Lisa Salberg • May 7, 2025
Lisa's Letter - May Newsletter

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


HCMA Blog

August's Topic is Newly Diagnosed

By Sabrina Cuddy • August 1, 2025
On a background of pink

Call to ACTION! Urge Congress to Invest in Medicaid and Medicare! No Cuts to these crucial programs!

By Julie Russo • July 31, 2025
Sixty years ago, Medicaid and Medicare were established when President Lyndon B. Johnson signed the Social Security Amendments into law. The programs were a larger part of Johnson's "War on Poverty" agenda to combat inequality. Sixty years later, Medicaid and Medicare are under attack in ways that we could never have imagined. With the passage of the One Big Beautiful Bill Act (OBBBA), $1 trillion was cut from Medicaid and Medicare―the largest health care cut in U.S. history. As a result of the budget package, more than 15 million people will lose health insurance, hundreds of rural hospitals will close, and approximately 51,000 people will die preventable deaths each year. Congress voted for this harm, and Congress can fix it. We need them to invest in Medicaid and Medicare in order to undo this damage. Click here to send a message to Congress telling them to invest in these critical programs, not cut them. OBBBA is the exact opposite of the "War on Poverty." The bill was passed with brutal cuts to health care to fund more tax handouts for the very wealthy. It took from the poor to give to the rich. The unpopularity of these cuts cannot be overstated. Eighty-three percent of the American public, including three in four Republicans, has a favorable view of Medicaid. Congress must hear from us loud and clear: reverse course, undo the harm to Medicaid and Medicare, and protect health care for more than 71 million people. Join us in sending the message to Congress to invest in these critical programs, don't cut them. 1 The Truth About the One Big Beautiful Bill Act’s Cuts to Medicaid and Medicare 2 Research Memo: Projected Mortality Impacts of the Budget Reconciliation Bill 3 Medicaid keeps getting more popular as Republicans aim to cut it by $800 billion

Lisa's Letter - July Newsletter

By Lisa Salberg • July 3, 2025
Summer, greetings to all our big-hearted friends As July approaches, our focus is already on the fall and preparing for some major events, including our annual meeting coming up in October. July will also find us on the west coast in Seattle conducting a regional patient education meeting as part of our big-hearted warrior tour. We have been following the generic drug quality issue in the United States very closely and encourage you to watch the series starting with our Hill briefing in April and following with the additional webinars with our partners at Medshadow and the People's Pharmacy, and of course the ProPublica series of articles. See them all here . We are happy to have a new team member on board - we welcome Pam as our coordinator of both our All Hearts Collaborative and Hearts and Minds project. Over the next few months, you're going to be learning more about these two amazing initiatives and how we are working to provide better services for big hearts regardless of where you live, so we are meeting all of our big-hearted friends where they are. Please stay tuned for updates from these projects coming soon. We are also creating new volunteer opportunities and engagements that we hope will make it easier for you to participate in spreading the message of the importance of diagnosis, the importance of community readiness related to CPR and AED use and, of course, helping patients get to their ultimate diagnosis and getting them on the proper treatment pathways. This July I would like to recognize all of the special birthdays in my family, including HCMA Center of Excellence coordinator, Stacey Titus-brown and my daughter Rebecca Salberg. It's a milestone birthday for Becca - it’s hard to believe I have a 30-year-old child. Wishing you all a happy and healthy summer. Go build some memories!
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