Our advocacy priorities

ADR Canada advocates for two policies which will lead Canada on the path to preventing adverse drug reactions:

1. Establishing a national mandatory database to record and monitor all adverse drug reactions.

2. Establishing publicly funded genetic testing to identify gene variants in individuals that can lead to adverse drug reactions.

Establishing publicly funded genetic testing

The identification of harmful drug-gene combinations means that some ADRs can be entirely prevented. For example, it was discovered that the gene variant HLA-B*15:02 combined with the drug carbamazepine resulted in the allergic reaction toxic epidermal necrolysis (TEN) and Steven Johnson’s Syndrome (SJS), the less severe form of TEN.[1]  When Taiwan identified patients carrying the HLA-B*15:02 gene and had them avoid carbamazepine, it saw a significant reduction in SJS-TEN, preventing an estimated ten cases of these potentially life-threatening diseases.[2] In 2010, Taiwan, realizing the benefits associated with conducting genetic tests versus the costs of caring for SJS-TEN patients, began covering the cost of genetic tests as part of their national health insurance.[3] This action towards preventing ADRs can be taken towards high frequencies of ADR related genes in Canada and/or all drug gene combinations that have thus far been successfully identified.

Canadians should be tested to determine which gene variants they carry and if they carry a variant that could result in a negative reaction to a drug, then that trigger drug should be withheld. Thousands of lives could be saved and savings would be in the billions for Canada. Governments could give their citizens the option of having a genetic test; through the same manner in which patients receive blood tests today in each respective province. It will not be feasible to have 35 million Canadians tested at once and as health care is provincial jurisdiction, each province will differ in its approach and in prioritizing segments of their population. We must start somewhere and there are various population starting points jurisdictions could take:

Suggestion 1: Patients. As a patient is prescribed a new drug by a family doctor or anywhere in the health care system which they have never taken before, they should be given the option of taking a genetic test to determine which gene variants they carry and this knowledge should be used to guide the prescription of drugs.

Suggestion 2: Children born into a Canadian hospital. Parents should be asked if they would like to have their newborn tested and told about the consequences of ADRs. This would be a favourable stream to target as the child is already present in a health care facility, so this would reduce the future cost associated with visiting a family doctor and laboratory appointment. This would make the individual (and guardian) responsible for their own health and measures can be taken to ensure that they never suffer from an ADR from the time of birth to death.  

The governments of the United States and the United Kingdom have already shown incredible support for the increased use of genomics to guide health decisions. In 2015, President Obama announced $215 million to fund the creation of a national research program to sequence DNA to identify the genetic drivers of diseases.[4] In order to continue to be a world leader in health and technology, the Canadian government should take on a similar national approach. Provincial jurisdiction over health makes it acceptable for provinces to act solely on health-related initiatives. However, to effectively identify harmful drug-gene combinations, provinces need to work together to pool together their genetic information to explore correlations. Therefore, leadership from the federal government which fosters collaboration and brings together provinces and necessary partners would be conducive to detecting harmful drug-gene combinations.

Additionally, the federal government should reach out to international colleagues engaged in this pursuit. To identify the genetic variants for rare diseases, a larger sample size is required and therefore one country or even continent cannot combat rare diseases on its own and global cooperation is mandatory.  

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[1] Wen-Hung Chung et al., “Medical genetics: A marker for Stevens–Johnson syndrome,” Nature 428 (April 2004): 486.

[2] Pei Chen et al., “Carbamazepine-induced toxic effects and HLA-B*1502 screening in Taiwan,” New England Journal of Medicine 364 (2011): 1126–33.

[3] Ed Yong, “When a Genetic ID Card Is the Difference Between Life and Death,” The Atlantic, October 5, 2015, accessed August 9, 2016, http://www.theatlantic.com/science/archive/2015/10/southeastasiageneticdisorderstevensjohnsonsyndrome/408736/

[4] Matthew Herper, “Obama’s $215 Million DNA Sequencing Project Is A Great Idea,” Forbes, January 30, 2015, accessed August 18, 2016, http://www.forbes.com/sites/matthewherper/2015/01/30/obamas-precision-medicineinitiative-is-a-great-idea/#7b45486b1bf6