In this podcast Laura Bonnell talks with Dr. Ahmet Uluer of Boston Children’s Hospital and Brigham and Women’s CF center in Boston where he is the Adult Program Director. The Bonnell Foundation embraces Dr.Uluer ‘s love for the CF community, his time commitment to the CF community, along with his wealth of knowledge about CF that he shares with all of us so freely. We spoke at the North American Cystic Fibrosis Conference in Nashville, TN about a week after Trikafta was approved by the FDA (Oct. 21st, 2019).
Just over a week after Trikafta (Vertex Pharma) was approved by the FDA, five months ahead of schedule, five thousand people from the CF community were in Nashville, TN to attend the North American CF Conference. As the Founder/President of The Bonnell Foundation and mother of two daughters with cystic fibrosis I was thrilled to interview National Institute of Health (NIH) Director Dr. Francis Collins.
This is a podcast with Dr. Francis Collins, Director of the National Institute of Health (NIH). He discovered the gene that causes cystic fibrosis in 1989 at the the University of Michigan in cooperation with a handful of other scientists. Dr. Collins recently received the Warren Alpert Foundation prize. The second part of this podcast is with Emily,
Co-found of Emily’s Entourage. She is 33 years old and has cystic fibrosis. With the help of her friend she got 5 broadway actors/singers to make a video about CF.
Hear their story:
This is 29 year old Kristina Caudill. She has cystic fibrosis. I (Laura Bonnell) met with her Monday to talk about how many times her managed medicaid plan denied her request to get on Orkambi, an approved drug for CF by the FDA (July). Caudill and her CF doctor will try for a 5th time to get her on the medication. The state medicaid panel met Tuesday and after months of people advocating to get the drug approved, the panel made a recommendation to have it listed as an acceptable drug. The state Director, Chris Priest (approachable, media accessible and with a desire to help) says it won’t be a long wait but couldn’t say exactly when it will be in the hands of the approximately 30 people who don’t have access to the meds. These are people on average whose yearly income is below $30,000. I also talked to Governor Snyder today and he said the new drugs coming out for people with CF and other diseases is exciting. As Priest stated, and the Governor agreed, they have to listen to the recommendation of the panel (and they approved it), pay attention to costs and talk with legislators.
Listen to the audio of Laura and Kristina’s talk:
Public Service Announcements heard on CBS radio stations in Detroit 2012-13 (coming soon)
Listen to the public service announcements heard on WWJ Newsradio 950 – May is CF Awareness month.[audio:https://thebonnellfoundation.org/wp-content/uploads/2012/05/Bonnell-PSA-30-w-music.mp3|titles=CF Awareness month]
[audio:https://thebonnellfoundation.org/wp-content/uploads/2012/05/Bonnell-PSA-60-w-music.mp3|titles=CF Awareness month]
WJR’s Paul W. Smith interviews Molly and Emily Bonnell about cystic fibrosis.[audio:https://thebonnellfoundation.org/wp-content/uploads/2010/10/Bonnell-121510.mp3|titles=Paul W. Smith WJR Interviews Molly & Emily]