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South Carolina’s Hemophilia and Bleeding Disorders Advocacy Coalition 
The South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition

The Coalition’s Mission: To Empower the Hemophilia and Bleeding Disorders Community in South Carolina to speak to public and private decision-makers about improving Access to Quality and Affordable Health Care and Treatment.

We are thankful to the Advocacy Coalition Committee Members who came together from all regions throughout the state and nationally, to form the South Carolina Hemophilia and Bleeding Disorders Advocacy Coalition (SCHBDAC). Our commitment to the Bleeding Disorders Association of South Carolina and all South Carolinians affected by bleeding disorders is to improve access to Quality Care and Treatment. Improving lives is our mission.

We are very grateful to our 2023 Sponsors for supporting our advocacy program and the NHF State Based Advocacy Coalition!

Novo Nordisk, INC. (Founding sponsor), Bayer Healthcare,  CSL Behring, Genentech, The Hemophilia Alliance,  Sanofi Genzyme, and Takeda for their support of the National Hemophilia Foundation State Based Advocacy Coalition (SBAC) program.

Learn about them here by clicking on their logos in this program!

Bleeding Disorders Association of South Carolina is a proud recipient of the Advocacy & Public Policy Chapter of Excellence Award of the National Hemophilia Foundation in recognition of our commitment to advocacy and education initiatives both at the state and local level, aimed at improving the lives of those in the bleeding disorders community. Learn how you can help make a difference—join our advocacy efforts today!

2023 Advocacy Summit: Access to Care and Treatment
November 10-11, 2023

Please register before the closing date: October 19th (travel accommodations)


SpringHill Suites by Marriott, Greenville Downtown

200 E. Washington St. Greenville, SC 29601


Friday: Check in 4pm – Check out Saturday noon (except for those staying 2 days)

Saturday Education Day: 9am to 4pm

Dinner Celebration:– 5:30pm – Downtown Greenville, Ink and Ivy

Join the South Carolina Advocacy Coalition, Ambassadors, and members of the community as we come together to celebrate the advocacy work of the many members of the bleeding disorders community who work hard to address barriers in access to care and treatment, and to raise their voices of concerns to promote needed change. Learn how to be involved and what you can do to shape the future of treatment care for all affected by bleeding disorders in South Carolina and around the nation. Registration is limited and hotel rooms are provided for our traveling guests. All meals are included, with a private dinner Saturday night in Downtown Greenville.

Friday, November 10, 2023

4:00pm: Hotel Check In

BDASC Registration Begins Pre-Function Hall Birch Ballrooms

  • Open Exhibits

              (Throughout the Evening)

5:00pm: Cocktails and Social Engagement Pre-Function Hall Birch Ballrooms

6:00pm: Opening Welcomes and Sponsor Recognition Welcomes – Birch Ballroom A & B

  • Sue Martin, BDASC Executive Director, State Coalition Lead, Cristal Day, Coalition Chair, James Romano, BDASC Legislative Coordinator, Aaron Smith, BDASC President


6:30pm: Buffet Dinner Opens – Pre-Function Hall Birch Ballrooms

7:00pm: The Patient Voice: Cristal Day

7:05pm: Setting the Stage for Success: Special Guest Speaker

Moving A Bill Through Committee to the Governor’s Desk; The 2024 Legislative Landscape

  • South Carolina House Representative Chandra Dillard, (D) District 23


Setting Goals for Success; Straight from the Source

Words of Encouragement

  • Josie Gamez, NBDF & Former Legislative Staffer
  • James Romano, BDASC Legislative Coordinator & President of Cure and Care


Recapping 2023 Advocacy Successes / Stakeholders Report

Sue Martin, BDASC Executive Director, State Coalition Lead

9:00pm: Social Free Time

Saturday, November 11, 2023

 7:00 – 8:15am: Breakfast Buffett (Oak & Honey Restaurant)

  • Open Exhibits

8:15am:  Teens and Tweens: Teens Leadership Alliance Check in (Hive-A-Way Room) (Entrance is next to the Valet Parking- Outside)

Morning SessionsBirch Ballroom A & B

8:30am: The Patient Voice: Sue Martin

8:35am – 10:00am: South Carolina Hemophilia Treatment Centers; Access to Care and Treatment Updates

