Idaho PANS PANDAS Updates
NWPPN is leading the efforts in Idaho. We will help provide updates and Call to Action items as needed. If you would like to join in the efforts, please contact...
Getting involved in advocacy is easier than you may think, but it is a critical advocacy effort. We need your help!
Start here: How to Assist with PANS/PANDAS Legislation for lots of fantastic information on getting started, including how to talk to your Legislators and ask for their support. See below for State Pages and additional PANS PANDAS Legislative Resources from ASPIRE. Email the Public Policy Committee today for more information on advocacy efforts in your state!
PANS and PANDAS are severe yet treatable neuroimmune disorders. Despite effective treatments like IVIG and antibiotics, many sufferers are denied care due to the lack of insurance coverage. Families often face an unsurmountable financial strain, leaving some patients without access to appropriate treatment, which can lead to a lifetime of suffering or devastating loss of life. Furthermore, schools absorb a significant financial burden of providing special educational and designated instructional services. Those fortunate enough to receive treatment experience life-changing improvements, as evidenced by survivors who went on to lead successful lives after overcoming PANS. However, the inequity in accessing care persists, leaving most without proper support or understanding. Urgent support is needed to ensure all affected individuals have access to essential medical interventions, enabling them to reclaim their lives and fulfill their potential.
We know that you, the State Leads, are hooked in with most everyone from your state but often new families find ASPIRE before finding state groups. But, ASPIRE is here to assist you. We can create State Pages (see below). We will help you share updates and Call to Action.
For all states working towards passing a bill, ASPIRE has two testimony letters that we can update for your state. One is from the Board of Directors and the other is from the Professional Advisory Board.
What we need from you:
If your state has both a House Bill and a Senate Bill running at the same time, please let us know how you would like ASPIRE to address the letters with that in mind. Some states want totally separate letters while other states allow you to include both bill numbers and address both House and Senate members in the same letter.
We are in the process of updating the legislative packets. If you would like to use the current version please email us.
We know that you, the State Leads, are hooked in with most everyone from your state but often new families find ASPIRE before finding state groups. So, ASPIRE is here to assist you. We can create State Pages (see below). We will help you share updates and Call to Action announcements.
NWPPN is leading the efforts in Idaho. We will help provide updates and Call to Action items as needed. If you would like to join in the efforts, please contact...
Download Toolkit Legislative Action: Information for Legislators Toolkit Download ASPIRE’s PANS/PANDAS Legislative Action: Information for Legislators Toolkit. This Legislative Toolkit...
Residents of Tennesee, we need your help! This is the first year Tennessee has undertaken legislative efforts to pass a legislative mandate to secure insurance coverage for PANS PANDAS. SB2401/HB2484...
Virginia PANS PANDAS Updates Virginia Alliance for PANS/PANDAS Action (VA4PA) is leading legislative efforts. Please contact them directly for more information. Their website is VA4PA and...
WV needs your help asking legislators to support HB 2252: Requiring insurance coverage for treatment of pediatric autoimmune neuropsychiatric...
California Legislative Action Please follow this page and ASPIRE’s social media for updates – Facebook and Instagram. Please contact CALPANS with questions regarding California legislative...
Massachusetts PANS PANDAS Updates For all updates and more information: Please follow the Massachusetts PANS/PANDAS Legislation Facebook page. How to talk to your state representative...
Please support NWPPN’s lead to mandate insurance coverage for PANS...
Missouri PANS PANDAS Updates Currently, there is a proposed PANS PANDAS bill in the House – Proposed HB 1365 Requires health insurance coverage of certain pediatric disorders that would...
The deadline to make the first funnel is March 4th. Calls/emails really need to be made by Monday, March 1st as this committee generally only meets on...
Are you in New York State? Help secure legislation mandating insurance coverage for PANS PANDAS in New York. No experience...
Georgia PANS PANDAS Action Updates The current bill HB140 has strong sponsors from the House Health Committee, but we must have support from key Republican leaders to make it...