New State-Of-The-Art Testing Program means children will have best start in life OTTAWA, Nov. 2 - The McGuinty government is protecting Ontario's children by establishing a state-of-the-art screening program at The Children's Hospital of Eastern Ontario (CHEO), Health and Long-Term Care Minister George Smitherman announced today. "We are making tremendous progress to ensure children in Ontario are healthy and have the best possible start in life," Smitherman said. "CHEO will be a centre of excellence in newborn screening, with the most comprehensive program in the country. Working with the best technology available, it will identify infants with a wide range of disorders, so that they can get the treatment they need as soon as possible." The government will be investing $18 million - about $5 million to cover the one-time purchase technology, and about $13 million in ongoing annual funding. Smitherman also announced the addition of six new tests to the newborn screening program, building on the nineteen additional tests announced in September. Once this expansion is complete, Ontario will test for 27 rare genetic diseases including 20 inherited metabolic disorders (IMDs), four endocrine disorders, and three blood disorders. Ontario will be the only jurisdiction in Canada to test for blood disorders like sickle cell disease. "I am delighted that Ontario has taken the Canadian lead in implementing universal newborn screening for blood disorders like sickle cell disease," said Dr. Isaac Odame, Chair of the Hemoglobinopathy Group of Ontario at McMaster University Medical Centre. IMDs, blood and endocrine disorders are rare but they can cause serious health difficulties - such as developmental delays, brain damage and mental retardation - and in some cases even death. The expansion is based on advice from the Newborn Screening Subcommittee of the Ontario Advisory Committee on Genetics, whose final report is expected in December. "We commend the government for providing the tools to identify and treat newborns with these rare genetic disorders," said Dr. Ted Boadway, Executive Director of Health Policy with the Ontario Medical Association. "The expansion of the program will make Ontario a leader in newborn screening." CHEO's newborn screening program will be in operation by March 2006 with all the new tests for IMDs, blood and endocrine disorders being performed by the end of 2006. "We're thrilled to have been chosen as the host hospital for what will be the leading newborn screening program in Canada," said Gary Cardiff, CEO of CHEO. "We look forward to using our expertise and the latest technology available for the early detection of a wide range of potential health problems in newborns." Smitherman also announced new training opportunities with the endowment of two fellowships in newborn screening and the development of educational materials for the public and healthcare providers. In addition, a permanent advisory committee will be established to provide oversight and ongoing advice to the government on its newborn screening program. Dr. Joe Clarke, head of clinical metabolic genetics at The Hospital for Sick Children, will be the chair. The committee will look at improving the ordering and distribution of speciality foods for IMD patients, as well as whether a test for cystic fibrosis should be part of the newborn screening program. "I am very pleased to accept this invitation to be the founding chair of a permanent newborn screening advisory committee," said Dr. Joe Clarke, head of clinical metabolic genetics at The Hospital for Sick Children. "I'm also very happy that the government has moved so quickly to expand this program." The expansion of newborn screening is part of the McGuinty government's commitment to build a health care system that delivers on three priorities - keeping Ontarians healthy, reducing wait times and improving access to doctors and nurses. This news release, along with other media materials, such as matte stories and audio clips, on other subjects, are available on our website at: http://www.health.gov.on.ca under the News Media section. For more information on achievements in health care, visit: www.resultsontario.gov.on.ca. Version française disponible BACKGROUNDER ------------------------------------------------------------------------- MCGUINTY GOVERNMENT EXPANDS NEWBORN SCREENING PROGRAM The McGuinty government has selected the Children's Hospital of Eastern Ontario (CHEO) as the site for a state-of-the-art newborn screening program - which will be the most comprehensive one in the country. CHEO was selected after the government issued a letter of invitation to seven Ontario hospitals last August, inviting them to submit a proposal to host the province's newborn screening program. The new program at CHEO will feature: - Three tandem mass spectrometry machines to screen for inherited metabolic disorders (IMDs) - Screening for blood and endocrine disorders that will be performed using additional technologies such as automated enzyme assays, immunoassays, high-pressure liquid chromatography and/or electrophoresis. The McGuinty government is also adding six new tests to its newborn screening program. Ontario will test for 27 rare conditions once this expansion is complete and will be the only jurisdiction in Canada that tests for a wide range of IMDs as well as endocrine and blood disorders. Blood and Endocrine Disorders Tests for blood disorders include: - Sickle cell disease (Hb SS) - Thalassemia (Hb S/(Beta)Th) - Hb S/C disease. Sickle hemoglobin disorders are life-threatening inherited blood disorders characterized primarily by chronic anemia and periodic episodes of pain. It primarily affects babies of African, Spanish, Mediterranean, Middle Eastern and East Indian descent. Screening for these disorders will benefit babies by leading to penicillin treatment, which can reduce infant mortality by 84 per cent. Ontario already screens newborns for congenital hypothyroidism (CH). The new tests for endocrine disorders are: - Congenital adrenal hyperplasia - Biotinidase - Galactosemia Inherited Metabolic Disorders In September, the government expanded the testing for IMDs to 20 tests from one (PKU). The 20 tests fall under three categories: organic acid disorders (OAs), fatty acid oxidation disorders (FAODs) and amino acid disorders (AAs). Organic acid disorders (OAs) ---------------------------- Babies born with an organic acid disorder have a chemical imbalance in their body that can be toxic. Organic acids play an important role in the breakdown of fats, sugars and protein for the body's use and storage. Muscle wasting, seizures, developmental delays and even death can occur if untreated. These tests include: - Isovaleric acidemia (IVA) - Glutaric Acidemia type 1 (GA I) - 3-OH 3-CH3 glutaric aciduria (HMG) - Multiple carboxylase deficiency (MCD) - Methylmalonic acidemia (mutase deficiency) (MUT) - 3-Methylcrotonyl-CoA carboxylase deficiency (3MCC) - Methlymalonic acidemia (Cbl A,B) - Propionic acidemia (PROP) - (Beta)-Ketothiolase deficiency Fatty acid oxidation disorders (FAODs) -------------------------------------- Without treatment, children with a fatty acid oxidation disorder may experience periods of poor feeding, lack of energy, difficulty breathing, low blood glucose and vomiting. These episodes can become serious enough to lead to developmental delay, seizures, coma and even sudden death. These tests include: Medium-chain acyl-CoA dehydrogenase (MCAD) Very long-chain acyl-CoA dehydrogenase deficiency (VLCAD) Long-chain L-3-OH acyl-CoA dehydrogenase deficiency (LCHAD) Trifunctional protein deficiency (TFP) Carnitine uptake defect Amino acid disorders (AAs) -------------------------- Babies born with amino acid disorder cannot metabolize or process amino acids properly. The result is an amino acid and protein imbalance and build-up in the body. Early treatment helps prevent brain damage, mental retardation, coma, seizures, autistic-like disorders and even death. These tests include: - Maple syrup disease (MSUD) - Homocystinuria (due to CBS deficiency) (HCY) - Citrullinemia (CIT) - Argininosuccinic acidemia (ASA) - Tyrosinemia type I (TYR I) - Phenylketonuria (PKU) Cost ---- This announcement represents an $18 million investment. About $5 million will be allocated this year to cover one-time costs such as the purchase of Tandem MS and other screening technology. About $13 million in ongoing funding will be allocated to cover all of the costs related to the newborn screening program.For further information: Members of the media: David Spencer, Minister's Office, (416) 327-4320; Dan Strasbourg, Ministry of Health and Long-Term Care, (416) 314-6197; Members of the general public: (416) 327-4327, or 1-800-268-1154