The Foundation for Sarcoidosis Research is part of a 27-member coalition dedicated to improving access to supplemental oxygen for all in need.
Chasta Posey, FSR Patient Advocate, Patient Navigator, Member of the FSR Women of Color Advisory Committee, and FSR Global Sarcoidosis Alliance Volunteer Leader, joined Tricha Shivas, FSR’s Chief Strategy Officer, and advocates from around the US as part of the Virtual Oxygen Hill Day on January 31, 2024, aimed at improving the lives of those impacted by lung disease by:
- Ensuring supplemental oxygen is patient-centric by moving away from “home” oxygen to “supplemental oxygen” and creating a patients’ bill of rights.
- Ensuring access to liquid oxygen for patients for whom it is medically necessary.
- Creating a statutory service element to provide adequate reimbursement for respiratory therapists to ensure patients have access to their expertise
This is Chasta’s Story.
“Who knew, being between the ages of 19-20, that walking up a flight of stairs would be so difficult. Sarcoidosis took a turn when it began to affect my lungs. I thought we were in a good place and had a handle on this debilitating illness, when one day I woke up trying to catch my breath. I thought that it was a side effect from being exhausted with school and work. But to my surprise, Sarcoidosis decided to take a journey to my lungs.
I decided to call my doctor, explaining what I had experienced and he immediately referred me to a pulmonologist. This particular doctor ordered chest X-rays before I was seen in the office. Once the results were in and I saw the doctor, he immediately began to question me about drug abuse. He insinuated that I was an avid smoker and that was the cause of my shortness of breath. He stated that it was common for my community of people. I immediately went into defense mode. I spoke with my (diagnosing) doctor and he told me to never go back to him. The pulmonologist never read the doctor’s notes or even bothered to read through my chart. I felt extremely insulted and disrespected, to be profiled in such a negative way.
A new appointment was made with a different pulmonologist and the doctor was well-versed in Sarcoidosis. The chest X-ray confirmed that I was indeed experiencing Pulmonary Sarcoidosis. Being a student athlete, you understand why the usage of your lungs are important. But when that ability is taken away, you begin to put in perspective how important your lungs really are. If my oxygen usage wasn’t a part of my everyday life, I wouldn’t be able to do half of the things that I do on a daily basis.
There were several challenges I faced to get approved for oxygen. Being excessively questioned about being a drug abuser halted the approval of my oxygen. Since I was young and active doctors question if I really had Sarcoidosis and asked more questions about being misdiagnosed. Being honest in this situation didn’t really get me anywhere. My next step was to get my legislators involved and to speak on my behalf. It’s important to know your city and state representatives and to tell them what’s happening so they can help you advocate and bring awareness to this illness.”
To learn more about FSR’s advocacy efforts, click here. To get involved send an email to info@stopsarcoidosis.org.