PRECONCEPTION: The Importance of Integrating Sickle Cell Disease and Thalassemia Screening in Pre-Conception Health Care

The Importance of Integrating Sickle Cell Disease and Thalassemia Screening in Pre-Conception Health Care


Office of the Regional Health Administrator

Office of Family Planning

Office of Minority Health

Office on Women’s Health


Cicatelli Associates, Title X Regional Training Center

Clinical Directors Network, Inc.

New Jersey Family Planning League

New York University College of Nursing


Why is this issue important?

Sickle Cell Disease (SCD) and Thalassemia present unique challenges to individuals, families and heath care providers. As inherited blood diseases with no cure, individuals living with SCD or Thalassemia face numerous challenges throughout their life span – serious health complications, fragmented services, limited access to comprehensive heath care services, socioeconomic and discrimination. SCD and Thalassemia have not been recognized as a priority for public health despite many years of research and advancement in treatment approaches.What has been done?
In the past 100 years since James Herrick’s first description of SCD in the United States, there has been gradual progress in management of the disease. Newborn screening for SCD and Thalassemia are mandated nationally and positive cases are referred for follow-up care. Over the years the US Department of Health and Human Services has supported research and programs addressing genetic disorders. Most recently one of the Family Planning Program Priorities emphasizes the importance of counseling family planning clients on establishing a reproductive life plan, and providing preconception counseling as a part of family planning services, as appropriate. However, much need to be done in reaching out and educating immigrant populations unaware of their genetic disorders; counseling individuals with traits.

What is the meeting’s goal?

The goal of the meeting is to raise the awareness of SCD and Thalassemia, for which public health issues remain real challenges for individuals and families. The learning objectives are to explore issues related to SCD and Thalassemia, screening and counseling during pre-conception, practices in clinical care, and strategies for enhanced health service delivery to better support individuals and families in disease management. The meeting will conclude with a call to action for improved public health education, increased screening and counseling, and more coordinated and sustained care in order to recognize SCD and Thalassemia as a public health priority.Target Audience

The target audience is professionals working in family planning and primary health care, minority health, women’s health, pediatrics, and related fields. Those working in health promotion and disease prevention, as well as in care and treatment are invited to attend. These may include: physicians, physician assistants, nurses, nurse-midwives, health educators, genetic counselors, social workers, dietitians and other primary health care providers.


26 Federal Plaza
New York. NY 10278


Friday, December 10, 2010 8:15 AM – 3:00 PM EST

9:15 AM Welcome & Overview

April Velasco, PhD

Acting Regional Health Administrator, US Department of Health and Human Services – Region II

9:30 AM Pre-Conception Care: Every Woman, Every Time

Peter Bernstein, MD, MPH

Professor of Clinical Obstetrics & Gynecology – Women’s Health, Director of the Fellowship Program in Maternal Fetal Medicine, Montefiore Medical Center/Albert Einstein College of Medicine

10:00 AM Pre-Conception Care and Genetic Counseling

Samuel L. Jacobs, MD

Medical Director, Planned Parenthood of Southern New Jersey

10:45 AM The Impact of Hemoglobinopathy Diseases on Individuals, Families and Society

Althea M. Grant, PhD

Commander, U.S. Public Health Service, Chief, Epidemiology and Surveillance Branch, National Center for Birth Defects and Developmental Disabilities, Division of Blood Disorders

11:15 AM The Many Faces and Many Voices of Sickle Cell Disease and Thalassemia

Moderator and Contributor

Donnette Carroll

President, Sickle Cell/Thalassemia Patients Network

Mary Dasu

Vickky Glarum

Elke Perez

1:15 PM History of Sickle Cell Disease and Current Challenges of Serving the Adult Population

Patricia Shi, MD

Assistant Professor, Hematology-Oncology, Director, Adult Sickle Cell Program, The Mount Sinai School of Medicine

1:45 PM Meeting the Unique Health Needs of Sickle Cell/Thalassemia Children

Pedro Juan Santiago Borrero, MD, Director Center for Hereditary Diseases, University of Puerto Rico Pediatric Hospital

2:15 PM Addressing Health Services for Thalassemia Clients

Richard Drachtman MD

Interim Director, Pediatric Hematology Oncology, Cancer Institute of New Jersey, Professor of Pediatrics, Robert Wood Johnson Medical School

Beth Savage, MSN, CPNP, CPON

Nurse Practitioner, Pediatric Hematology Oncology, Cancer Institute of New Jersey

3:00 PM Call to Action/ Next Steps