While many AGS families have successfully advocated for treatment with JAK inhibitors, there still remain significant hurdles to overcome. In a recent conversation with Dr. Laura Adang of the Children’s Hospital of Philadelphia, the AGSAA learned that the process of acquiring health insurance approval in the US for barcitinib is more fraught than we had realized. We believe that many families suffer the stress of this silently, relying on their doctors to accumulate sufficient evidence and make the appropriate appeals. We wholeheartedly recommend that families involve themselves in this process by providing their doctors with information we’ve compiled and submitting letters of appeal using a template developed by community members. Additionally, the AGSAA has been quietly developing a network of doctors and contacts in and outside of the United States, precursors to what we are calling our volunteer champions and clinical network. We’ll be your partners, if requested, advocating on your behalf. Contact support@agsaa.org, if needed, and please review our information, references, and resources for advocating for treatment.