In the near future, I plan to introduce legislation that would provide Medical Assistance (MA) coverage for rapid whole genome sequencing (rWGS) for critically ill infants up to one year of age who are admitted to an inpatient intensive care unit with a complex illness of unknown etiology.  
 
The Department of Human Services would make payment for rWGS if the MA beneficiary meets the eligibility criteria for reimbursement as set forth in the bill through retroactive authorization. DHS shall make payment for the testing as a fee-for-service reimbursement for MA beneficiaries enrolled in the fee-for-service program. For MA beneficiaries enrolled in HealthChoices, DHS shall make separate payment for the testing to the medical assistance managed care organizations and the separate department payment to the medical assistance managed care organizations for the testing shall be provided to the medical assistance provider, at a minimum, at the same fee-for-service delivery system rate.  

Reimbursement for rWGS would be limited to infants that meet specific criteria in the bill. The number of infants that would qualify for rWGS would be minimal since the criteria for testing in the legislation would include only those infants that:  

• Are critically ill and up to one year of age
• Are admitted to an inpatient ICU with a complex illness of unknown etiology
• Meet a list of medically necessary criteria to be tested as set forth in the legislation

Early diagnosis for NICU infants with genetic disorders is sound medicine in that it:

• Shortens the diagnostic odyssey that can be agonizing for families
• Allows for early treatment which results in better outcomes
• Results in fewer inpatient hospital days which presents a financial benefit for MA, patients and families

Three clinical studies have shown clinical and cost effectiveness of rWGS for critically ill infants. The studies conducted in California, Michigan and Florida consistently demonstrated aggregate and per person cost savings as compared to the standard of care. Rapid whole genome sequencing yields twice as many diagnoses than usual care in the ICU. There is significant value for both patients and Medicaid if the program provides coverage and reimbursement of rWGS in high acuity clinical settings.
 
Please join me in supporting this important piece of legislation.