Office of Legislative Services
State House Annex
P.O. Box 068
Trenton, New Jersey 08625
Legislative Budget and Finance Office
Phone (609) 847-3105
Fax (609) 777-2442
www.njleg.state.nj.us
LEGISLATIVE FISCAL ESTIMATE
ASSEMBLY, No. 1988
STATE OF NEW JERSEY
220th LEGISLATURE
DATED: FEBRUARY 28, 2022
SUMMARY
Synopsis: Establishes central registry for sickle cell trait diagnoses; provides for
informational outreach and genetic counseling.
Type of Impact: Annual increase in State General Fund expenditures; potential periodic
increase in State revenue.
Agencies Affected: Department of Health, University Hospital, the Judiciary.
Office of Legislative Services Estimate
Fiscal Impact Year 1 Year 2 Year 3
State Cost Increase $500,000-$600,000 $250,000-$500,000 $250,000-$500,000
Potential State Revenue
Increase Indeterminate
The Office of Legislative Services (OLS) estimates that the bill would initially increase
Department of Health expenditures by approximately $500,000 to $600,000 in order for the
department to develop the databases to establish a central registry of newborns screening
positive for sickle cell trait, produce and provide parents with information about genetic
counseling, and hire staff to process the registrations.
Annual costs thereafter are estimated at approximately $250,000 to $500,000 for ongoing
patient registration and other administrative functions of the program. This estimate is based
on the annual costs for the operation of the State’s autism registry, which involves more annual
registrations than will the sickle cell trait registry. State costs associated with parental and
patient notifications at various points as required by the bill are unlikely to materialize for
many years.
University hospital, an independent non-profit legal entity that is an instrumentality of the State
located in Newark, may experience a marginal increase in annual expenditures, to the extent
that the hospital does not already notify parents of newborns screening positive for sickle cell
trait, to provide those parents with information about the availability and benefits of
counseling, intervention, and educational services for patients with sickle cell trait.
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BILL DESCRIPTION
This bill requires the department to establish a central registry of newborn patients
diagnosed with sickle cell trait and provide information about available counseling,
intervention, and educational services to patients and their parents at certain intervals.
Currently, all newborns in the State are screened for a number of genetic and biochemical
conditions, including sickle cell trait.
The bill requires the establishment of a system by which the department would periodically
notify the parents of patients listed in the registry that follow-up medical consultations may be
beneficial for children diagnosed with sickle cell trait. The department is to provide parental
notification at least two times during the patient’s adolescence and at other intervals as may
be required. The bill further requires the department to notify patients who have reached the
age of 18 years of the patient’s inclusion in the registry and of the availability of educational
services, genetic counseling, and other resources.
The department is to utilize information contained in the central registry to compile
statistical information and facilitate the provision of follow-up counseling, intervention, and
educational services for patients included in the registry and the patients’ parents. Central
registry information will be confidential, and a person who unlawfully discloses the
information will be guilty of a disorderly persons offense, which is punishable by
imprisonment for up to six months, a $1,000 fine, or both.
FISCAL ANALYSIS
EXECUTIVE BRANCH
Although the Department of Health has not prepared a formal fiscal note for the bill, it provided
background information concerning the current newborn screening and parental notification
processes for sickle cell trait and sickle cell disease.
In response to an OLS inquiry, the department stated that the existing newborn screening
follow-up program, which notifies physicians and parents in the case of a positive screening result
for certain heritable diseases, lacks the infrastructure, resources, and staff to provide the
longitudinal follow-up or manage the volume of notifications that would be required under the bill.
By way of example, the department cited the birth defects and autism registry program, which
employs six full-time employees to process 11,000 one-time registrations annually, and does not
provide the longitudinal patient follow-up required under this bill. The department also noted that
additional resources would be required in order to develop the databases underpinning a new
central registry for patients screening positive for sickle cell trait.
According to the department, 2,904 newborns screened positive for sickle cell trait in 2020,
the most recent year for which data are available, which is a 5.5 percent increase over the number
of newborns screening positive in 2019.
OFFICE OF LEGISLATIVE SERVICES
The OLS estimates that the bill would initially increase Department of Health expenditures by
approximately $500,000 to $600,000 in order for the department to develop the databases to
establish a central registry of newborns screening positive for sickle cell trait, produce and provide
parents with information about genetic counseling, and hire staff to process the registrations.
Annual costs thereafter are estimated at approximately $250,000 to $500,000 for ongoing patient FE to A1988
3
registration and other administrative functions. This estimate is based on the costs for the operation
of the State’s autism registry, which is $500,000 annually. As mentioned above, the Executive
has stated that there are six full-time employees processing about 11,000 registrations annually for
the autism registry program. The sickle cell trait registry program would be smaller, with 2,904
newborns screening positive for sickle cell trait in 2020. If half the number of employees are
needed to operate the sickle cell registry program, the OLS believes that an annual cost estimate
in the range of $250,000 to $500,000 is reasonable considering the department may have additional
fixed costs related to the program.
Under the bill, the department is to establish a system to notify the parents of patients who are
listed in the registry that follow-up consultations with a physician are recommended for children
diagnosed with sickle cell trait. The bill also requires that the department is to contact the patient
upon reaching 18 years of age. The newborn screening follow-up program does not currently have
a notification system in place specifically for sickle cell trait so a new process would have to be
established. However, the costs associated with establishing the notification process are unlikely
to materialize for many years due to the fact that the requirement for parental follow-up is to begin
when the patient is in early adolescence.
In establishing the unlawful disclosure of registry information as a disorderly persons offense,
punishable by imprisonment for up to six months and a fine of $1,000, or both, the bill could result
in a periodic increase in State costs to the Judiciary and a periodic increase in State fine revenue.
University hospital may experience a marginal increase in annual expenditures, to the extent
that the hospital does not already notify parents of newborns screening positive for sickle cell trait,
to provide those parents with information about the availability and benefits of counseling,
intervention, and educational services for patients with sickle cell trait.
The OLS notes that the Centers for Disease Control and Prevention has provided grants to nine
states for the sickle cell data collection program. These states are North Carolina, Georgia, Indiana,
Michigan, Minnesota, California, Alabama, Tennessee, and Virginia.
Section: Human Services
Analyst: Anne Cappabianca
Associate Fiscal Analyst
Approved: Thomas Koenig
Legislative Budget and Finance Officer
This legislative fiscal estimate has been produced by the Office of Legislative Services due to the
failure of the Executive Branch to respond to our request for a fiscal note.
This fiscal estimate has been prepared pursuant to P.L.1980, c.67 (C.52:13B-6 et seq.).