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.
Thank you Heather for sharing Maddie with the world. You, Maddie and the March of Dimes is making a difference. I hoping with you that there will be less parents in this world who live without their child/children. xo
I’m so glad you got to do that, and that you lobbied for SB 277. Dr. Pan has been vilified and threatened by the anti-vaxxers, which is just so awful. He is a great person, who sincerely just wants what’s best for children, so hearing that people have been wishing him harm makes me so angrys.
I strongly oppose SB277 or any bill where the government mandates medical procedures (but especially those that can carry a risk of death), because I don’t think that’s right. I’m not anti-vaccine though, and I love that you took time to fight for something that you believe in. What a great opportunity! And I love that you were able to share Maddie with more people.
I am not anti-vaccine, either, but until they make them 100% safe (and I don’t think they can) then I believe they should never be mandated by the government. Once we start letting the government make our medical decisions, that is just opening up a door that we should not ever want opened. Our bodies, our choice, right? There are babies, children and adults who are injured by vaccines every year. Whenever there is even a small risk to any medical procedure, there should always be a choice. Plus, vaccine manufactures cannot be sued should their product malfunction and cause harm or death. They are protected by the government from any lawsuit. What other manufacturer has that government exemption? None. Only the makers of vaccines. Would you buy a car seat or a car that was exempted by our government from being sued should their product cause harm? So to force us to use a product that will never be accountable for any damage it does is wrong, in my opinion. What motivation would they ever have to improve their product? When good or bad, people are forced to buy their product? Doesn’t sound right to me.
They’re not being mandated by the government, no one will be forced to be vaccinated. Car seats and seat belts aren’t 100% safe but they are required in cars and when driving. People get injured from car seats and seat belts every year. Do you oppose seat belts and car seats? I’m being serious. It’s the same logic.
No. I think seat belts and carseats are great. But we do have a choice which kind we can buy. We can read safety tests and reviews and make our best educated decision on what’s best for our child, our family. I don’t oppose any kind of thing you can purchase because we have that freedom of choice. It’s just very interesting to me that with anything you purchase (a car, a car seat, a baby bouncer, a child’s toy, a crib) that the manufacturer of that product IS liable if it malfunctions and harms or kills anyone as a result. And if it happens to their product enough times, they make changes to make it safer…because who will continue to buy their product, if they don’t? But for some reason, the government protects vaccine manufacturers from ever being liable if one of their products harms or kills anyone. And right now yes, we do have the right to research vaccines (like we do car seats) and make our own educated decision on which ones we want for ourselves and our children. But they are trying to take that choice away, at the state level and at the federal level. There are many vaccine mandate laws in the works right now, including a federal adult vaccination mandate. The day we have no choice in what is injected into our body is a sad day for America, that’s all I’m saying.
Good for you!
This is my city! Wish I’d known you were here. And my sister is an NCIU RN here in town.
I am so glad the March of Dimes is working to get the personal belief exemption removed for California! One of my brother’s friends from elementary through high school had a younger brother diagnosed with brain cancer at a very young age (my brother was still in elementary school at the time). Thankfully, our specific schools had a good vaccination rate at the time, but his parents were still worried because the county has a religious exemption policy. (He died last year, at age twenty, a decade later than all the doctors thought he’d live with a terminal diagnosis. So, so, so sad, but also triumphant. Everyone in his life knew every day was a victory. The parish even let his family do a giant celebratory memorial instead of the traditional funeral Mass! The priest spoke in a sports arena! That’s huge in the Catholic Church.)
As a NICU survivor, I am always grateful for the March of Dimes. I try to donate every year, even though it’s usually just five or ten dollars. Thank you for going and doing work in person, on behalf of all of us who benefitted from it.