Res. No. 1191
Resolution calling upon the New York State legislature to pass, and the Governor to sign, A.1977/S.3805, in relation to Medicaid and Medicare coverage for Rapid Whole Genome Sequencing for patients under 21 with an acute illness of unknown etiology.
By Council Member Menin
Whereas, Rapid Whole Genome sequencing (rWGS) refers to a fast diagnostic test that analyzes an individual’s entire genome to identify genetic causes for medical conditions; and
Whereas, rWGS can help diagnose chromosomal abnormalities, neurological and cardiovascular disorders, immune conditions, organ-specific diseases, and other rare syndromes; and
Whereas, rWGS can return a diagnostic result within 10 days, compared to an average of 5-7 years without genome sequencing; and
Whereas, The benefits of rWGS include more accurate clinical diagnoses, immediate changes in clinical management to improve patient quality of life, better care planning, fewer hospital admissions, and prevention of severe complications; and
Whereas, Most genetic conditions are diagnosed in childhood; and
Whereas, Delays in diagnoses often lead to unnecessary treatments and tests and multiple hospital admissions, driving up health care system utilization and costs; and
Whereas, A study from the National Institutes of Health’s National Center for Advancing Translational Sciences found that health care costs for people with a rare disease or genetic condition can be up to 5 times higher than for those without; and
Whereas, According to the New York State Department of Health, in 2023, 24.9% of children under 18 had a special health care need, of which 12.3% had a genetic or inherited condition; and
Whereas, Children with genetic conditions and rare diseases disproportionately rely on public payer insurance; and
Whereas, About 3 in 10 of all New York State Medicaid enrollees are children; and
Whereas, A.1977, sponsored by Assembly Member Amy Paulin, and pending in the State Assembly, and companion bill S.3805, sponsored by State Senator Brad Hoylman-Sigal, and pending in the State Senate, would amend the Social Services Law to require the Medicaid commissioner to authorize the use Medicare and Medicaid funds for rWGS for patients under 21 who have an acute illness of unknown etiology and are receiving hospital services in an intensive care unit, subject to approval by the Centers for Medicare and Medicaid; and
Whereas, Other states’ Medicaid programs, including California and Florida, have added rWGS coverage with positive results in cost savings and improved medical care and patient quality of life; and
Whereas, An analysis undertaken by the Florida State House of Representatives related to costs associated with potential rWGS coverage under Medicaid estimated cost savings to the state Medicaid program of over $3.7 million, equal to nearly $3 million in net savings after the costs of tests; and
Whereas, Similarly, Project Baby Bear, a California state-funded pilot which provided rWGS for infants hospitalized in Intensive Care Units (ICUs), resulted in over $2.5 million saved in medical costs reduced hospital stays by up to 590 hospital days, and led to major changes in medical management for about one third of infants; and
Whereas, According to the Kaiser Family Foundation, in Fiscal Year 2024, New York State spent over $96 billion on Medicaid; of which over $18 billion was Fee-for-Service Acute Care, which includes inpatient and intensive care, lab work, and hospital and physician visits; and
Whereas, As of October 2025, there were almost 4 million Medicaid enrollees in New York City, comprising 57% of the State total; and
Whereas, New York City’s share of Medicaid for Fiscal Year 2026 is currently budgeted at $6.5 billion; and
Whereas, A.1977/S.3805 would increase access to rWGS for patients who rely on Medicare and Medicaid; and
Whereas, Increased use of rWGS has the potential to save the State and City a significant amount in Medicare and Medicaid costs while improving the quality of life for pediatric patients with genetic conditions; now, therefore, be it
Resolved, That the Council of the City of New York calls on the New York State legislature to pass, and the Governor to sign, A.1977/S.3805, in relation to Medicaid and Medicare coverage for Rapid Whole Genome Sequencing for patients under 21 with an acute illness of unknown etiology.
PR
12/12/205 2:22pm
LS 20667