BILL NUMBER: S7929 REVISED 1/12/24
SPONSOR: HOYLMAN-SIGAL
 
TITLE OF BILL:
An act to amend the social services law, in relation to payment for
rapid whole genome sequencing
 
PURPOSE OR GENERAL IDEA OF BILL:
 
SUMMARY OF PROVISIONS:
Section one adds a new section 367-x to the social services law.
Subdivision one of section one defines "rapid whole genome sequencing."
Subdivision two requires that one year after the effective date of the
section and subject to approval by the Centers for Medicare and Medicaid
Services, the Medicaid commissioner shall authorize the disbursement of
Medicare and Medicaid funds to patients who are under 21 years of age,
have an acute illness of unknown etiology and are receiving hospital
services in an intensive care unit.
Subdivision three outlines evidence-based criteria on which payment
provided pursuant to the new section may be based. Subdivision four
authorizes the commissioner to add conditional criteria for Medicaid and
Medicare payments based on new medical evidence.
Subdivision five outlines the primary that the primary use of genetic
data generated as a result of rapid whole genome sequencing is to assist
the medical team and treat the patient, that such data is subject to
HIPAA protections, and that such data may be used for research purposes
with the consent of the patient or their legal guardian.
Subdivision six authorizes the commissioner to promulgate rules and
regulations necessary to implement the section.
Section 2 is the effective date.
 
JUSTIFICATION:
Rapid whole genome sequencing (rWGS) is an innovative method of quickly
diagnosing medical conditions stemming from genetic disorders in order
to treat patients in medical crises. Unlike traditional genetic testing,
rWGS analyzes a person's entire DNA sequence, rather than just a few
genes. This makes it especially helpful in quickly diagnosing genetic
medical conditions.
Genetic disorders are a leading contributor to death in neonatal and
pediatric intensive care units in the United States. A University of
California-San Francisco study found that when rWGS was used to treat
infants suspected to have genetic diseases, 40% got a diagnosis within
about a week reducing their hospital stay and resulting in changed
medical care in one of three patients.
Despite rWGS's dramatic promise in neonatal critical care, few hospital-
ized infants undergo rWGS, oftentimes because many private and public
health insurers will not cover the expense, which can cost up to $8,000.
Some private health insurers, such as UnitedHealthcare and Cigna,
already cover rWGS testing. But because four in ten children are covered
by Medicaid in their first year of life in the United States, Medicaid
coverage of rWGS would have a dramatic impact on access to rWGS and
infant health. Eight state Medicaid programs have added or will soon add
rWGS coverage since 2021.
A 2020 analysis of proposed rWGS Medicaid coverage in Florida found that
savings to the state resulting from enhanced neonatal care enabled by
rWGS would far outweigh the costs. Savings were estimated to exceed $3.7
million a nearly $2.9 million return on investment.
This bill would authorize the Medicaid commissioner to expand Medicaid
coverage to rWGS testing when medically indicated, according to
evidence-based criteria.
 
PRIOR LEGISLATIVE HISTORY:
This is a new bill.
 
FISCAL IMPLICATIONS:
To be determined.
 
EFFECTIVE DATE:
This act shall take effect immediately.