Open Mics With Dr. Stites: Show Me The Science The Drug Giving Cystic Fibrosis Patients

The University of Kansas Health System is treating a total of 16 COVID patients today, up from14 yesterday. Other significant numbers:
6 with the active virus today, 5 yesterday
1 in ICU, 2 yesterday
0 on ventilator, 1 yesterday
10 hospitalized but out of acute infection phase, 9 yesterday
Key points from today’s guests:

Ben Hadel, cystic fibrosis patient
Was diagnosed at six months and parents told he’ll be lucky to live to age 18
Disease progressed as he got older, making life more difficult
Was “deathly ill” when he took part in clinical trial of Trikafta
Noticed a difference almost immediately after taking the drug and began gaining weight
Seen a dramatic change in life over the past two and a half years and can now think about planning for retirement
Amanda Killen, cystic fibrosis patient
Life was “rocky” with a lung function down to 20 percent
Was in the hospital every six weeks for a two week stay
Was being considered for double lung transplant
Began taking Trikafta and it’s changed her life. She’s now able to hold a full time job, work out in the gym every day and teach dance three to four hours a night and still have enough energy to clean the house and play with her dog
Joyce Funk, cystic fibrosis nurse, The University of Kansas Health System
Clinic visits for cystic fibrosis patients are now a celebration
Trikafta has drastically decreased hospitalization for cystic fibrosis patients
The doctors and staff in the clinic always dreamed of the day when things looked so positive for these patients, “But I didn’t know that any of us could have dreamed this big. So now it’s just pretty remarkable.”
Dr. Joel Mermis, pulmonologist and critical care physician, The University of Kansas Health System
Feels fortunate to be part of an era in cystic fibrosis treatment where advancements like this have been made
Cautiously optimistic that kids born with cystic fibrosis today will have a normal life expectancy
Clinical trial currently underway to see if the drug is effective in children ages two to six
Unless there is a family history of cystic fibrosis, does not recommend genetic screening
Dr. Steve Stites, chief medical officer, The University of Kansas Health System
Explained how clinical trials work, especially for so-called “orphan drugs,” like Trikafta, which benefit a relatively small number of people such as cystic fibrosis patients
Described cystic fibrosis and how it affects a person’s lung capacity
These patients have been more vulnerable during COVID
Says it’s “remarkable” that a disease that used to be a death sentence for those who have it can now be controlled to the point the patients can live full, normal lives.
Dr. Dana Hawkinson, medical director of Infection Prevention and Control, The University of Kansas Health System
Seeing a concerning trend of COVID cases ticking back up, though not to the level of the delta and omicron variants
Latest CDC data shows if you are unvaccinated and unboosted you are 20 times more likely to die than those who are vaccinated and boosted
COVID vaccines, just like Trikafta, were not rushed, but were scientifically tested and proven safe and effective before being given to the public

Thursday, May 5 at 8:00 a.m. is the next Morning Medical Update. When you think of beer, what comes to mind? A backyard barbeque or maybe a night out with friends? Some are using the popular adult beverage to re-hydrate after working out. Experts say before downing a cold one there are things you need to know.


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