Posts Tagged: rare

Rare-disease patients seek lawmakers’ support

A medical technician prepares to draw blood from a patient. (Photo: Ruchuda Boonplien, via Shutterstock)

by KAREN MOREY posted 05.19.2021

OPINION: The worry of a mother for her child never ends. I am the sole caretaker of my adult daughter who suffers from multiple rare diseases. Her conditions hold her from living independently. During her 35 years of life and her 12 years of living with her chronic conditions, I cannot remember the many times that she almost died.

California Healthline: The state Senate Committee on Health this week approved a bill to delay the move to managed care for California Children’s Services, a program for Medi-Cal children with rare and complicated diseases. AB 187, by Assembly member Rob Bonta (D-Oakland), would put off the state’s planned shift of children in the CCS program for a year, till January 2017.