Amani’s findings, the thought of her sister, and family inspired her to establish national, non-partisan, not-for-profit organization that advocates for the prevention of adverse drug reactions – Adverse Drug Reaction Canada.
When hit with a minor headache, it is quite common to purchase an over-the-counter medication of a trusted pharmaceutical brand. We mundanely pop a pill and continue with our day. Such was not the case for Amani Kaur Saini’s younger sister, who, in 2010, faced an adverse drug reaction (ADR) to a sample of an over-the-counter cold and sinus pill her doctor prescribed to take for her common cold while visiting the clinic. As the event took a nearly fatal turn, her sister spent three weeks at Vancouver General Hospital fighting for her life.
An ADR, often considered a form of toxicity, is a dangerous allergic reaction to a drug. There are an estimated 200,000 severe ADRs in Canada each year, though it is estimated that 95 per cent of ADRs are not reported. Having experienced an ADR so closely, Amani became deeply interested in health policy and began researching on the issue. Divulging further into the statistics, she learned that ADRs kill up to 22,000 Canadians per year, with over 5,000 of these cases being of children. “This was a profoundly staggering number. I just couldn’t get it out of my head,” shares Amani.
Amani’s findings, the thought of her sister, and family inspired her to establish a national, non-partisan, not-for-profit organization that advocates for the prevention of adverse drug reactions – Adverse Drug Reaction Canada. Born and raised in British Columbia, Amani holds a Master of Public Administration degree from Dalhousie University in Halifax, Nova Scotia, and a bachelor’s degree in Political Science from the University of British Columbia (UBC) in Vancouver.
Before founding ADR Canada, Amani spoke to professors and researchers both at UBC and around the world, through which she found that ADRs can be caused by a gene variant and genetic screening would be able to determine whether or not one carries a gene variant that would make them allergic to a certain drug.
Just as South Asians are prone to diseases such as diabetes, particular ethnicities are more likely to have specific allergies to certain drugs. Although genetic testing for drug allergies is prevalent in some countries, Canada does not make the list. Consider how relatively simple it is to have a blood test done in Canada.
Amani’s organization is advocating for the implementation of a parallel procedure for genetic testing, where patients are asked if they would like a genetic test before taking a new drug, be it non-prescribed. Such a process could indeed relieve the government financially, details Amani, “Genetic screening could cost around $100 per person. If an ADR is prevented, an abundance of medical costs are saved for the BC Health Care System. ADRs cost Canada between $13.7 and $17.7 billion per year.”
In fact, Amani accounts that her sister, despite having survived the ADR, still faces impacts on her quality of life, as she must make regular visits to eye specialists and purchase expensive eye drops – all from pocket.
The stakeholders are many in this situation, but Amani holds that the first step should be taken by the federal government. Firstly, a national database should be created where health institutions mandatory report ADR cases and track which drugs are causing damage. Secondly, there is a dire need to support publicly-funded genetic screening, which would help to identify gene variants and would be given before a person takes a new drug.
This young leader’s efforts are certainly beginning to bear fruit. In 2016, Amani wrote a policy as a submission to the Canadian Science Policy Conference that called on provinces to test Canadians for gene variants. For this, she won the Canadian Science Policy Award of Excellence and received a tremendous amount of support, gaining recognition from the science community.
When asked about her future plans for the organization, Amani expresses that her ultimate goal is that there is no need for the organization to exist. While many diseases and conditions are still unpreventable, ADRs can potentially be prevented. Every patient is not the same; it’s time we stop giving drugs at random and make genetic information the grounds for drug prescription decisions. An inspiration for the community, Amani calls on those impacted by an ADR to connect with her and share their story as she stands at the forefront of stirring change in the lives of Canadians. If you have been impacted by an ADR, contact info@adrcanada.org. If you would like to donate to the organization, visit www.adrcanada.org.
Images: Courtesy Amani Saini, CAP Photographic Solutions