  • Hemophilia Treatment Centers, South Carolina

Dr. Shayla Bergmann, Director Pediatric Nonmalignant Hematology, MUSC

Dr. Leslie Gilbert, Lead Hematologist Prisma Health HTC Upstate,

Dr. Stephanie Ambrose, Medical Director & Robin Jones, Nurse Coordinator, Prisma   Health HTC Mid-State

Understanding Today’s Healthcare Environment, Challenges with Access

  • Kollet Koulianos, Hemophilia Alliance

10:00am – 10:30am: Break and Open Exhibits

10:30am: The Patient Voice: Whitney Galloway

10:35am – 11:45am:    Understand Accumulator Adjustments: What is Needed for Successful Policy Change

Accumulator Adjustment Programs; Deep Dive; Lessons Learned

  • 3618
    • Kollet Koulianos, Hemophilia Alliance
    • Josie Gamez, NBDF & Former Legislative Staffer
      • Lessons Learned & National Successes
    • Identifying and Building Compelling Stories
    • Building Strength with Coalitions
      • Partnerships: Palmetto Health Collective; Industry; Non-Profits; Medical Associations
        • Sue Martin, Executive Director, BDASC
        • Drew Clawson, Kinard Consulting
        • Alison Clifford, Director, Therapeutic Policy and Advocacy, Rare Disease US Public Affairs, Takeda

11:45 – 1:00pm: Lunch Buffet and Open Exhibits (Hotel Check Out)

(Lunch buffet held in the Bee Hive Room)

Afternoon Sessions – Birch Ballroom A & B

1:00pm: The Patient Voice: Kristin Shelton

1:05 – 2:00pm: Next Steps; Passing a Bill in SC

  • We have a Hearing, Now What?
    • Voices From Texas: Successes and Lessons Learned

Melissa Compton, Executive Director, Lone Star Bleeding Disorders Foundation

Julie Fredericksen Jones, Executive Director, Texas Central Bleeding Disorders

              Josie Gamez, NBDF & Former Legislative Staffer

  • 2024 Timeline: Process to the Governor’s Desk
    • Drew Clawson & James Romano, BDASC Legislative Coordinator

2:00pm:  Break and Open Exhibits

2:30 – 3:50pm:  Direct Targeted Messaging; Marketing and Education Awareness

  • Twitter (X) & Posting (training)
  • Securing TV Interviews, Opinion Pieces
    • Social Media Training
      • Khadija Butt, Director, Rational 360

Wrapping Up: 2024 Priorities: Capital Visits and Meetings

  • January 10, 2024 Legislative Breakfast
    • James Romano, BDASC Legislative Coordinator
  • February 27-28, 2024 Advocacy Days and Pre-Meeting Training
    • 2024 Registrations on Site
      • Sue Martin, James Romano, Josie Gamez
    • Legislative Meetings January – May
      • James Romano
    • Expectations and Advocate Commitments
      • Sue Martin

3:50pm: The Patient Closing Voice: Warren Ingrum

4:00pm: Tween and Teen Certificate Presentation

5:00pm: Dinner Event, Downtown Greenville at the Ink N Ivy Restaurant third floor private dinning space, 21 E Coffee St, Greenville, SC 29601

Appetizers begin at 5:00pm with Dinner Buffet at 5:45pm

Building Our Future Leaders: Teen Leadership Alliance

Please bring your tweens and teens, ages 11 to 18 yrs as we continue to build the future voices in leadership for South Carolina’s Bleeding Disorders Community. We are excited to announce we are hosting this day event concurrently during our adult sessions and bringing in from Oregon some advocates who have been part of great advocacy leadership programs. Our Teen Leadership Alliance program provides leadership training to tweens and teens in transitioning to adulthood and develops advocacy skills for those affected by bleeding disorders themselves or within their families. They will find out more about their important role in the government process and to effectively advocate for themselves and their families through all areas of life. Together, this interactive and fun day will build connections within our community tweens and teens, and can have lasting memories of bonding with others with the same understanding of living with bleeding disorders within their families. The program will provide them a voice in leadership and what is important to them. Our older teens will also provide mentorship with the younger tweens during the event programming.

