SASKATOON – There are renewed calls for the Saskatchewan government to screen newborns for sickle cell disease. An estimated one in every 2,500 babies will be born with the disorder, that at times can cause unimaginable pain.
According to health officials, while the disorder is still rare, the number of cases in Saskatchewan and the country are increasing as the immigrant population increases. That’s because those most likely to be afflicted by sickle cell disease are African American, Mediterranean or Asian.
While people with the sickle cell trait don’t necessarily have the disease, they can pass it on to their children. Saskatchewan is one of very few provinces where universal screening of babies isn’t mandated.
“Saskatchewan is actually one of four provinces in Canada that currently does not have newborn screening for sickle cell disease,” said Dr. Roona Sinha, a pediatric hematologist for the Saskatoon Health Region (SHR).
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As the only pediatric hematologist in the province, Sinha treats all patients under the age of 17. She currently has a case load of 20 patients.
Children who receive a delayed diagnosis at age one or two can experience excruciating pain as a result of the disease. Since it causes red blood cells to form a sickle shape, which then get stuck in the blood flow, oxygen doesn’t travel to all essential organs.
Screening for the disease would be simple, said Sinha. Lab techs would just have to test the same blood spot collected from a newborn that’s analyzed for a plethora of other diseases and disorders within 72 hours of birth.
“The earlier you’re able to know that someone has the disease, the better you can do with preventative medicine.”
The goal for her patients is to never have to be admitted to hospital which, for some patients, can be many times annually if the rare blood disorder isn’t managed properly.
“We know that for the average sickle cell patient, the lifetime cost of having sickle cell is about $9 million, and so that includes admissions to hospital, that includes their medications, it includes what they lose by not being productive members of society,” added Sinha.
“We know that we can decrease that cost immensely by doing preventative care.”
According to Patrick O’Byrne, executive director of the Saskatchewan Disease Control Laboratory, newborns in the province are screened for 31 diseases and disorders.
The same test is used across the country to identify babies who may have treatable diseased or disorders, but that number ranges from 13 to 49 depending on where you live, prompting deputy ministers of health to want to deal with the variability.
“They have tasked a working group to develop standards for the Canadian health care system for the implementation of newborn screening and we are awaiting our final report which will help guide our strategy into the future for newborn screening,” said O’Bryne.
The final report is anticipated in early 2016 with recommendations likely handed down to deputy ministers by spring.
“Based on what’s in the final report, we’ll be adapting our testing menu to fit with the national standards.”
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