News Releases

News Release - Manitoba

May 23, 2019


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All Newborns to be Tested for Rare Genetic Diseases: Friesen

The Manitoba Newborn Screening Program will expand its screening for all newborn children to include severe combined immune deficiency (SCID), a group of rare genetic diseases affecting a child’s immune system, Health, Seniors and Active Living Minister Cameron Friesen announced today.

“The expansion of the program is expected to ensure children get the care they need as soon as possible,” said Friesen.  “Newborn screening looks for easily detectable and preventable diseases linked to inherited and non-heritable disorders.  Many of these conditions are very uncommon or rare.  Early detection and treatment can help prevent irreversible impacts to a child.”

SCID affects approximately one in 60,000 newborns worldwide.  However, it is considerably more common in Manitoba, with approximately one of 16,000 newborns born with SCID.  Approximately half of all SCID cases in the province occur in the northern Cree and Mennonite populations, often with additional mutations that are Manitoba-specific.

The SCID genetic disease group can lead to early and severe infections.  SCID-positive children are at a high risk of poor health outcomes if they are immunized using live vaccines, such as tuberculosis (BCG) or measles/mumps/rubella.  If not treated with a bone marrow transplant, children are not expected to live beyond two years of age.

The expanded screening program will provide more information to parents using a targeted gene-detection method developed in Manitoba.  Early detection can help families become aware of a possible genetic issue and improve outcomes for patients and their families.  The program is set to start screening in early 2020, the minister said.

“This is such an important advance in the care of Manitoba children with SCID,” said Dr. Cheryl Rockman-Greenberg, a clinician scientist with the Children’s Hospital Research Institute of Manitoba and a distinguished professor with the University of Manitoba.  “Manitoba children with SCID detected at birth and treated early before any symptoms develop will now have greatly improved health outcomes and quality of life not possible before.”

The expanded program will cost approximately $440,000 in annual operating and staffing costs to screen newborns for SCID, along with one-time startup costs of $55,000, Friesen said.  He added these costs are expected to be offset by savings seen from reduced costs for treatment.

In Manitoba, every newborn can be checked for uncommon or rare diseases through the Manitoba Newborn Screening Program.  The universal hearing screening program was implemented in 2016, allowing early detection of congenital hearing loss in children the opportunity to develop strong cognitive, speech-processing and learning skills.

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