All 50 states to require screening newborns for ‘bubble boy’ disease

  • Dec. 20, 2018 3:31 p.m.

The families of every child born in the U.S. will soon know whether their newborns are at risk of having a life-threatening immune disorder sometimes known as “bubble boy” disease, as every state now requires screening for the condition.

The Towson-based Immune Deficiency Foundation has spent the last decade pushing for universal screening for severe combined immunodeficiency. Louisiana became the final state to require newborns be screened for severe combined immunodeficiency this week.

Maryland, the 37th state to approve testing, has required screening since 2016.

While a separate diagnosis is required to confirm a child has SCID, John Boyle, president of the Immune Deficiency Foundation, said screenings are a step toward speedy diagnoses and treatment.

“This is literally one of those screening areas where it would save lives,” Boyle said.

Children with SCID are vulnerable to life-threatening infections because they lack the T-cells and antibody immunity that help fight infections viruses, bacteria and fungi. Babies with SCID often appear healthy, and in the past many families would not find out a child had the disease until their infant was seriously ill.

“Families are not going to see that in the future,” Boyle said. “That is a thing of the past.”

SCID can be treated with bone marrow transplants, enzyme replacement or gene therapy. Treating the condition before infections occur is vital to patients’ longevity.

The condition is also known as “bubble boy” disease, named for David Vetter, a child in Texas who had SCID and spent his life in protected enclosures to prevent infection before he died at age 12 in 1984.

In 2008, Wisconsin became the first state to screen for SCID, and the U.S. Department of Health and Human Services began recommending SCID tests be included in health screenings for newborns in 2010.

The Immune Deficiency Foundation and partner organizations were part of a grassroots effort to incorporate the testing state-by-state.

The Immune Deficiency Foundation will now turn its attention to ensuring quick diagnoses and treatment are available to infants who may have SCID, particularly for people who live far from major medical centers and those whose insurance does not cover specialist visits, Boyle said.

“Everyone is going to attempt to do all that they can seeing that there is a baby with a life-threatening condition here, but days matter, weeks matter,” Boyle said. “Making sure that happens as quick as possible and speeding up time to accurate diagnosis and treatment now becomes the goal.”

Get local stories you won't find anywhere else right to your inbox.
Sign up here

Just Posted

Government announces 79 new COVID-19 cases in Alberta, 2 in Red Deer

There are 79 new confirmed COVID-19 cases in Alberta, bringing the provincial… Continue reading

A message from the Advocate publisher

In good times and bad, The Red Deer Advocate has been here… Continue reading

Red Deer hospital bracing for COVID-19 impact

“We’re all worried about what’s coming, but I think we feel confident”

WATCH: COVID-19 doesn’t stop Red Deer Public Library from telling stories

Deb Isbister has been reading stories to children for more than 20… Continue reading

Alberta Health Services provides COVID-19 prevention tips

Alberta Health Services has a number of recommendations for people amid the… Continue reading

Alberta government website has latest COVID-19 statistics

Red Deer Advocate readers can stay up to date on the COVID-19… Continue reading

I am still facing that existential angst

Stir crazy. I looked the phrase up, just for fun. “Restless or… Continue reading

Red Deer College adapting and adjusting to COVID-19

I have worked in post-secondary education for more than 30 years, and… Continue reading

Families urge action to get Canadians home from cruise ship stuck off Panama

1,243 passengers and 586 crew on board and more tests are being done every day

Saskatchewan cabinet Minister deletes ‘pray and repent’ tweet over COVID-19

REGINA — A Saskatchewan cabinet minister who tweeted an Old Testament passage… Continue reading

Ontario allows youth to remain in care after passing cut-off age during pandemic

TORONTO — Youth in Ontario’s child welfare system who pass the cut-off… Continue reading

Canada could face legal trouble over refugee deportations: advocates

Deputy Prime Minister Freeland holding ‘urgent’ discussions with U.S. officials

Most Read