Samantha Nazario is a parent to a son with von Willebrand disease and an ambassador for the Bleeding Disorder Coalition of Florida and the Bleeding Disorder Foundation of Florida. She advocates for legislative change to improve the lives of those who need care.
Transcript
My name is Samantha Nazario, and I was a 2021 National Advocate of the Year.
I’m also an ambassador for the Bleeding Disorder Coalition of Florida and an advocate for the Bleeding Disorder Foundation of Florida. You kind of get to see your family from all over the place that you never get to see unless you’re here, so that’s always a good time. It’s actually our first event this year, so it definitely felt like coming home. So it was extra nice to host in Florida.
I’m all for some big change, like federal change. We need federal and state change. We need to pass the co-pay accumulator bill. We need to stop Big Pharma from monopolizing patient care. And I hope for a cure in the future.
We’ve had bills sent to Congress. We were able to achieve the only Republican signature on that in 2024 from Congressman Bill Posey, who has since passed away. He was enforcing the Affordable Care Act so that they don’t kind of double-dip, where they tell you, “Oh, well, this insurance covers this medication, but not this one.” That’s against the law under the ACA.
So we advocate for that, and we’ve been fighting since 2018 for the co-pay accumulator bill, which would stop insurance companies from double-dipping and saying, “Well, no, pharma gave you that. So it was a coupon. You didn’t actually spend that money.”
Being 20 years into this journey, the cost is significant to keep them healthy, and it’s more important to be proactive than reactive when it comes to bleeding disorder care. On a personal level, Titus is 26 now. He was diagnosed with VWD at age 6, or von Willebrand disease for those who don’t know. What was the scariest experience in my life turned into purpose.
I hope for the future that he continues to do what he’s done — sit here with you guys, interview, spread awareness, continue to create, and make the world a better place. That’s all we really want.
This community is small but mighty, and they don’t give up. They don’t stop fighting. It’s like nothing I’ve ever seen before. Color doesn’t matter here, political party doesn’t matter here, and money doesn’t matter here, because we’re all fighting the same struggle.
I’d like to tell caregivers, if you’re still here at the conference, make sure you meet someone different every day. The experts are in the room, and they’re not the doctors; they’re the parents and the families that have lived through these shared experiences. And, like we say in the bleeding disorder community, we don’t just survive, we thrive.