Sarcoidosis: Disparities in Healthcare & the Importance of Diversity in Clinical Trials

See the Invisible: Living with an Invisible or Rare Disease

Photo Credit - pulmonaryhypertensionnews.com

In this episode, I will be interviewing Dr. Divya Patel. She works closely with Sarcoidosis patients and the work that she and so many other doctors do is important for recognition of this terrible disease. I have seen this disease first-hand. Ten years ago, my sister died from complications from one of the forms of sarcoidosis.

It is extremely important that clinical trials are performed in order to advance the treatment of not only sarcoidosis, but all rare diseases. Just as important is to make sure that all people are represented. Black people are significantly underrepresented in clinical trials, not only in the U.S. but in many other countries. We will be discussing what these trials are and why it is so important to have all people represented.

"Dr. Patel is a Clinical Associate Professor of Pulmonology and Director of the Sarcoidosis and ILD Programs at the University of Florida.  The focus of her career is to improve the care of patients who are critically ill and have chronic pulmonary conditions such as sarcoidosis and interstitial disease. She has a special interest in understanding how sarcoidosis affects patients from underrepresented backgrounds and the obstacles they face in accessing care. Having completed specialized training, she participates in clinical research with the aim to improve the quality of life of patients."

Important Resources:

http://www.stopsarcoidosis.org/ACTNow (Survey)

http://www.stopsarcoidosis.org.

https://www.lung.org/lung-health-diseases/lung-disease-lookup/sarcoidosis

https://www.nhlbi.nih.gov/health/sarcoidosis

www.rarediseases.org