New Form of Genetic Testing for Infants Earns Medicaid Coverage in Michigan

Rapid whole genome sequencing can decrease hospital stays for critically ill newborns

Michigan is the latest state to offer Medicaid coverage for genome sequencing for certain critically ill babies, and forward-looking hospitals should consider offering such precision medicine testing in infants now to capitalize on this increasingly recognized form of treatment.

Rapid whole genome sequencing (rWGS) is a method of genetic testing that is used for infants who have critical illnesses. It analyzes over 90% of an infant’s genome in high detail, identifying rare genetic conditions that are difficult to diagnose.

“Genetic disorders are a leading contributor to mortality in the neonatal ICU and PICU in the United States,” researchers from Rady Children’s Hospital and University of California San Diego wrote in Pediatric Critical Care Medicine. “Although individually rare, there are over 6,200 single-gene diseases, which may preclude a genetic diagnosis prior to ICU admission.”

Michigan’s recent decision to offer Medicaid coverage for rWGS testing for infants coincides with a statewide initiative to offer rWGS to critically ill babies and children. This initiative is being led by the Michigan Health and Hospital Association and has been dubbed Project Baby Deer.

The hospital association identifies four key ways that Baby Deer can enhance clinical management of young patients:

  1. Initiating life-saving treatments
  2. Avoiding unnecessary tests and procedures
  3. Shortening hospital stays
  4. Helping families with treatment decision-making

California is another state that offers coverage for rWGS, as the State Assembly secured $3 million in funding earlier this year for critically ill infants covered by California’s Medicaid program.

Some private insurers also cover rWGS.

Rapid Whole Genome Sequencing is Leading-Edge Technology

The use of rWGS in diagnosing critically ill babies is new, with the results of an early pilot study by Rady Children’s Hospital-San Diego released last year. This pilot study, named Project Baby Bear, tested 178 critically ill babies, resulting in a diagnosis for 43% of these infants and causing changes in treatments for over 30% of them.

“Among high-risk infants with rare, genetically determined diseases, time-to-treatment is crucial,” said Stephen Kingsmore, MD, DSc, President and CEO at Rady Children’s Institute for Genomic Medicine (RCIGM). “Project Baby Bear significantly shortened the time needed to accurately diagnose and optimally treat these critically ill children.”

This pilot study resulted in an estimated 513 fewer hospital stays, leading to a reduction in healthcare spending of about $2.5 million. “The economic data from Project Baby Bear showed that in addition to life-changing health benefits, there are cost savings in getting a quick diagnosis from a single, comprehensive test,” said David Dimmock, MD, RCIGM Senior Medical Director. “Doctors were able to avoid additional testing, ineffective treatments, and lengthy hospitalizations that would have resulted in greater pain and medical spending.”

Baby Bear Success Spreads to Florida

The results of the Baby Bear initiative quickly led to other hospitals pursuing similar programs. Nicklaus Children’s Hospital in Miami began its Project Baby Manatee project in 2020, collaborating with RCIGM to ensure the project’s success. Early results from Baby Manatee showed impacts similar to Baby Bear.

“As one of the first hospitals offering this level of personalized medicine, Project Baby Manatee has elevated the standard of care for testing of critically ill infants and children suffering unknown illnesses in the hospital’s intensive care units or outpatient clinics,” said Balagangadhar Totapally, MD, Director of the Division of Critical Care Medicine and Medical Director of the Pediatric Intensive Care Unit at Nicklaus Children’s Hospital.

Hospital administrators and NICU directors that want to realize improved diagnostics and treatments of their critically ill babies should look at funding for rWGS. This cutting-edge precision medicine technology has the ability to significantly benefit hospitals that become early adopters of rWGS in their NICUs.

—Caleb Williams

Related Information:

Rapid Whole Genome Sequencing Has Clinical Utility in Children in the PICU

Rady Children’s Shows Genomic Sequencing for Infants in Intensive Care Yields Life-Changing Benefits and Medical Cost Savings

Stephen Kingsmore, MD, DSc

David Dimmock, MD

Nicklaus Children’s Hospital

Project Baby Manatee

Balagangadhar Totapally, MD

Michigan Department of Health and Human Services: Bulletin Number MSA 21-33

Michigan Health and Hospital Association: Welcome to Project Baby Deer

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