
https://www.cbsnews.com/news/drug-prices-trikafta-cystic-fibrosis-colorado
Sabrina in Newsline:
CF Mom and Patient Org Founder Laura Bonnell, The Detroit News-PDAB:
https://thebonnellfoundation.org/wp-content/uploads/2023/12/Bonnell_-PrescriptionDrugArticle.pdf
CF Patient Gunnar Esaison, Rapport- Battling the Consequences of Price Controls:
Gunnar, Stat News:
Rare Disease Mom Amber Freed and son Maxwell, Colorado Politics- PDAB:
Rare Disease Patient Advocate Jacinta Behne – Colorado Politics- Senate Bill 60
CF Patients Amanda Boone and Gunnar Esaison, and HIV patient Jen Laws, Pluribus News:
HIV Patient and Advocate Jen Laws, Chicago Sun Times- PDAB:
Arthritis Patient and Advocate, Tiffany Westrich-Robertson, Colorado Politics: