Washington State
House of Representatives
Office of Program Research
BILL
ANALYSIS
Health Care & Wellness Committee
HB 1444
Brief Description: Concerning rapid whole genome sequencing.
Sponsors: Representatives Thai, Corry, Stonier, Bergquist, Macri, Callan, Reeves, Davis, Reed, Parshley, Salahuddin, Hill and Tharinger.
Brief Summary of Bill
  • Requires that medical assistance programs provide coverage for rapid whole genome sequencing for enrollees who are up to one year of age and receiving inpatient hospital services in an intensive care unit or neonatal or high acuity pediatric care unit, if specific clinical conditions are met.
Hearing Date: 1/28/25
Staff: Chris Blake (786-7392).
Background:

A genome is a human's or other organism's complete set of genetic information.? The genome of a human contains between 20,000 and 25,000 genes.? Each gene carries information that determines a different trait, which is a feature or characteristic that may be inherited from the parents and passed down to the offspring.? The molecules that make up the genome and its genes are called deoxyribonucleic acid (DNA).? The genetic information in DNA is stored as a code made up of four building blocks, or bases.? A gene variant is a heritable change to the DNA sequence that makes up a gene.??Most gene variants have no impact on a person's health or development, but some gene variants result in genetic diseases.

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Using a method or technology called DNA sequencing, it is possible to determine whether a person has one or more variants in a single gene, multiple genes, or in the whole genome.? When testing for single gene variants and analysis of one or more gene sequences does not provide a diagnosis of disease, whole genome sequencing may be used to locate rare gene variants that may be the genetic cause of the condition.

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For medical assistance programs, the Health Care Authority covers rapid whole genome sequencing as a component of a diagnosis-related group for inpatient hospital services through the Prospective Payment System.? Under this method of reimbursement, payment to a hospital is made based on a predetermined, fixed amount.? The payment amount for a particular service is derived based on the classification system of that service.

Summary of Bill:

Beginning January 1, 2026, medical assistance programs administered by the Health Care Authority (Authority) must require provider payment for rapid whole genome sequencing for enrollees who are up to age one and meet certain criteria.? The payment is available if the infant is receiving inpatient hospital services in an intensive care unit or neonatal or high acuity pediatric care unit and:

  • the medical condition of the infant is not known and the enrollee's phenotype includes any of the following: ?(1) multiple congenital abnormalities affecting unrelated organ systems; (2) a specific abnormality affecting at least one organ system that is highly suggestive of a genetic condition; (3) epilepsy of an unexplained cause with early onset; (4) symptoms of a complex neurological condition; (5) cardiac diagnostic testing suggestive of possible channelopathies, arrhythmias, cardiomyopathies, myocarditis, or structural heart disease; (6) laboratory finding that suggests a genetic condition or inherited metabolic disorder; or (7) abnormal response to standard therapy;
  • alternative causes have been considered and determined not to be the cause of the illness; and
  • timely identification of a molecular diagnosis is needed for clinical decision making and results of rapid whole genome sequencing may aid in guiding the treatment of management of the condition.

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If the Authority or a managed care organization uses a capitated or bundled payment arrangement to reimburse health care providers for inpatient services, the reimbursement for rapid whole genome sequencing must be paid separately and in addition to the reimbursement under the capitated or bundled arrangement.

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The term "rapid whole genome sequencing" is defined as an ?investigation of the entire human genome to identify disease-causing genetic changes where a final report is delivered in less than 14 days.? Rapid whole genome sequencing includes the sequencing of only the patient's genome as well as the sequencing of the genome of the patient and the patient's biological parent or parents.? The term includes any analysis, interpretation, and data report resulting from the sequencing.

Appropriation: None.
Fiscal Note: Requested on January 22, 2025.
Effective Date: The bill takes effect 90 days after adjournment of the session in which the bill is passed.