         We are Grateful to our Fall Advocacy Sponsors!
Diamond Year-Round Advocacy Sponsor
Premier Advocacy Sponsors
Platinum Advocacy Sponsors
Advocacy Event Sponsors
       2023 Advocacy Coalition Members
Coalition Chair: BDASC Member: Cristal Day – Pickens County
SC State Coalition Lead: BDASC Executive Director: Sue Martin – Greenville County
BDASC President: Aaron Smith - Richland County
BDASC Member: Renita Johnson – York County
BDASC President: Shelley Crisp – Berkeley County
Taylor Upton
BDASC Board Member: Taylor Upton– Anderson County
Coalition Vice Chair: BDASC Board Treasurer: Joey Krakowiak, MD - Aiken County
BDASC Member: Tim Swanburg - Kershaw County
Sherlene Maloy
BDASC Board Member: Sherlene Maloy - Dorchester County
Edna Rabb
BDASC Board Member: Edna Rabb - Fairfield County
BDASC Member: Kristin Shelton - Fairfield / Richland County
BDASC Member: Candi Mitchum - Leesville County
BDASC Board Secretary: Samantha Javorka - Dorchester County
BDASC Member: Amelia Tejiram - Spartanburg County
BDASC Member
Coalition Stakeholder Members

James Romano: BDASC Legislative Coordinator

  • Nathan Schaefer, Vice President of Public Policy, National Hemophilia Foundation
  • Josie Gamez, Government Relations Manager, National Hemophilia Foundation
  • Miriam Goldstein, Policy Director & Principal Legal Counsel, Hemophilia Federation of America
  • Kollet Koulianos, Senior Director, Payer Relations, National Hemophilia Foundation
  • Drew Clawson, Kinard Consulting, SC PhRMA Alliance Development
  • Sean Singh, Vice President Operations, Hemophilia Alliance
  • Annissa Reed, State Policy Manager, Eastern US, National Organization for Rare Diseases
  • Erin Foote Morgan, Partnership Director, Chronic Disease Coalition
  • Alison Clifford, Director, Therapeutic Advocacy and Policy, Takeda
  • Marcus Downs, Associate Director of U.S. Public Affairs, Southeastern Region, Takeda
  • Karla White, Senior Manager for U.S. Patient Advocacy, CSL Behring
  • Emily Ogden, Government Affairs, CSL Behring
  • Vitoria Cunningham, Government Affairs, Pfizer
  • Melissa Bishop-Murphy, Senior Director, National Government Relations & Multicultural Affairs, Pfizer
  • Gina Marie Dalferro Truslow, Senior Manager, Patient Advocacy Relations, Genentech
Advocacy Coalition Member Partners:
Advocacy Ambassadors

A vital component of the Advocacy Coalition is the Ambassador Program, which comprises volunteer members in leadership positions tasked with establishing a strong grassroots network of bleeding disorders advocates throughout the state.  Ambassadors serve as liaisons between the Advocacy Coalition and the public, focusing on increasing awareness of rare bleeding disorders and the challenges individuals and their families affected by them face. They also function as “county captains,” meaning that they serve as a regional or county resource and connection for people who have been, or have family members who have been, newly diagnosed, or who, for whatever reason, simply need information about issues (e.g., school nursing; educational resources; clinics and hospitals) relevant to bleeding disorders, particular to that county or region of the state.  If you would like to be put in touch with someone in your county who may be a helpful source of information and support to you and your family, please contact the chapter, and we will put you in touch with someone who can help.

           Coalition Advocacy Ambassadors
             20 State Counties Represented

if you don’t see your county represented, consider joining our robust advocacy program and be a voice for your community! Contact Sue Martin, Advocacy Coalition lead to find our how you can get involved today!


