Conaway, Wimberly, Holley & McKnight Bill Creating Sickle Cell Trait Registry Gains Assembly Panel OK

(TRENTON) – Legislation Assembly Democrats Herb Conaway, M.D., Benjie Wimberly, Jamel Holley and Angela McKnight sponsored to establish a confidential central registry of newborns diagnosed with sickle cell trait was approved by an Assembly panel on Monday.

The term sickle cell disease (SCD) describes a group of inherited red blood cell disorders. People with SCD have abnormal hemoglobin, which is a protein in red blood cells that carries oxygen throughout the body. People who have SCD inherit two abnormal hemoglobin genes, one from each parent. According to the National Heart, Lung and Blood Institute, people with SCD may experience acute or chronic pain, have severe anemia, be more susceptible to infections and experience a host of other serious health problems.

“Individuals with sickle cell trait can make the best choices about their health only if they know that they have the trait,” said Conaway (D-Burlington). “This bill will help empower those who carry sickle cell trait to make informed decisions.”

The bill (A-2184) would require the Department of Health to create the registry, which would serve to make individuals aware of their sickle cell trait status. The legislation would also promote counseling, intervention and educational services for patients and their parents.

An estimated three million people in the United States carry sickle cell trait, according to the Centers for Disease Control and Prevention. However, the disease is more prevalent in the African American community where approximately one in 13 babies is born with sickle cell trait and approximately one in every 365 children is born with sickle cell disease. Newborn screening programs in all 50 states require the identification of individuals with sickle cell trait or sickle cell disease shortly after birth, but many with sickle cell trait live unaware of their status.

“A simple blood test is all it takes for an individual to know whether he or she carries the sickle cell trait, but the majority of Americans are unaware of their status,” said Wimberly (D-Bergen/Passaic). “By increasing the number of people who know whether they are carriers of this trait, we can potentially decrease the prevalence of sickle cell disease, an illness that can lead to very serious chronic health complications.”

As is the case for several conditions, all New Jersey newborns are screened for sickle cell anemia, and the Department of Health requires that their parents be informed of the results. The bill would require screening laboratories to also notify a newborn’s physician and document the diagnosis in the central registry if, upon screening, a patient tests positive for sickle cell trait. The Department of Health would coordinate notification of the patient.

“As we say so often, knowledge is power. In this case, knowledge can also be life-saving,” said Holley (D-Union). “Thanks to so many advances in medicine it’s now possible to prevent sickle cell disease if both parents are aware that they are carriers. This can help eliminate a lifetime of pain and health issues.”

The bill would also require physicians to provide the patient’s parents with information on the benefits of consultation with a licensed genetic counselor. Such counseling would include, at minimum, notifying the parents that at least one of them carries sickle cell trait and that any other child born to them may also carry sickle cell trait or be born with sickle cell anemia.

“Sickle cell disease is typically only passed on to a child if both parents carry an abnormal hemoglobin gene,” said McKnight (D-Hudson). “Since the disease can present debilitating, life-long side effects, it’s important that parents understand the risk of potentially passing this onto their child. Creating a sickle cell registry will help parents make informed decisions when starting a family.”

The bill was released by the Assembly Health and Senior Services Committee chaired by Conaway.