Greetings to all of our Bighearted friends,

We have certainly had an eventful April and there are many updates in this letter to bring you up to speed. I hope everybody had a joyful holiday season and we're able to spend time with friends and family. 

April completed our second visit to Capitol Hill in very interesting times. I am happy to say that the offices we met with, including Senators Tim Scott (R-SC) and Patty Murray (D-WA),  Representatives Alexandria Ocasio-Cortez (D-NY), and Pete Session (R-TX), were attentive and responsive to our requests. Our focus on the topic of generic drug quality struck a cord with all offices in this completely bipartisan effort. Having meaningful conversations about the burdens of step therapy and prior authorizations really help to invigorate the staff members we met with to be prepared with strong legislation that can be widely accepted and instituted. I encourage you to take some time and watch our Hill briefing on our YouTube channel. View photos in our Gallery.

We were able to secure a champion for a federal HCM Awareness Day as well as a move for appropriations for the HEARTS Act of 2024, H.R. 6829*, which was signed into law by the President on December, 20,2024.  I can safely say that our trip to Capitol Hill was successful and meaningful. I wish to extend my gratitude to our entire internal HCMA team and our volunteers and industry partners. Bringing a true patient voice to our government officials is the most effective way we can advocate for changes that are beneficial to all those with chronic disease, cardiac, and otherwise.

Then we were on the road to Orlando with our dear friends at AdventHealth, conducting a patient education symposium. It was wonderful to see so many Bighearted friends, it feels like family. There were so many deeply emotional moments of the weekend, including reuniting Lorianne Peachey with her plasticized human heart and watching she and her husband marvel at the thing that brought them so much love, joy and pain. Holding your own heart in your hands is something only a few have experienced. My sincere gratitude to Lori for sharing her heart with us all. 

We were able to go visit Brian Wolski, who was unable to attend the session because he was awaiting a heart transplant and day passes out of the hospital are really not a thing. However, the weekend became quite eventful as just a few hours after Stacy and I visited with Brian and Cassie at AdventHealth after 369 days Brian received the call that a heart had been secured for him. As I write this letter today, he is post-op and recovering well. I also had the opportunity to hug people I have known for 20 plus years but have never previously met, and those are beautiful moments. 

Our educational content was fantastic. I am so impressed with how AdventHealth has grown into such a robust and high quality program. My thanks Dr. Marcos Hazday, MD FACC,and all the speakers at AdventHealth and Debbie Moore, BSN, MS, RN, Sarah Blair, Tracy Demetree, Kelly Reilly, Steven Kelley, Cheryl Hammerly and Lorianne Peachey with a special thank you for handling logistical challenges at the last moment. A special shout out to Steven Kelley and Janet Gruer for their volunteerism, and being the boots on the ground HCMA representatives for the meeting. This model worked out so well that, when we come to your town next, you'll have the opportunity to step up and give us a hand.

In the middle of the chaos of this month, a staff member who is also my niece lost her father. Her father was my sister Lori's first husband. As families we know divorce and separation change dynamics. There was a time that John Titus Jr., my niece and nephew's father, was a young charismatic man who stole my sister's heart and. for a period of time made her very happy. For that I will be forever grateful to John Titus Jr. My sincere condolences to my niece and nephew, John and Stacy, and their sister Heather, as they grieve the loss of this rather complicated man.

And our staff deserves two special shout outs this month – to Julie Russo our Legislative Lead, who really helped make Hill Day a success and to Stacey for navigating this month with grace and professionalism.

Together we can build better systems to improve and save lives, cost effectively and with equity for all.

*https://www.congress.gov/bill/118th-congress/house-bill/6829

 
Best wishes,

Lisa