‘Why are we not doing it?’: father runs for full-scale newborn CMV screening

Hey there, time traveller!
This article was published 01/02/2023 (447 days ago), so information in it may no longer be current.

Congenital CMV infections can cause hearing loss, vision loss and developmental delays in infants. Manitoba, unlike its neighbouring provinces, doesn’t screen every newborn for it.

A local father preparing a 12-day marathon charity solo run across the province hopes to change that.

Rob Tétrault’s son, now 15, was born with congenital cytomegalovirus (CMV). After treatment, he’s grown to be a healthy teenager.

Not every child is so lucky, and that is why Tétrault and his wife co-founded the Canadian CMV Foundation, with the goal of funding research and supporting parents.

Because Manitoba currently only screens some children for CMV, but not all, parents are unknowingly passing the virus — which is asymptomatic in healthy adults, and typically becomes harmful to infants who are infected before they are born, during birth or through breast milk — on to their children. Without treatment, as babies infected with congenital CMV appear healthy at birth, they develop symptoms over time.

One in 200 infants in Canada are infected with CMV during pregnancy, and one in five of those will have a permanent disability directly caused by the virus. Early treatment with antiviral medication has to be done early — Canadian CMV Foundation recommends within 21 days after birth.

Currently, Manitoba only tests babies with CMV-related hearing loss at birth, leaving out a large number who will later develop serious symptoms, advocates say.

“We’re choosing not to identify kids that are going to be sick, and that’s unacceptable,” Tétrault said Thursday morning in Winnipeg.

“We know we can identify these kids, and we know that if we identify them, we can treat them. And we know that if we can treat them, they have a better outcome, and we know that all of this is cost-effective… so why are we not doing it?”

Tétrault’s charity run will take him to the Ontario border from the Saskatchewan border May 12-24. Both those provinces screen all babies at birth for congenital CMV.

Sponsors already on board include pharma giant Moderna Inc.; donations will go to funding CMV research.

As to why Manitoba has chosen to not make its screening universal, Tétrault blames “political jockeying.”

Bill 214 (Universal Newborn Screening Amendment Act) would amend the current protocol to include all newborns in Manitoba. It was introduced by NDP MLA and health critic Uzoma Asagwara in 2020, but did not make it past a first reading.

“I believe that because it’s not their bill, the (governing) Conservatives are choosing to block this bill, and that’s incredibly frustrating,” Tétrault said. “As a parent… who doesn’t care about politics… it’s frustrating that they’re putting that ahead of the lives of newborn babies.”

When asked if amending Bill 214 is something Health Minister Audrey Gordon would consider, a provincial spokesperson said in an email Thursday: “Our government takes the advice of public health experts.”

A second spokesperson later reiterated any newborn that does not pass second-stage hearing screening after birth can be screened for congenital CMV.

Asagwara called it an example of the Tories putting “their political agenda ahead of the health needs of Manitobans.”

“The PCs refused to support it, they blocked the bill,” Asagwara said. “And that was incredibly disappointing, because this isn’t a political issue, this is not a partisan issue… This should have been a very easy bill to support unanimously in the house and to pass.”

Should the NDP be successful in the next provincial election (coming on or before Oct. 3), Asagwara said, universal screening would be brought into law.

“The benefit is obvious in terms of it improves the health of newborns, it’s also a cost-saving measure, a cost-saving service in our health-care system. (Tétrault) should not have to be organizing a run to draw more attention to this very important issue.”

Most Canadian provinces don’t screen for congenital CMV at all.

Tétrault said Manitoba was one of the first in Canada to implement targeted screening protocols, and the contrast in response then, and now, is significant to him.

“I think the whole issue of, ‘Yeah, but if we screen, we’re going to have to figure out a way to treat all these babies out and we’re not ready for that,’ is an embarrassing statement about our health-care system,” he said.

malak.abas@freepress.mb.ca