New York S 9638: Relates to payment for rapid whole genome sequencing

Bill Text

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S09638 Summary:

BILL NOS09638 

&nbsp

SAME ASSAME AS A01977

&nbsp

SPONSORFAHY

&nbsp

COSPNSR

&nbsp

MLTSPNSR

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Add §367-z, Soc Serv L

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Directs the commissioner of social services to authorize the payment of medical assistance funds for rapid whole genome sequencing for persons under twenty-one years of age under certain medical circumstances.

Go to top S09638 Actions:

BILL NOS09638 

&nbsp

03/31/2026REFERRED TO HEALTH

Go to topS09638 Committee&nbspVotes:

Go to topS09638 Floor&nbspVotes:

There are no Assembly votes for this bill in this legislative session.

Go to topS09638 Text:

 STATE OF NEW YORK
 ________________________________________________________________________

 9638

 IN SENATE

 March 31, 2026
 ___________

 Introduced by Sen. FAHY -- read twice and ordered printed, and when
 printed to be committed to the Committee on Health

 AN ACT to amend the social services law, in relation to payment for
 rapid whole genome sequencing

 The People of the State of New York, represented in Senate and Assem-
 bly, do enact as follows:

 1 Section 1. The social services law is amended by adding a new section
 2 367-z to read as follows:
 3 § 367-z. Payment for rapid whole genome sequencing. 1. For purposes of
 4 this section, "rapid whole genome sequencing" means an investigation of
 5 the entire human genome, including coding and non-coding regions and
 6 mitochondrial deoxyribonucleic acid, to identify disease-causing genetic
 7 changes that returns the preliminary positive results within seven days
 8 and final results within fifteen days from the date of receipt of the
 9 sample by the lab performing the test. "Rapid whole genome sequencing"
 10 includes patient-only whole genome sequencing and duo and trio whole
 11 genome sequencing of the patient and biological parent or parents.
 12 2. One year after the effective date of this section, and subject to
 13 any required approval of the Centers for Medicare and Medicaid Services,
 14 the commissioner shall authorize the payment of medical assistance funds
 15 for rapid whole genome sequencing when the beneficiary:
 16 (a) is under twenty-one years of age;
 17 (b) has a complex or acute illness of unknown etiology, that is not
 18 confirmed to be caused by an environmental exposure, toxic ingestion,
 19 infection with normal response to therapy, or trauma; and
 20 (c) is receiving hospital services in an intensive care unit or other
 21 high acuity care unit within a hospital.
 22 3. Payment provided pursuant to this section may be subject to appli-
 23 cable evidence-based medical necessity criteria that shall be based on
 24 all of the following:
 25 (a) the patient has symptoms that suggest a broad differential diagno-
 26 sis that would require an evaluation by multiple genetic tests if rapid
 27 whole genome sequencing is not performed;

 EXPLANATION--Matter in italics (underscored) is new; matter in brackets
 [ ] is old law to be omitted.
 LBD05345-01-5

 S. 9638 2

 1 (b) the patient's treating healthcare provider has determined that
 2 timely identification of a molecular diagnosis is necessary to guide
 3 clinical decision-making and testing results may guide the treatment or
 4 management of the patient's condition; and
 5 (c) the patient has a complex or acute illness of unknown etiology
 6 including at least one of the following conditions:
 7 (i) congenital anomalies involving at least two organ systems or
 8 complex/multiple congenital anomalies in one organ system;
 9 (ii) specific organ malformations highly suggestive of a genetic
 10 etiology;
 11 (iii) abnormal laboratory tests or abnormal chemistry profiles
 12 suggesting the presence of a genetic disease, complex metabolic disor-
 13 der, or inborn error of metabolism;
 14 (iv) refractory or severe hypoglycemia or hyperglycemia;
 15 (v) abnormal response to therapy related to an underlying medical
 16 condition affecting vital organs or bodily systems;
 17 (vi) severe muscle weakness, rigidity, or spasticity;
 18 (vii) refractory seizures;
 19 (viii) a high-risk stratification on evaluation for a brief resolved
 20 unexplained event with any of the following:
 21 (A) a recurrent event without respiratory infection;
 22 (B) a recurrent witnessed seizure-like event; or
 23 (C) a recurrent cardiopulmonary resuscitation ev