California Newborn Screening Hemoglobin Trait Followup Program Marlene

California Newborn Screening Hemoglobin Trait Follow-up Program Marlene Espinoza, MPH, Certified Hemoglobin Trait Counselor Director of Newborn Screening, Sickle Cell Disease Foundation

Disclosure Statement I have no actual or potential conflict of interest in relation to this program/presentation.

Discuss Learning Objectives Discuss the benefits and challenges of obtaining parent testing for hemoglobin screen-positive newborns. List three topics that hemoglobin trait counselors discuss with parents of newborns identified with hemoglobin trait by the California Newborn Screening Program. Describe the preferred methods of communication about hemoglobin trait among mothers of newborns identified with hemoglobin trait by the California Newborn Screening Program.

History of CA Newborn Screening Program: SCT and SCD Since February 1990, the California NBS Program has been testing newborns for sickle cell disease and related hemoglobin disorders. Babies identified with a hemoglobin disorder are referred to a Newborn Screening Area Service Center (ASC) who work with the baby’s primary care physician to arrange for special care services. The screening also identifies babies with certain hemoglobin traits.

Hemoglobin Trait Follow-up Program ü Parents of infants identified with sickle cell trait, hgb C trait and hgb D trait receive a letter by mail notifying them of their newborn’s trait status. ü Letter gives parents general trait information, states that trait is NOT a disease and encourages parents to call toll free 800 number to speak to a State certified trait counselor. ü Parents call the toll free 800 number speak to a State certified trait counselor about their baby’s trait.

NBS Trait Counseling Process Ø Ø Ø Ø A free phone or face-to-face counseling session is provided to parents. Average counseling session lasts approx. 45 minutes. Paperwork and consents are sent to parents via email or regular mail. Parents respond with signed consent forms and lab authorization paperwork is sent to parents. Parents take paperwork to a designated Quest Diagnostics location near them. Quest Diagnostic performs blood draw, bills state of CA NBS Program. Results available within 2 -4 weeks in Quest Quannum. Results counseling provided and copies of lab results sent to parents.

Prevalence of SCT & SCD among Latinx in the U. S. SCT: 1 in 180 Hispanic births (Hb: AS) SCD: 1 in 16, 300 Hispanic births (Hb: SS, SC, SD, SE) (CDC, 2017)

Latinx families and NBS Counseling For FY 2018 -2019 approx. Increasing number NBS calls are Spanish speaking families. Mostly Hgb: AS (89%), Hgb: AD (6%), Hgb: AC (5%) Have limited knowledge on how SCD/SCT is inherited, have never heard of it SCT: often willing to participate in hgb testing (SCDF, 2019)

1 st parent trait letters that are returned/undeliverable are now being followed-up by SCDF. Certified hgb counselor, calls all available contact numbers. 1 st Parent Trait Letters (Returned Parent Letters) 3 contact attempts made over a 30 -45 day period. All contact attempts documented in SIS. After 3 attempts, case remains open- in case parents reach out to us in the future.

NCAA NBS Result Requests Most U. S. states test at birth, but most athletes are unable of their trait status. The NCAA recommends that athletes departments confirm the sickle cell trait status in all student-athletes. During intense exercise, athletes with sickle cell trait have experienced significant physical distress, often leading to collapsing or death. NCAA, 2019 http: //www. ncaa. org/sport-science-institute/sickle-cell-trait

Resources and Contacts CA Newborn Screening Hemoglobin Trait Follow-up Program NBS Counseling Line: 1 -866 -954 -2229 Sickle Cell Disease Foundation (SCDF) 909 -743 -5226 or info@scdfc. org CA State Certified Hgb Trait Counselors Marlene Espinoza, MPH, Program Director Eileen Murray, Counselor Deborah Green, Counselor