Hello. Good morning, everyone. My name is Louise Kyle. I'm a law student here at the University of Ottawa and a member of Universities Allied for Essential Medicines, or UAEM.
In my spare time, I like to enjoy the great outdoors of our country with my partner and my family. In order to do that, I rely on an essential medicine that was developed here in Canada.
I'm here today to share my story with you. I have lived with type 1 diabetes for 25 years. By a simple accident of birth, I have been fortunate enough to have consistent access to insulin my entire life. In contrast, 99% of children with type 1 diabetes who are living in sub-Saharan Africa will die within six years of being diagnosed—six years.
An accident of birth separates me from a young man about my age who died last year in the United States rationing his insulin after being kicked off of his parents' insurance.
As you may know, insulin was discovered here in Canada by researchers at the University of Toronto, a publicly funded university. After witnessing countless people die from type 1 diabetes, Sir Frederick Banting wanted to see insulin mass-produced and distributed to those who need it. He chose to sell the patent rights to insulin for a symbolic $1 to the University of Toronto. He famously said, “Insulin does not belong to me; it belongs to the world.” That was in 1921. It's incredible to me that today this life-saving medicine is unavailable for one in two people who need it. Let me say that again—one in two.
As highlighted by previous witnesses, we need to continue to support research in the public domain. This provides the foundation on which all medicines will be discovered.
You heard Dr. Nickerson talk about the CIHR. The CIHR invests $1 billion per year in health research, and I pay taxes that go to those dollars. The Canadian government has the capacity, and I would say the responsibility, to ensure that medicines discovered with Canadian taxpayer dollars are available to those who need them.
Many medicines are developed in whole or in part with public funds at universities. Universities have goals that are socially oriented, yet they license promising research to private corporations on an exclusive basis. The problem is that these private corporations do not have the same goals as universities. As a result, private corporations are not making these publicly funded medicines available and accessible to all those who need them. Global access licensing would remove the exclusivity to a single corporation, and universities would therefore retain the right to license to other institutions.
Take sofosbuvir, for example. It cured over 90% of hepatitis C cases, but at a cost. One pill carried a price tag of $1000. That was $84,000 for a full course of treatment. This model does not reflect the goal of universities. Whereas a private pharmaceutical corporation is responsible to its shareholders, universities answer to the public.
Global access licensing aims to change the current dynamic. Global access licensing is non-exclusive licensing that allows multiple companies or institutions to access promising research. Global access licensing is a two-part solution. First, a federal funding agency like the CIHR requires a global access licensing provision in any funding that they provide; then, the university is able to license the research to multiple companies or institutions. This licensing is non-exclusive, meaning it allows for competition. This means that versions of the new medicine or the technology can be made available at an affordable price. To ensure access for populations beyond Canada's borders, federal funding for biomedical research should include obligations to sell final products at cost, or other access provisions.