April Baird representing Laurens County

Virginia Snead representing Laurens County

Martha Breitweiser representing Pickens County

Mike and Ann Ravan representing Spartanburg County

Mike Walden representing Union County

Felicia Alexander representing Greenville County

Meggan Burton representing Greenville County

Eric Dunton representing Spartanburg County 

Michelle Jackson representing Abbeville County

Corrie Snider representing Spartanburg County

Mandy Weber representing Greenville County

Brenda and Leroy Garrett representing Laurens County

Dana Gurley representing Anderson County

Ric Martin, representing Greenville County

Taylor Upton, representing Anderson County


Christine Evans representing Lexington County,

Ward and Marilyn Keith representing Lexington County

Tiffany Maness representing Richland County

Brantley Smith representing Richland County

Mattie Watkins representing Richland County

Bonnie Phifer representing Aiken County

Jean Ford representing Sumter County

Edna Rabb representing Fairfield County

Holly Penfield representing Lancaster County

Demetrio Lopez and Miguelina Huerta representing Newberry County

Rolando Lopez and Sarali Hcosta representing Newberry County

James and Waltene Whitmire representing Richland County

Rimica Brown representing York County

Kristin Shelton, representing Fairfield / Richland County


Mike and Brent Maloy representing Dorchester County

Woody Ford representing Horry County

Whitney Gallaway representing Horry County

  • 10th – Bleeding Disorders Advisory Committee (Industry) Meeting – Advocacy Coalition Call
  • 12th – Legislative Breakfast, Columbia
  • 19th – Advocacy Coalition Call
  • 1st- P & T Committee Meeting
  • 2nd – Virtual Advocacy Days, Pre  State Days Training
  • 17th – Advocacy Coalition Call
  • 23rd – Rare Disease Educational Dinner
  • 28th – Rare Disease Day Celebration
  • 28th  – State Legislative Days Training
  •  Awareness Celebration & Campaign Educational Event
  • 1st – BDASC’s Advocacy Legislative Days
  • 8-10th  – NHF Washington Days 
  • 16th – Advocacy Coalition Call
  • 17th – World Hemophilia Day Chapter Celebration
  • 20th  – Advocacy Coalition Call
  • 3rd – P & T Committee Meeting
  • 9th – Bleeding Disorders Advisory Committee (Industry) Meeting
  • 18th – Advocacy Coalition Call

15th – Advocacy Coalition Call

  • 20st – Advocacy Coalition Call
  • 2nd – P and T Committee Meeting
  • 17th – Advocacy Coalition Call
  • 12th – Bleeding Disorders Advisory Committee (Industry) Meeting
  • 21st  – Advocacy Coalition Call
  • 19th – Advocacy Coalition Call
  • 1st – P and T Committee Meeting
  • 10 – 11th – All Coalition Advocates State Meeting and Fall Training (Stakeholders Meeting)
  • 16th – Advocacy Coalition Call
  • 21st  – Advocacy Coalition Call


Additional Advocacy Events in 2023 – to be scheduled throughout the year!

  • NHF Insurance and Reimbursement Conference
Coalition Press Releases

Patient Advocates and Stakeholders Meet In Greenville To Discuss 2020 Outlook
By Jeremy Williams

On Friday, November 8, more than 30 advocates, healthcare professionals, policy experts, government officials, and industry representatives met in Greenville to continue ongoing discussions begun at HSC’s “South Carolina Bleeding Disorders Challenge” forum in 2018, regarding access to healthcare for persons with bleeding disorders living in the state. The day kicked off with heartfelt and moving personal stories from four HSC advocacy members: Cristal Day (Advocacy Coalition chair), Jameelah Malcolm, Eric Dunton, and Meggan Burton (Advocacy Ambassadors). Each of them offered compelling life lessons involving their (and their family members’) persistence in confronting the challenges of living with a bleeding disorder. MORE>>

Government Officials, Medical & Policy Experts, and Patient Advocates Meet in Columbia for Bleeding Disorders Forum

(Greenville, South Carolina) — On Thursday, August 16, and Friday, August 17, 2018, approximately 47 policy experts, government officials, medical professionals, and bleeding disorders advocates, met in Columbia, South Carolina, to address access to healthcare issues at a forum titled The South Carolina Challenge, coordinated by Hemophilia of South Carolina (HSC) and their Advocacy Coalition. MORE>>

2023 Governor's Proclamation
2023 Advocacy program Grass Root Year-round Sponsors
Proud member of the PHC!