BDASC State Capitol Advocacy Days
State Capitol Advocacy Days: February 25 – 26, 2025
February 25, 2025 (Training Evening) 4pm
February 26, 2025 (Legislative Meetings) 8am – 2pm
Hosting Hotel:
Courtyard by Marriott USC Columbia Downtown
630 Assembly St, Columbia, SC 29201

Join us for our Annual Advocacy and State Legislative Days as we prepare for March,  the National Bleeding Disorder Awareness Month. Our event will be held live with virtual meetings available for those unable to attend in person. We will be requesting proclamations throughout the state recognizing this special awareness month and attending event ceremonies as available.  BDASC, along with our national partners, will be hosting advocacy training sessions leading up to our state days.  This important advocacy event fosters educational awareness with state legislators on the effects living with a bleeding disorder can have on individuals and families. You will have the opportunity to have important discussions and to ask for support on key areas of concern for access to affordable treatment care. Since its inception, our State Capitol Advocacy Days have provided for over 637 individual meetings with the SC House of Representatives and our State Senators from districts throughout the state. These meetings are of key importance in helping our elected officials understand our communities unique needs, how access to medications and treatment are critical,  and asking for support of our state programs that provide a safety net to those in need. Health care access is continuously challenging, including the barriers to high cost medications needed by individuals with bleeding disorders. Only you can help remove these barriers with your advocacy participation! This advocacy event is for the whole family with teen programming included. Thank you for raising your voice!

Advocacy training is provided in partnership with our national organizations and the South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition and Ambassadors; The National Bleeding Disorders Foundation, Hemophilia Federation of America, our stakeholders, and other local and national advocacy partners. 

Registration is required for meetings and travel grants are available for hotel stays as funding allows. All food, meeting space, and educational materials are included for members of BDASC.

Featuring: Patient Advocate, Whitney G.

Description: From tears to triumph: navigating the complexities of healthcare access for bleeding disorders, a heartfelt journey urging policymakers to support fair legislation like the HELP Copays Act for accessible and equitable healthcare.

Discussion Questions: 

  1. How do accumulator adjusters and changes in insurance coverage impact patients and families managing chronic conditions like hemophilia, and what strategies can be implemented to mitigate these challenges?
  2. How can the healthcare system be improved to ensure that patients and their families are adequately informed about critical coverage changes, especially regarding copay assistance programs and accumulator adjusters?
  3. What role do copay assistance programs play in alleviating the financial burden on families dealing with high medical costs, and what challenges do they face in light of complex insurance policies?

Featuring: Advocate Expert, Sue Martin

Description: Navigating the treacherous terrain of rare disease healthcare, battling copay accumulator adjusters, and fighting for fair access to life-saving treatments.

Discussion Questions: 

  1. In what ways can healthcare providers better communicate and educate patients about the complexities of insurance policies, including accumulator adjusters and maximizers?
  2. What role do drug manufacturers, Pharmacy Benefit Managers (PBMs), and insurers play in creating a more transparent and affordable healthcare system for patients with rare or expensive diseases?
  3. How can healthcare systems incorporate patient feedback and experiences into policy changes to ensure fair and equitable access to medications for individuals with high-cost conditions?
Join us on January 15th

On behalf of Bleeding Disorders Association of South Carolina, we invite you to join us for our annual legislative breakfast!

help us raise awareness with proclamations
With Appreciation to our 2025 Advocacy Days Sponsors!
Thank you to our Premier Dinner Sponsor and Diamond Year-round Advocacy Sponsor!
Thank you to our State Based Advocacy Coalition Partner and Sponsor!