Posted By Katarina Daniels – Dec. 9, 2013
This past August, Canadian news channels (CTV, CBC, Global) reported that Ontario had become the first province in Canada to start screening newborns for Severe Combined Immune Deficiency Syndrome or “bubble boy disease”. Since then, absolutely no news has followed – and no other provinces have followed suit.
What is bubble boy disease?
Severe Combined Immune Deficiency Syndrome (SCID), often referred to as “bubble boy disease,” is a disease that mutates children’s genes, compromising their immune systems, preventing them from fighting almost any form of infection. Left undetected, children typically die at a very young age. Currently, it affects approximately 1 in 100,000 children in North America, although this number may be higher due to the number of children who die without ever having been diagnosed with the disease.
As early as 1997, however, Duke University researchers discovered that nearly 90% of babies born with SCID could be cured if they receive a bone marrow transplant within the first three months of their lives. The problem then was recognizing the disease early enough such that this largely curable disease would not claim any more children’s lives.
In 2010, SCID was included in the Recommended Uniform Screening Panel in the United States, and since then, 17 states plus Puerto Rico started pilots or fully implemented screening for SCID, all using state resources.
This August, Ontario became the first Canadian province to offer screening to all infants born in Ontario as part of the Newborn Screening Ontario program. According to Ontario’s Ministry of Health, screening for SCID is expected to save up to 10 lives per year in the province.
Implications for the rest of Canada
Because the disease is so rare, doctors in the rest of Canada are more likely to diagnose infants with various infections as opposed to SCID, and by the time infants are finally tested for SCID, the chances of survival will have already been greatly decreased. According to Dr. Chakraborty, director of Newborn Screening Ontario, the life-saving bone marrow transplant is most safely conducted at the “earliest possible time in life,” ideally within the first three months.
Consequently, a dangerous and unjust divide exists between Ontario and the rest of Canada when it comes to newborn screening, essentially giving Ontario-born babies with SCID a better chance of survival.
Discrepancies in screening: Not a new phenomenon
In reality, however, this is not a new phenomenon, as health care falls under provincial jurisdiction. As a result, each province has its own newborn screening process for rare but treatable disorders.
According to the likelihood of early detection of these serious disorders, the best place to give birth is Manitoba, which tests for at least 40 disorders. Saskatchewan is close behind with testing of at least 30 disorders. Ontario and British Columbia come next, with 26 and 22 disorders tested, respectively. Alberta follows with testing for 17 disorders. For their part, the Atlantic provinces average testing for about a dozen disorders. And then there’s Quebec, testing for just three disorders at birth: tyrosinemia, phenylketonuria and congenital hypothyroidism. Along with Newfoundland & Labrador, Quebec is the only other province not currently screening for Cystic Fibrosis. Only two provinces screen for sickle-cell anemia, and Ontario is the only province testing for SCID.
The differences are striking, startling, and disconcerting. Essentially, it amounts to this: the right to life is unequal according to the province in which you are born. Parents who discover their child’s disorders too late are often furious when they find out that their child could have had significantly better chances of survival or at least improved living conditions had their child simply been born in another province. Yet there is no single movement across the country to standardize newborn screening.
Questioning health care policy
It has long been accepted that when it comes to state liability, courts are unwilling to question the policy decisions of government, particularly when it comes to spending limited resources (see for example Auton and Gosselin; van Boom & Pinna “Liability for Failure to Regulate Health and Safety Risks”). Furthermore, since health care comes under provincial jurisdiction, the argument of providing services equally (as seen in Eldridge for example) does not apply, as long as they are being provided equally within the same province.
However, if provincial governments are effectively limiting our right to life by selecting what disorders to screen and what not to screen, the longtime deferral to the legislature seems absurd. It would amount to the courts accepting that the legislature is, at times, sending infants to their death.
Furthermore, one could argue that the differences in screening across the provinces are arbitrary at best. The argument that the disorders are too rare to be tested cannot be upheld, as some of the disorders currently being tested are more rare than those not being tested. For example, Quebec does not currently test for Cystic Fibrosis, which affects one in 6,100 Quebeckers, whereas it does test for type I tyrosinemia, which affects one in 16,000 Quebeckers. In addition, the marginal costs of adding various disorders to the screening list when blood tests are already being ordered do not seem to justify the differences in newborn screening across provinces.
In sum, it appears as though all the ingredients of a Section 7 Charter violation are there: there has been an interference with the life interests of all newborn Canadians, depriving those with rare but treatable disorders currently tested for in other provinces from potentially lifesaving medical tests. Moreover, this interference is arbitrary in nature, and thus not in accordance with the principles of fundamental justice. In response to the problem of hospital waiting times in Canada, the court in Chaoulli stated: “It seems that governments have lost sight of the urgency of taking concrete action. The courts are therefore the last line of defence for citizens.” Perhaps it is time to see how far the courts are willing to go when it comes to infant screening – is a major class action in order?