RECOGNIZING THE MONTH OF APRIL AS SARCOIDOSIS AWARENESS MONTH

On 2025-04-09, Representative Danny K. Davis (D-IL-7) delivered a floor speech titled "RECOGNIZING THE MONTH OF APRIL AS SARCOIDOSIS AWARENESS MONTH" in the House.

RECOGNIZING THE MONTH OF APRIL AS SARCOIDOSIS AWARENESS MONTH

Congressional Record, Volume 171 Issue 64 (Wednesday, April 9, 2025) [Congressional Record Volume 171, Number 64 (Wednesday, April 9, 2025)] [Extensions of Remarks] [Pages E305-E306] From the Congressional Record Online through the Government Publishing Office [ www.gpo.gov ] RECOGNIZING THE MONTH OF APRIL AS SARCOIDOSIS AWARENESS MONTH ______ HON. DANNY K. DAVIS of illinois in the house of representatives Wednesday, April 9, 2025 Mr. DAVIS of Illinois. Mr. Speaker, I rise today to recognize the month of April as Sarcoidosis Awareness Month. Sarcoidosis is a rare inflammatory disease characterized by the formation of granulomas--tiny clumps of inflammatory cells--in one or more organs of the body. When the immune system goes into overdrive and too many of these clumps form, they can interfere with an organ's structure and function. When left unchecked, chronic inflammation can lead to fibrosis, which is the permanent scarring of organ tissue. This disorder affects the lungs in approximately 90 percent of cases, but it can affect almost any organ in the body. Despite increasing advances in research, sarcoidosis remains difficult to diagnose with limited treatment options and no known cure. Sarcoidosis is considered chronic in people whose disease remains active for more than 2 to 5 years; in this population sarcoidosis can be debilitating and life-threatening. It's estimated that the prevalence of sarcoidosis in the U.S. ranges between 150,000 and 200,000 with an estimated 1.2 million individuals with sarcoidosis worldwide. I am proud to have the Foundation for Sarcoidosis Research (FSR) based in my district, in the city of Chicago. I've had the chance to meet wonderful patient advocates and hear their stories. FSR is committed to advancing pivotal research and improving the lives of all impacted by sarcoidosis and has funded over 7 million dollars to support academic research to better understand the cause, mechanisms of progression, and the effective and efficient path to better patient outcomes. Most recently, I worked with FSR to address a lack of clarity from the Department of Labor regarding whether or not clinical trial participation was a permissible use of leave under the Family and Medical Leave Act (FMLA). Like other chronic and rare disease patient populations, clinical trial access is critically important for patients with sarcoidosis, as there is no cure and there is a lack of treatment options. When requesting time off to participate in clinical trials, some patients have been denied as HR departments have not interpreted clinical trial participation as a permissible use of leave under FMLA. I, along with other Congress members and leading stakeholder organizations such as FSR, reached out to the DOL to get this clarification. Fortunately, the DOL responded confirming that they interpret clinical trial participation, when medically necessary, is a permissible use of leave under FMLA. It further clarified that both patients and caregivers are guaranteed job protection under FMLA, when meeting the necessary requirements and choosing to participate in clinical trials. This effort extends beyond sarcoidosis and extends to all those seeking to participate in clinical trials. I am now working to spread awareness of this finding, so employers, employees, HR departments and patients are aware of proper use of leave under FMLA. [[Page E306]] This year marks the 25th Anniversary of the establishment of the Foundation for Sarcoidosis Research. In celebration of this accomplishment and years of innovation, empowerment and progress, I call on my colleagues to recognize the goals and ideals of Sarcoidosis Awareness Month by supporting federal activities that improve the lives of patients impacted by Sarcoidosis, and to raise awareness and shine a light on the 1.2 million people living with Sarcoidosis. ____________________