Resolution 2014.04 National Standard for Newborn Screening Including Screening for Severe Combined Immunodeficiency

August 15, 2014

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Resolution 2014.04 National Standard for Newborn Screening Including Screening for Severe Combined Immunodeficiency

Whereas, Canada does not have a national standard for newborn screening; and

Whereas, The implementation of a national standard for newborn screening would ensure the identification of rare disorders in all newborns; and

Whereas, Ontario is currently the only province that screens newborns for severe combined immunodeficiency (SCID), a genetic disorder that is detectable only with screening; therefore, be it

Resolved, That national council of The Catholic Women’s League of Canada, in 94th annual national convention assembled, urge the federal government to implement a national standard for newborn screening including screening for SCID; and, be it further

Resolved, That national council of The Catholic Women’s League of Canada, in 94th annual national convention assembled, urge provincial councils to become aware of newborn screening including screening for SCID as it pertains to their province/territory, and to act on it, as deemed necessary/prudent.

 

BRIEF:          National Standard for Newborn Screening Including Screening for Severe Combined Immunodeficiency

“Canada does not have a national benchmark for newborn screening” (Andreatta). “Every Canadian should have access to the same high-quality health care no matter where they live,” Duncan said. “At this point the biggest obstacle we face in establishing universal screening standards is the lack of leadership from the federal government” (Duncan).

“Newborn screening varies so much in Canada, observers say, because unlike in other countries there is no guidance from a federal authority. Provinces decide what tests to administer based on a variety of factors, including costs and the likelihood of their residents being afflicted” (Andreatta).

“While there is no international consensus on an ideal number of tests, the [Canadian] Organization for Rare Disorders recommends the creation of a national list of diseases to be screened” (ibid). “… a nationwide patchwork of testing programs leaves some newborns with rare disorders vulnerable to going undetected before damage is done” (ibid). “Newborn screening will detect this problem early before complications develop, and allow for prompt life-saving interventions. It will no doubt save many lives and prevent suffering of children” (Newborn Screening Ontario).

“Newborn screening is also a smart, cost-effective investment of public dollars,” Kyriacopoulos added. For example, a study found that the cost to Medicaid of treating a baby with severe combined immunodeficiency (SCID) can exceed $2 million. However, if screened, diagnosed, and treated early, a bone marrow transplant that costs approximately $100,000 can cure the baby” (American Association for Clinical Chemistry).

“…Ontario is the first jurisdiction in Canada to test every infant born in the province for Severe Combined [Immunodeficiency] (SCID), a deadly disorder previously known as ‘Bubble Boy Disease’” (Newborn Screening Ontario).

“SCID is a genetic disorder that is only detectable with screening. There are usually no clues at birth that a baby has SCID, although these babies are prone to recurrent, life-threatening infections in the first 6 months of life because of faulty immune systems. They eventually die from complications. Currently, many infants with SCID do not receive a diagnosis until it is too late for treatment to be effective” (Newborn Screening Ontario).

“On January 21, 2010, the Advisory Committee on Heritable Disorders in Newborns and Children voted unanimously to add screening for …SCID… to the core panel for universal screening of all newborns in the United States. On May 21, 2010, Kathleen Sebelius, Secretary of Health and Services announced the addition of …SCID to the core panel of 29 genetic disorders as part of her recommendation to adopt the national Recommended Uniform Screening Panel. SCID is the first nominated condition to be added to the core panel of disorders” (CI Society).

The Newborn Screening in Canada Status Report shows disparity across Canada, with very few universal screenings required by law (Canadian Organization for Rare Disorders). Although the public health system is a shared jurisdiction, a national screening program is needed on the basis of equal access, therefore upholding the basic right of equality for all.

 

Works Cited

  1. American Association for Clinical Chemistry. “Newborn Screening at a Crossroads.”  Clinical Laboratory News. 39(8). Aug 2013. n. pag. Web. 18 Mar 2014. http://www.aacc.org/publications/cln/2013/august/Pages/Newborn-Screening.aspx
  2. Andreatta, David. “Canada has no national standard for newborn screening.  Here’s why it should.” The Globe and Mail. 25 Aug. 2013. n. pag. Web. 1 Oct. 2013. http://www.theglobeandmail.com/life/health-and-fitness/health/canada-has-no-national-standard-for-newborn-screening-heres-why-it-should/article13940675/
  3. Canadian Immunodeficiency Society (CI Society) n. pag. Web. 18 Mar. 2014. http://www.scid.net/
  4. Canadian Organization for Rare Disorders.  “Newborn Screening in Canada Status Report” 1-3. Print. 21 Jun. 2013.
  5. Newborn Screening Ontario. “A first in Canada, Ontario newborns to be screened for fatal but curable genetic disorder. Screening for Severe Combined Immune Deficiency (SCID) expected to save lives.” 20 Aug. 2013 n. pag. Web. 18 Mar. 2014. http://www.newbornscreening.on.ca/data/1/rec_docs/554_SCID_Press_Release_FINAL_V2.pdf

 

Action Plan

  1. Write the prime minister, minister of health and local members of parliament urging the federal government to implement a national standard for newborn screening including screening for severe combined immunodeficiency.
  2. Write to provincial and territorial governments urging them to include severe combined immunodeficiency  in provincial and territorial newborn screening programs
  3. Educate members on the need for a national standard for newborn screening and the importance of including severe combined immunodeficiency in newborn screening.
  4. Monitor governments’ responses to the requests contained in the resolution.

 

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