Helping Children with Blood Disorders ‘Navigate’ their Care

New Brunswick, N.J., August 24, 2016 – Thanks to a two-year, $70,000 commitment from Embrace Kids Foundation, the Rutgers Robert Wood Johnson Medical School Comprehensive Sickle Cell Center housed at Rutgers Cancer Institute of New Jersey is expanding to include a Pediatric Sickle Cell and Hemoglobinopathies Nurse Navigator position. The Center receives referrals from the state’s newborn screening program and from pediatricians in the central New Jersey region.

Sickle cell disease, an inherited disorder in which the red blood cells become hard and sticky, clogging the blood flow, affects approximately 100,000 Americans, according to the Centers for Disease Control and Prevention. The disease, which can result in repeated episodes of severe pain, infections and anemia, occurs in one in every 365 African-American births and in one out of every 16,300 Hispanic-American births. Other affected populations include those whose ancestors are from Latin America, the Caribbean, Saudi Arabia, India, and Mediterranean countries.

The primary focus of the Pediatric Sickle Cell and Hemoglobinopathies Nurse Navigator is to enhance patient services, remove barriers to care, and improve care coordination. The nurse navigator supports the families of infants identified by newborn screening, beginning at the first point of contact, and facilitates communication between the family and care team. This includes collaborating with psychosocial counselors and service organizations to direct families to various resources. The navigator also educates families about their disease and treatment process including identifying clinical trials for which the patient may be eligible. And as adolescent patients begin to transition into an adult hematology care setting, the navigator plays a vital role in making sure the teenager is informed and connected to treatment and other resources.

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,” notes Embrace Kids Foundation Executive Director Glenn Jenkins. “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.”

“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,” notes Richard Drachtman, MD, section chief, pediatric hematology/oncology at Rutgers Cancer Institute and professor of pediatrics at Rutgers Robert Wood Johnson Medical School. “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.”

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