The CFRI CF Community Voices Podcast

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 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 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.

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.

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.

People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the age of 34, provides an update on her journey and a reminder to get a life-saving colonoscopy.

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 Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, Genentech, and Viatris.

People with cystic fibrosis have 5 to 10 times the rates of colon cancer as the general public. Those post transplant have over 25 times the risk. No one has worked harder to raise awareness of the higher risk of colon cancer among those with cystic fibrosis than Anna Payne. Anna, who lives with CF and was diagnosed with Stage 4 colon cancer at the age of 34, provides an update on her journey and a reminder to get a life-saving colonoscopy.

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 Vertex Pharmaceuticals, Gilead Sciences, Chiesi USA, Genentech, and Viatris.

Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin cancer surveillance and treatment in high-risk populations, such as cystic fibrosis and solid organ transplant recipients.

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, and Viatris.

Skin cancer is a risk for everyone, but in particular for those with cystic fibrosis post-transplant. Learn valuable tips to protect yourself from Dr. Jennifer Wang, MD, Clinical Assistant Professor of Dermatology at Stanford, who specializes in melanoma, non-melanoma skin cancers, and cutaneous lymphomas. Dr. Wang takes special interest in skin cancer surveillance and treatment in high-risk populations, such as cystic fibrosis and solid organ transplant recipients.

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, and Viatris.

Rod Spadinger and Joshua Bauder share the inspirational work of CF Vests Worldwide, which ships vests to individuals with CF in developing countries, who have no access to vests and medical equipment. Josh, who lives in Thailand, shares his experiences caring for his young daughter with CF. Meet the people whose lives are changed thanks to this organization's mission-driven work.  

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

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