Why should Canada follow Ontario’s newborn screening initiative?

In Advocacy, Market Access, Regulation & Government by André SingerLeave a Comment

Canada’s provincial and territorial disparities in many areas of health care are nothing new. When it comes to treating and preventing rare disorders that gap becomes even greater. Earlier this year at the World Orphan Drug Congress USA the representative from Health Canada has introduced the organization’s initiative to align the reimbursement policies of all provinces to enhance the access to orphan drugs by rare disease patients. Such bold move should also be followed by federal guidance towards standardizing newborns screening  practice to include many rare disorders that once detected early can be treated and cured, saving thousands of lives.Ontario is probably the most advanced province in terms of the number of screened diseases and the process itself. Besides reducing the vulnerability of rare disease newborns to have its diagnostic undetected before damage is done, the initiative is financially sustainable and cost-saving, since an earlier treatment is generally less expensive than having to deal with it when the disease is developed, compensating for the investment to implement the screening procedure for all newborns. However, there are many obstacles to a national system – funding, provincial pride, determining which diseases to screen, recognizing regional variations in population, among them. Transferring testing to regional screening centers could also make transporting the blood samples more complicated and costly. But the main issue to harmonize the system, according to the Canadian Organization for Rare Disorders, is the lack of federal leadership. The Director of Newborn Screening Ontario, Dr. Pranesh Chakraborty, will be speaking at the 2014 World Orphan Drug Congress USA about how these obstacles can be overcome to establish a coherent nationwide program and how the province’s experience can contribute to its implementation.

Canada’s provincial and territorial disparities in many areas of health care are nothing new. When it comes to treating and preventing rare disorders, that gap becomes even greater.

At the World Orphan Drug Congress USA earlier this year, David Lee from Health Canada introduced the agency’s initiative to align the reimbursement policies of all provinces and enhance access to orphan drugs.

Such a bold move should also be followed by federal guidance towards standardizing newborns screening  practice to include many rare disorders that once detected early can be treated and cured, saving thousands of lives.

Today we hear of Ontario’s move to conduct newborn screening in the province. Besides early intervention and giving children the opportunity to develop normally, the initiative is financially sustainable and saves cost. Prevention and even early treatment is almost if not always less expensive than having to deal with it when the disease is fully developed.

Could newborn screening be eventually a continent-wide policy? I guess it could be.

There are many obstacles to a national system – funding, provincial pride, determining which diseases to screen, recognizing regional variations in population, among them. Transferring testing to regional screening centers could also make transporting the blood samples more complicated and costly. But the main issue to harmonize the system, according to the Canadian Organization for Rare Disorders, is the lack of federal leadership.

The Director of Newborn Screening Ontario, Dr. Pranesh Chakraborty, will be speaking at the 2014 World Orphan Drug Congress USA about how these obstacles can be overcome to establish a coherent nationwide program and how the province’s experience can contribute to its implementation.

Find out more about how this topic will be tackled at the conference by clicking here.

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