The CFRI CF Community Voices Podcast

Running with Cystic Fibrosis - Katie O’Grady

In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.

Running with Cystic Fibrosis - Katie O’Grady (Audio)

In this inspiring podcast, Katie O'Grady, from Boston, Massachusetts and living with cystic fibrosis, describes her lifelong love of running, and the impact this has had on her health. In 2019, Katie joined a group of runners with CF, recruited by Dr. Ahmet Uluer, that ran the Boston Marathon. Recognizing that running is not for everyone, Katie shares her tips for starting and staying with an exercise program, and how to discuss this topic with your CF care team.

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences, and Viatris.

CF in Pakistan – A Doctor’s Crusade for Change (2 of 3)

Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Gain a better understanding of the obstacles overcome, and the needs still to be met to create change in Dr. Akbar's native country. As Dr. Akbar shares, “The disparities in the care between the West and the East, we can equalize that. All patients deserve to have a good standard of care wherever they are.” This is Part 2 of a 3-part series. 

Click here to connect with the Pakistan Cystic Fibrosis Support Network that Dr. Akbar mentions in this podcast:

https://www.youtube.com/channel/UC7Fo0uekygrPEGzmPipdOhQ

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

CF in Pakistan – A Doctor’s Crusade for Change (2 of 3) (Audio)

Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Ali Akbar shares insights from his decades of dedication and work to improve the lives of those with cystic fibrosis in Pakistan. Meet the medical teams and families in Pakistan that Dr. Akbar supports through CF clinics and education to improve medical care. Gain a better understanding of the obstacles overcome, and the needs still to be met to create change in Dr. Akbar's native country. As Dr. Akbar shares, “The disparities in the care between the West and the East, we can equalize that. All patients deserve to have a good standard of care wherever they are.” This is Part 2 of a 3-part series. 

Click here to connect with the Pakistan Cystic Fibrosis Support Network that Dr. Akbar mentions in this podcast:

https://www.youtube.com/channel/UC7Fo0uekygrPEGzmPipdOhQ

If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7

CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

Cystic Fibrosis in China: A Struggle for Diagnosis and Care

In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap among the thousands of undiagnosed families living with CF in China.

 

Dr. Tian received her medical degree at Peking Union Medical College in China. She worked as a Research Fellow at the Cincinnati Children’s Hospital Medical Centre, OH and UC San Francisco, CA, and as a Visiting Clinician at the Mayo Clinic, MN.

 

Chinese Experts Consensus Statement: Diagnosis and Treatment of Cystic Fibrosis (2023) - Includes the 32 questions referenced in this podcast: https://url.avanan.click/v2/___https://pubmed.ncbi.nlm.nih.gov/36990700/___.YXAzOmNmcmk6YTpvOjg4OTc2NjVhMWY1NjhmYmE2OTEwYjNkNWYxMWI4Nzk1OjY6ODE5NTpjZTc3OTY2ODMwN2VlNzJlNDg0MjIzYzBiOGViYWZhOWJiNWY4NDgwYjFhMGM1OTQ5YTNkNWJiZjBlYzQ0ZTVhOnQ6VA

Cystic Fibrosis in China: A Struggle for Diagnosis and Care (Audio)

In this podcast, Dr. Xinlun Tian, MD, Professor, Dept. of Pulmonary and Critical Care Medicine, Peking Union Medical College Hospital, shares the history and phenotypes of cystic fibrosis (CF), current conditions regarding the high amount of projected undiagnosed cases of CF in China, and shares the immediate needs to facilitate closing the gap among the thousands of undiagnosed families living with CF in China.

 

Dr. Tian received her medical degree at Peking Union Medical College in China. She worked as a Research Fellow at the Cincinnati Children’s Hospital Medical Centre, OH and UC San Francisco, CA, and as a Visiting Clinician at the Mayo Clinic, MN.

 

Chinese Experts Consensus Statement: Diagnosis and Treatment of Cystic Fibrosis (2023) - Includes the 32 questions referenced in this podcast: https://url.avanan.click/v2/___https://pubmed.ncbi.nlm.nih.gov/36990700/___.YXAzOmNmcmk6YTpvOjg4OTc2NjVhMWY1NjhmYmE2OTEwYjNkNWYxMWI4Nzk1OjY6ODE5NTpjZTc3OTY2ODMwN2VlNzJlNDg0MjIzYzBiOGViYWZhOWJiNWY4NDgwYjFhMGM1OTQ5YTNkNWJiZjBlYzQ0ZTVhOnQ6VA

Copay Accumulator Programs: Why Must They Be Banned?

Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmountable costs to access needed medications, leading to greater health disparities and poor health outcomes. Learn more about copay accumulator programs from two patient advocates, Siri Vaeth and Brian Callanan.

NOTE: Since the filming of this podcast, California legislation, AB 874, referenced in the recording, has been stalled and will now be a two-year bill.

Edited by Brandon Delgado.

CF Community Voices is made possible with grants from Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech.

Copay Accumulator Programs: Why Must They Be Banned? (Audio)

Copay accumulator programs are increasingly embedded within insurance plans, creating significant financial hardship for patients. Copay accumulator programs allow payers to accept patients' financial assistance to access medications, but then do not apply these funds to the patients' deductible and out of pocket expenses. Many people face insurmountable costs to access needed medications, leading to greater health disparities and poor health outcomes. Learn more about copay accumulator programs from two patient advocates, Siri Vaeth and Brian Callanan.

NOTE: Since the filming of this podcast, California legislation, AB 874, referenced in the recording, has been stalled and will now be a two-year bill.

Edited by Brandon Delgado.

CF Community Voices is made possible with grants from Vertex Pharmaceuticals, Viatris, Gilead Sciences, Chiesi USA, and Genentech.

Cystic Fibrosis in Pakistan: A Doctor’s Crusade for Change (Video)

Part 1 of 3 - Meet Dr. Ali Akbar, Consultant Respiratory Pediatrician, Birmingham, UK and hear his story of overcoming obstacles to provide needed care for families living with cystic fibrosis in Pakistan. Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Akbar has dedicated his career to improving the lives and outcomes for those living with CF in Pakistan where the disease is little understood, underdiagnosed, and where access to care is scarce. If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7 CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.

Cystic Fibrosis in Pakistan: A Doctor’s Crusade for Change (Audio)

Part 1 of 3 - Meet Dr. Ali Akbar, Consultant Respiratory Pediatrician, Birmingham, UK and hear his story of overcoming obstacles to provide needed care for families living with cystic fibrosis in Pakistan. Born in Pakistan and currently practicing Pediatric Respiratory Medicine in the UK, Dr. Akbar has dedicated his career to improving the lives and outcomes for those living with CF in Pakistan where the disease is little understood, underdiagnosed, and where access to care is scarce. If you watched this episode, please tell us what you think at https://www.surveymonkey.com/r/FQC73S7 CF Community Voices is made possible through grants from Chiesi USA, Genentech, Vertex Pharmaceuticals, Gilead Sciences and Viatris.