We will never stop advocating for people with CF and rare diseases. The future is determined by all of us — for those who will live beyond us.
Let’s make sure they have fair laws that protect them. That’s what we think about: what will happen when current caregivers pass on? Will our children and their children have laws that will protect them, provide the care they deserve and need?
We dropped into Rep. Mike Mueller’s office (unannounced) to say hello after we met with the Governor. It’s always wonderful to see you Mike. We love that he wants to bridge the gap with both sides of the political aisle, always. We appreciate his honesty and that he fights for the CF community, and rare disease. Rep. Mueller is always open about the fact that his sister has cystic fibrosis. It was great to meet her a few years ago (Madeline Elmhirst), and to talk about how well she’s doing now (after being through so much including transplants). So glad she has a brother like Mike. Mike fights for her, and for us. Thanks for being a fighter for the people. I could go on and on about his leadership, and how we see you as a wonderful human. The Bonnell Foundation works on bipartisan bills. We also work with both sides of the aisle. Rep. Mueller is a Republican and the Governor is a Democrat. Ideas matter, on both sides.
It was a great day to be with this CF and rare disease crew. We met with the Governor Gretchen Whitmer Tuesday morning to remind her about concerns over many bills: 340B, Step Therapy, Co-Pay Accumulator, Prior Authorization, Telehealth, and more. We briefly touched on our concern about the PDAB and getting the RDAC passed by legislators and signed by the Governor.
It was so important for the Governor to hear Emily Schaller of Rock CF talk about how the co-pay accumulator bill continues to impact her, and @Heathertrammell made a please “mom-to-mom” to the Governor to do something about the standoff between BC/BS and Michigan Medicine. Patients could lose coverage if they don’t reach an agreement, and the impact would be brutal for patients and caregivers. Claire Haglund and Wendi Tague touched on the need for fixes in health insurance (they’re with Children’s Hospital of Michigan). Leslie Baldwin talked about the impact on the rare community and the need to work together. Stephen Rapundalo, PhD of MichBio asked the Governor about signing off on the RDAC when it gets to her from lawmakers, and how it needs to be signed off by lawmakers. Dr. Samya Nasr also talked about how the BC/BS and Michigan Medicine contract discussions could impact her patients. Patrick Hardiman of Vertex Pharmaceuticals talked about the importance of science and research, and every parent can agree on this one. We need pharma and new drugs.
We believe we were heard. And we are thankful. This is a reminder that your voice matters. #ADVOCACYMATTERS. Do what you can, big or small. It all matters.
