Key points from today’s guests:
Dr. Steven Stites, chief medical officer, The University of Kansas Health System
- Cystic fibrosis is a rare and life threatening disease that has seen remarkable changes in just the past few years.
- It's a genetic disease in which there's a defect in a protein channel that lines cell membranes, especially places like your skin, more importantly in your sinuses and in your lungs. That makes it much harder to breathe because it makes your secretions much thicker.
- When I started in 1993, the average life expectancy was about 17 years old. Things have changed rapidly.
- About four years ago, I had the best week of clinic visits in my entire life because I was seeing cystic fibrosis patients benefiting from a new therapy that changed their lives.
- Thanks to both Ben and Sarah for being such great participants in research because that allows science to bring us joy.
Sarah Johnson, living with cystic fibrosis
- A special education teacher, she feared that she would have to quit her job due to cystic fibrosis.
- In 2018, The University of Kansas Health System called her about a clinical trial for a new drug – Trikafta – which worked and offers her a longer, more normal life.
- It provided an almost immediate improvement in her quality of life, and has even participated in a 5K race.
- She said she is so grateful to be part of the research to help others and praises the staff for getting her the treatment that changed her life.
Ben Hadel, living with cystic fibrosis
- Ben said it was tough growing up with cystic fibrosis and the last several years had been particularly difficult to manage as a common respiratory illness meant hospitalization and long recoveries.
- Ben even felt so disillusioned about his health that he felt he didn’t need to save for retirement because he didn’t think he’d make it to retirement age.
- He also took part of the clinical trial for Trikafta at The University of Kansas Health System and things are now dramatically different.
- He and his wife were able to travel to Italy over the summer and he thought that was something he would never be able to do without this treatment.
Dr. Joel Mermis, pulmonologist, The University of Kansas Health System
- With cystic fibrosis, it can lead to chronic lung infection because of an electrolyte disturbance in the lungs.
- The amazing thing about Trikafta is it is actually able to kick that necessary protein into gear and correct the issue.
- The clinical trial was amazing -- within days you could see the difference in people. In one patient, her lung function was up 15-20 percent within two weeks.
- Every year we'll see a few patients who made it into adulthood without being diagnosed with CF. All 50 states do screen for CF at birth and most cases are diagnosed in childhood.
- These are examples of the power of personalized medicine. CF across the scientific and medical community has really been one of the best examples in history of the power of science -- in seeing a disease take a miraculous transformation within a very short period of time, and it's just been amazing to be part of it.
- It really speaks to the importance of participating in clinical trials, because obviously without people with CF participating in this trial, these new drugs would never be a thing. It would never be available to all those other patients who couldn't or didn't participate in the trial.
Joyce Funk, RN, nurse, cystic fibrosis clinic, The University of Kansas Health System
- We deal with specialty pharmacies to try and receive the drug for patients.
- With any medication that costs this much, there's still a lot left over sometimes on the patient side to cover, so we have an amazing group of people who work to make it accessible for patients by finding assistance programs and copay assistance.
- A lot of times with third party payers what you have to prove is the effectiveness of the medication and that has been a slam dunk with Trikafta.
- Science is amazing. I have the best job in the world. I get to work with Sarah and Ben. Every day and I get to watch some remarkable folks live some amazing lives.
Dr. Dana Hawkinson, medical director, infection prevention & control, The University of Kansas Health System
- COVID hospitalizations this week have decreased from 20 patients last week to 15 patients this week.
- Dr. Hawkinson received his influenza and COVID vaccines live on-air, while Dr. Stites received his COVID vaccine. It is OK to receive both vaccines at the same time.
- There is research going on for a combined COVID and influenza vaccine in the future.
- Discomfort in the arm is normal after a vaccination, especially after the COVID vaccine.
- We continue to have active surveillance for side effects and adverse events with these vaccines.
Friday, Oct. 27 at 8 a.m. CT is the next Morning Medical Update. Learn more about support groups, online communities, and organizations that provide emotional, financial, or practical assistance to breast cancer patients and their families.
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