There is no cure for AGS.
There is no time machine to go back and repair the havoc it causes once triggered. But, there IS a treatment option available right now that buys us valuable time by halting the aggressive inflammatory response that causes brain, nervous system, and organ damage.
The AGSAA, AGS experts, and AGS families overwhelmingly recommend the use of a class of drugs called “JAK inhibitors” to ameliorate the consequences of AGS disease activity. A global task force of specialists with the ACR, EULAR, NIH, CHOP, GLIA and more officially determined these drugs to be beneficial.
The most widely used and studied JAK inhibitor for AGS, baricitinib (brand name Olumiant, created by big pharma co Lilly ) was repurposed to treat AGS and other related conditions. This is called “off-label” use, a highly common practice in healthcare but can cause frustrating issues with insurance, pharmacies, and doctors when the U.S. Food and Drug Administration (FDA) hasn’t given their stamp of approval. AGS was put forth for this designation in February 2020, but was not approved for reasons unknown, and has been in limbo since. While we are not permitted to advocate for a specific drug directly with the FDA, we are working on other ways to get Aicardi-Goutieres Syndrome on their radar so they fully understand our patient experience, burden of care, and why we need equitable, timely, and affordable access to the ONLY treatment option available.
If we had Alopecia, COVID-19, or Rheumatoid Arthritis we would be able to get this prescription easily, often with Lilly subsidizing it through their Lilly Cares cost assistance program which all AGS patients are excluded from. Beyond that, AGS family access is further determined by location, competence and commitment of their prescribing doctor, insurance type, income, and other factors that should never matter when it comes to keeping your child alive and well.
Help us tell this important story to Lilly to remind them of our desire to collaborate and to the media so families get the access and support they need.
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