Terri joined the Hemophilia Council of California (HCC) in 1993 as our first Legislative Advocate. Almost immediately after starting with HCC, in 1994 Terri helped us achieve the first California Children’s Services (CCS) protection bill signed into law as a co-sponsor of SB 1371 (Bergeson & Lee). That bill kept the CCS Program outside of Medi-Cal Managed Care plans, and still today, with the exception of the Whole Child Model Pilot Counties, most CCS patients are not in managed care.
In 1995 Terri was instrumental in helping HCC launch our first ever Legislative Day, a yearly advocacy day we have held ever since. In some of our most highly-attended years, the number of advocates has swelled to more than 120 community members, a huge accomplishment with this rare disease community.
Terri later worked with HCC’s hugely influential Executive Director Val Bias in the 2000s to establish our flagship Future Leaders Program and our Health Care Access Forums, both key parts of HCC’s work today. Terri’s collaboration on calls with the HTCs and national hemophilia organizations such as NHF and HFA have also provided critical support to HCC’s collaborative efforts with our partners in the bleeding disorders space.
Between 1998 and 2016, Terri led our legislative push to continue CCS protections and carve outs. Because of this work, CCS patients were guaranteed their factor. Key bills included the HCC-sponsored 2012 Clotting Factor Standards Bill (AB 389/Mitchell) and the 2013 CCS Protection bill (AB 1301/Pan), which HCC co-sponsored. Due to Terri’s advocacy, in 2014 clotting factor was “Carved Out” of Medi-Cal Managed Care Plans in California per DHCS’ then-Director Toby Douglas. At the time, hemophilia was the only disease group in CA to get this special treatment (until Medi-Cal Rx in 2022!)
In more recent years, Terri’s work for HCC has included monitoring and advocating on behalf of our community during the implementation of the CCS Whole Child Model Pilot, the COVID-19 Public Health Emergency telehealth expansion and most recently Medi-Cal Rx and CalAIM.
Terri’s yearly work on finding a sponsor for our March is Bleeding Disorders Awareness Month Resolution has also brought much needed attention to our community at the State Legislature. The resolutions also help HCC participate in NHF’s initiative to make March Bleeding Disorders Awareness Month nationwide.
It would be impossible to list all of the amazing bills and issues Terri has made possible during her 29 years with the Hemophilia Council of California. Today, we celebrate all she has accomplished over her time with HCC.
While Terri is making some changes to her client list in 2023 and will no longer be representing HCC she will always be a valued friend and ally to the bleeding disorders community.
Terri, we are going to miss your guidance, support, and positive attitude. Although we are sad you are leaving us, we are happy to know you’ll now have more time for your family and other endeavors. Thank you for your excellent service to not just HCC but to the entire California bleeding disorders community!
A few words from people at HCC who knew Terri well-
- The best memories I have of Terri was during our legislative days. I was always amazed at how many people that Terri knew in the capital. She would always take the HCC leadership team to see staff at the governor’s office, and she would not only have a professional relationship with them, but many times a personal one as well (usually through some type of youth baseball game). These strong relationships would allow us, as the HCC team, to have very candid and insightful conversations, which allowed us to be seen a bit differently than other advocacy organizations. I have always said that to be a great lobbyist it is not only about what you know and how you say it, but who you know. Terri definitely knew just about everyone or knew someone who did.
-Michael Bradley, President, Hemophilia Council of California
- Thank you, Terri for your many years of extraordinary work dedicated to the rare bleeding disorders community in California. We have made significant progress directly due to your work and we are grateful. On a personal note, I thank you for being a huge supporter of our work at HFSC and also for personally helping me with the insurance labyrinth we faced. I will miss you!
-Michelle Kim, former HFSC Executive Director
- I met Terri for the first time when she had just been hired to be the Hemophilia Council of California’s lobbyist. She was energetic, very well-informed about healthcare issues and eager to help HCC with its advocacy work. I had no idea that the two of us would end up working together for so many years, but I must say it has been a pleasure to have done so. It has also been wonderful learning from her, as I expanded my abilities to be an advocate for the bleeding disorders community. Even though Terri’s work with HCC is coming to an end, I hope to continue to work with her in some capacity in the future.
-Stephanie Dansker, Vice President, Hemophilia Council of California
- Terri has been a strong HCC advocate for several decades. She has played an essential role in:
- CA residents with bleeding disorders getting access to Hemophilia Treatment Center care
- Improving specialty pharmacy services through legislation
- Linking CIBD and Western States Region IX HTCs to the Department of Healthcare Services leaders and CCS/GHPP/Medi-Cal, CalAIM/Medi-Cal Rx program managers
- Educating Managed Medi-Cal leaders about the value of HTCs
- Youth have incredible advocacy experiences at the Capitol because of Terri and the HCC team.
It’s been an honor to work together to advocate for improved health for the California Bleeding Disorders Community. Thanking Terri for her wonderful partnership and advocacy for so many years.
-Judith Baker, DrPH, MHSA, Regional Administrator, Western States/Region IX Hemophilia Network
- There are no words to express how much you mean to us and just how grateful we will always be for your help. Your positive attitude, perseverance and willingness to champion for us as well as the bleeding disorder community makes you our hero. Thank You so much for all you have done.
With Sincere Appreciation and Profound Gratitude,
-Chris McAlister and Mason, An HCC Future Leader and his mom
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