This resolution expresses Congressional support for designating June 10th as "FSGS Awareness Day" to highlight the severity of this rare kidney disease and support affected patients and research efforts.
Gus Bilirakis
Representative
FL-12
This resolution expresses the support of Congress for designating June 10th as "FSGS Awareness Day" to bring attention to Focal Segmental Glomerulosclerosis, a serious and often devastating kidney disease. The bill recognizes the significant impact of FSGS on patients, families, and the healthcare system, while also commending the efforts of advocates and researchers working toward better diagnosis and a cure. This designation aims to support patients and promote the urgent need for new treatments.
Congress Backs June 10th FSGS Awareness Day, Highlighting Rare Kidney Disease Crisis
This resolution is straightforward: the House of Representatives is officially throwing its support behind designating June 10th as "FSGS Awareness Day." FSGS stands for Focal Segmental Glomerulosclerosis, a rare but devastating kidney disease.
The Kidney Disease You Haven't Heard Of
If you haven't heard of FSGS, you're not alone, but its impact is massive. This disease causes scarring in the kidneys, and for many people, it quickly leads to total kidney failure, often within 5 to 10 years of diagnosis. What makes it particularly brutal is the high rate of recurrence: if someone manages to get a kidney transplant, there’s a 50% chance the FSGS will return in the new organ, sometimes within hours. If it comes back a second time, the risk of it recurring again jumps to 80% to 100%. This is a disease that doesn't just manage to knock you down; it keeps coming back for more.
The Real-World Cost of a Rare Disease
While rare kidney diseases like FSGS affect only a small percentage of people with chronic kidney disease, they cause roughly 30% of all kidney failures. The financial burden is staggering: the bill text notes that FSGS costs Medicaid, Medicare, and private insurance about $2 billion annually in direct medical bills alone. For the average person, this awareness day is about more than just a date on the calendar; it’s about shining a light on a condition that drives up healthcare costs for everyone and pushes people toward life-altering dialysis or the desperate need for an organ transplant.
Hidden Disparities and the Search for a Cure
One of the most critical points highlighted in the resolution is the issue of health equity. FSGS disproportionately affects minority groups, hitting African Americans four to five times harder than White Americans. This is largely due to specific gene variants linked to the disease that are almost exclusively found in people of African descent. Furthermore, because it’s rare, patients often wait five to seven years just to get a proper diagnosis, wasting precious time while their kidneys deteriorate. The resolution doesn't mandate any funding, but it does applaud the parents, families, researchers, and patient groups dedicated to clinical trials and finding a cure. Essentially, Congress is using this resolution to validate the seriousness of the problem and lend its voice to those working hard to solve it, signaling that this fight matters.