The Embrace Kids Foundation has committed $70,000 to support the expansion of Rutgers Robert Wood Johnson Medical School (RWJMS) Comprehensive Sickle Cell Center at Rutgers Cancer Institute of New Jersey (CINJ) to include a pediatric sickle cell and hemoglobinopathies nurse navigator position.
The main focus of the new position is to enhance patient services, remove barriers to adequate care, and improve staff coordination. The nurse navigator will support the families of infants with sickle cell disease identified by newborn screening, beginning at the first point of contact and facilitate communication between the family and the center’s team.
Other tasks of the nurse navigator will include identifying clinical trials tailored to the patient’s particular characteristics; collaborating with psychosocial counselors and service organizations to guide families through available resources, as well as educate them about sickle cell disease (SCD) and treatment process; and help adolescent patients transition into an adult hematology care setting by making sure the teen patient is aware of and agrees with the treatment plan.
“Sickle cell disease is a lifelong condition that is marked by episodic medical setbacks. The impact of this disease is disruptive to the family unit on many levels,” Glenn Jenkins, executive director of Embrace Kids Foundation, said in a press release.
“The role of the Pediatric Sickle Cell and Hemoglobinopathies Nurse Navigator is integral in getting families back on track and returning a youngster to a normal childhood. Embrace Kids Foundation is pleased to be able to support this critical work in partnership with Jason and Devin McCourty through their Tackle Sickle Cell campaign,” Jenkins said.
Sickle cell disease is an inherited disorder of the red blood cells clogging the blood flow. According to the Centers for Disease Control and Prevention, it is estimated to affect nearly 100,000 Americans. The disease occurs in one in every 365 African-American births and in one in every 16,300 Hispanic-American births.
“Due to research and clinical advancements, the average life expectancy of babies born today with sickle cell disease has greatly improved, and many likely will live late into adulthood. However, this goal cannot be achieved unless medical care takes a comprehensive, multidisciplinary approach with emphasis placed on prevention of long-term complications and timely treatment,” said Dr. Richard Drachtman, MD, section chief of pediatric hematology/oncology at CINJ and professor of pediatrics at RWJMS.
“With this commitment from Embrace Kids Foundation, we will be able to further empower patients and families with the knowledge and resources necessary to assume self-care to maximize longevity and quality of life. We thank Embrace Kids Foundation for its dedication to this population,” he said.