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                        South Carolina 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 2022 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!

       2022 Advocacy Coalition Members
Coalition Chair: BDASC Member: Cristal Day – Pickens County
Coalition Lead: BDASC Executive Director: Sue Martin – Greenville County
BDASC Vice President: Aaron Smith - Richland County
BDASC Member: Renita Johnson – York County
BDASC President: Shelley Crisp – Berkeley County
BDASC Board Member: Wendy Legrand – Berkeley County
Coalition Vice Chair: BDASC Board Member: Joey Krakowiak, MD - Aiken County
BDASC Member: Tim Swanburg - Dorchester County
Sherlene Maloy
BDASC Board Member: Sherlene Maloy - Dorchester County
Coalition Stakeholder Members
  • 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
  • Kerri Nelson, South Carolina State Ambassador, Rare Action Network, 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
  • All Copays Count Coalition, Anna Hyde, VP Advocacy and Access, Arthritis Foundation
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.

           Advocacy Ambassadors 18 State 
                      Counties Represented
Upstate

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 Spartanburg County

Midstate

Christine Evans representing Lexington County,

Jameelah Malcolm representing Lexington County

Gene Wilson 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 Richland 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

Lowcountry

Paige Hughes representing Berkeley County,

Laurie Thompson representing Berkeley County

Mike Maloy representing Dorchester County

Tim Swanburg representing Dorchester County

Woody Ford representing Horry County

Samantha Javorka representing Dorchester County

  • 11th – Bleeding Disorders Advisory Committee (Industry) Meeting
  • 20th – Advocacy Coalition Call
  • 17th – Advocacy Coalition Call
  • 28th – Rare Disease Day Celebration
  •  Awareness Celebration & Campaign Educational Event
  • 1-2nd – NHF Washington Days (Virtual)
  • 8 – 9th – HSC’s Advocacy Training and Legislative Days
  • 17th – Advocacy Coalition Call
  • 14th – World Hemophilia Day Celebration
  • 17th – World Hemophilia Day
  • 21st – Advocacy Coalition Call

 10th – Bleeding Disorders Advisory Committee (Industry) Meeting

  • 19th – Advocacy Coalition Call

16th – Advocacy Coalition Call

  • 21st – Advocacy Coalition Call
  • 18th – Advocacy Coalition Call
  • 13th – Bleeding Disorders Advisory Committee (Industry) Meeting
  • 15th – Advocacy Coalition Call
  • 20- Advocacy Coalition Call
  • 12th – NHF BDASC Stakeholders Meeting
  • 17th – Advocacy Coalition Call
  • 15th – Advocacy Coalition Call

 

Additional Advocacy Events in 2022 – to be scheduled throughout the year!

  • NHF Insurance and Reimbursement Conference
The following Advocacy Groups have Committed to advocate on behalf of H4987

-All Copays Count Coalition
-Allergy & Asthma Network

-Alliance For Patient Access
-American Cancer Society Cancer Action Network
-American Diabetes Association
-Arthritis Foundation
-Association for Clinical Oncology
-Bleeding Disorders Association of South Carolina
-Chronic Care Policy Alliance
-Coalition of State Rheumatology Organizations
-Community Oncology Alliance
-Hemophilia Alliance
-Hemophilia Federation of America
-HIV+HEP Policy Institute
-Immune Deficiency Foundation
-International Foundation for Autoimmune & Autoinflammatory Arthritis (AiArthritis)
-Lupus and Allied Diseases Association
-NAMI SC
-NAMI – Piedmont Tri-County
-National Eczema Association
-National Hemophilia Foundation
-National Multiple Sclerosis Society
-National Psoriasis Foundation
-South Carolina Advocates for Epilepsy
-South Carolina Oncology Society
-Spondylitis Association of America

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>>

2022 Advocacy program Grass Root Year-round Sponsors