For the last few years, the March of Dimes has invited me to go to California’s Capitol Day, an annual event where staff and volunteers from March of Dimes travel to Sacramento to lobby legislators on behalf of moms and babies. It’s very similar to what Mike and I did six years ago in Washington, DC, but on the state level. I’ve never been able to go before, but this year everything worked out for me to attend last week.
The first part of the day was dedicated to learning about March of Dimes California’s legislative priorities. I found this to be incredibly fascinating because MoD was able to arrange for many bill authors to come speak with us. I loved hearing all of the thought and research the legislators had put into their bills.
Senator Richard Pan, a pediatrician and co-author of SB 277.
The three legislative priorities MoD California has this year are:
1. Protecting the Newborn Screening/Blood Spots program (AB 170)
~ This life-saving program tests a newborn for more than 30 health issues that can’t be diagnosed just by looking at the baby, like hemophilia, cystic fibrosis, etcc. March of Dimes wants to ensure that this program continues to be performed on ALL CA newborns.
2. Ensure continued quality care for children with special health care needs (AB 187 and SB 586)
~California is redesigning the California Children’s Services (CCS) Program, which provides specialty pediatric care for children with conditions such as cancer, congenital heart disease and birth defects. MoD wants to ensure that the needs of the children and their families are the top priority in the redesign process.
3. Increase immunization coverage for children (SB 277)
~This bill would would remove the personal belief exemption (PBE) that currently lets parents opt out of vaccinating their children as required to attend state licensed schools, daycares and nurseries in California. The March of Dimes has a pro-vaccine history: it was originally established by President Franklin Roosevelt to fight polio, and funded research to develop the vaccine that effectively ended the polio epidemic in the United States. The March of Dimes believes that removing the PBE would protect infants and those with compromised immune systems (including former premature babies).
(These are obviously overly-simplified explanations, so if you have any questions, let me know!)
After hearing from the bill authors, it was time to head to the capitol. It’s a giant, gorgeous building:
I was in the Los Angeles contingent, which included an MoD staffer, two preemie parents, and two members of a non-profit maternal and child health organization, one of whom was a NICU nurse. We met in the offices of four LA-area senators and assembly members: Senators Fran Pavley, Hannah-Beth Jackson, and Tony Mendoza, and Assemblyman Scott Wilk.
Everyone we met with was incredibly friendly and perceptive. We told them our stories and experiences as they related to the MoD’s priorities. The former NICU nurse spoke about the babies he’d seen saved by the newborn screen. My fellow preemie parent spoke about her 23-week micropreemie’s frightening experience after being exposed to measles. I spoke about how an illness that might not be scary or harmful to some can be deadly to others.
In all, I found it to be a great experience. Not everyone we spoke with agreed with MoD on the issues, but having discussions where we heard their perspectives was enlightening. I’m always grateful for the opportunity to talk about Madeline, and it’s my hope that her story can continue to help other babies, and help prevent parents from experiencing the painful horror of losing a child.