Sickle Cell Disease Advocates Form Working Group to Map and Address Community Needs

Patients, Experts, Researchers, and Advocates Convened by the National Minority Quality Forum and the Center for Sustainable Health Care Quality and Equity to Promote Better Care and Outcomes

Washington, DC—The National Minority Quality Forum (NMQF)—one of the nation’s leading advocates for health equity—and the Center for Sustainable Health Care Quality and Equity (SHC), its wholly-owned subsidiary has convened the nation’s leading advocacy groups, experts, academic institutions, and biomedical innovators to promote sustainable, community-based and patient-centered care for those suffering from Sickle Cell Disease (SCD). The effort will include the collection and analysis of health data archived by NMQF to determine the patterns, gaps, and disparities of care for SCD in the United States.

Preliminary research by NMQF shows that approximately 100,000 Americans suffer from SCD and that they are clustered geographically. NMQF Founder, CEO, and President, and working group Chair Dr. Gary Puckrein observes that “these patients disproportionately face challenges accessing health care and adequate pain management, live at or near the poverty level, experiencing repeated hospitalizations that result in tremendous costs and, sadly, great suffering and shortened lifespans.”

With the current standard of care so poor combined with the promise of new, effective therapies, it is more important than ever to make sure that patients can access optimal treatment. Clinical experts and patient advocates collectively express the desperate need for improvement in access to care, especially for adult patients. This shared sense of urgency is what led to the creation of the SCD Working Group.

SCD is a group of inherited red blood cell disorders most often experienced by blacks, and to a lesser extent, Hispanics. Individuals with two copies of the SCD recessive gene develop the disease in childhood, suffering ongoing severe episodes of pain, along with serious complications such as severe infections, stroke, kidney failure, and ultimately a significantly reduced lifespan.

The Sickle Cell Disease Working Group will produce an up-to-date Sickle Cell Disease Index that geo-maps patients with the illness, their access to care, service utilization and costs, and social factors that form barriers to adequate treatment. The group will utilize the baseline data to develop strategies and tools for patient advocates and providers to better serve SCD patients in communities across the U.S.

Members of the SCD Working Group are listed below. To learn more about our efforts or become a member contact jlouis@nmqf.org.

 

SICKLE CELL DISEASE WORKING GROUP MEMBERS

Mary E. Brown President and Chief Executive Officer, Sickle Disease Foundation of CA

Beverley Francis-Gibson President and Chief Executive Officer, Sickle Cell Disease Association of America, Inc.

Gary A. Gibson President and Chief Executive Officer, Martin Center Sickle Cell Initiative

LaTasha H. Lee, PhD, MPH Adjunct Assistant Professor, Medical Laboratory Sciences and Health Sciences Programs, George Washington University School of Medicine and Health Sciences

William Hobbs, MD, PhD Executive Medical Director, Bioverativ, a Sanofi company – representing

Bioverativ, a Sanofi company

Jeanne Loboda Senior Director, Community Engagement and Partnership, Global Blood Therapeutics, Inc. – representing Global Blood Therapeutics, Inc.

Alecia Nero, MD, MSCS, FACP Adult and Pediatric Non-Malignant Hematologist with specific interest in Sickle Cell Disease, Children’s Health; Assistant Professor, UT Southwestern Medical Center

Tosin Ola-Weiss, RN/BSN President and Founder, Sickle Cell Warriors Inc

Subrat Roychoudhary, MBA, MS Associate Director, Novartis – representing Novartis

Nirmish R. Shah, MD Hematologist and Pediatric Hematology/Oncology specialist, Duke University Medical Center; Director, Duke Sickle Cell Transition Program.

James G. Taylor VI, MD Hematology specialist; Director, Center for Sickle Cell Disease at Howard University; Professor, Department of Medicine, Division of Hematology/Oncology

Ashley Valentine, MRes President, Co-Founder and Chief Executive Officer, Sick Cells

Julie KanterWashko, MD Pediatric Hematology/Oncology specialist; Director, Sickle Cell Disease Research Center, Medical University of South Carolina in Charleston

Wanda Whitten-Shurney, MD Pediatric Hematology/Oncology specialist; Chief Executive Officer and Medical Director, Sickle Cell Disease Association of America, Inc., Michigan Chapter