OREGON-2023
SB 628-PASSED & SIGNED INTO LAW EFFECTIVE 1/1/24
Senator Kate Lieber PASSED Senate Bill 628 which will ensure healthcare coverage alignment from both private and commercial insurers to meet or exceed the coverage set by the State of Oregon for IVIG treatment for children with PANDAS/PANS. The Oregon Health Evidence Review Commission (HERC) passed IVIG coverage for those on Oregon’s Medicaid plan in May of 2022 after a robust year long + review of the evidence, consultation with national experts, testimony from providers, families and allies. SB 628 would ensure health equity for ALL Oregon children.
10 other states have already passed this legislation including New Hampshire, Illinois, Minnesota, Delaware, Arkansas, Indiana, Maryland, Massachusetts, Kansas and Rhode Island.
A simple legislative one pager can be found here and a more detailed summary here.
How to help:
WASHINGTON-2022
House Resolution 4563 was adopted on February 24th, 2022. This bill was introduced by Representative My-Linh Thai and co-sponsored by Representatives Pollet, Wicks, Orwell, Morgan, Fey, Walen and Callan. This bill serves to call attention to the need for greater awareness while specifying the national standards of care including antibiotics, steroids and IVIG. The Washington House of Representatives recognizes and honors the patients and families affected by PANDAS/PANS and the practitioners who assist them. The full text of the bill can be found here.
IDAHO-2022
HCR 30
Idaho successfully passed HCR 30, a PANDAS/PANS Awareness Day with Chief Sponsor, Representative Chris Mathias in March of 2022. The details of the bill language can be found here which specifically call upon the Idaho Department of Health, the Idaho Education Association and the Idaho State Department of Education to each do their part in raising awareness about these disorders.
A simple legislative one pager can be found here and a more detailed summary here.
How to help:
Submit written testimony in support of SB 628 and ask your family members, friends, co-workers, church members to do the same.
Attend public hearings to show your support OR tune in virtually.
Call Senator Hayden (503-986-1706) and Senator Bonham (503-986-1726) and ask for their support on SB 628 (scripts to use are below and you can call after hours if you are nervous to call during the day).
Phone and written testimony scripts to use can be found here.
Follow the bill progress here: https://olis.oregonlegislature.gov/liz/2023R1/Measures/Overview/SB628
Submit written testimony here: https://olis.oregonlegislature.gov/liz/2023R1/Testimony/SHC/SB/628?area=Measures
FRIDAYS WITH FAMILIES
A LEGISLATIVE CAMPAIGN FEATURING NORTHWEST FAMILIES AFFECTED BY PANDAS/PANS
To join this campaign and share your story, please fill out the application form.
