Hon. Marc Gold (Government Representative in the Senate): Thank you very much for bringing attention to Canada’s first-ever national strategy for drugs for rare diseases, which was announced earlier this year. It is supported, as senators may know, by an investment of up to $1.5 billion over three years. Regarding the distribution of the funds, up to $1.4 billion may go to the provinces and territories through the bilateral agreements that are being negotiated. Further details, including details with regard to your question on the issue of sickle cell anemia, will be announced as the negotiations move forward.

With regard to your other question, senator, my understanding is that the national strategy reflects extensive consultations that garnered diverse perspectives from over 650 individuals and organizations, including patients with lived experiences, family members and caregivers. If it turns out, senator, that, for some reason or another, the interests of those representing sickle cell anemia have not been consulted, please let my office know, and I will make every effort to connect them with the appropriate person.

Hon. Jane Cordy: Senator Gold, in March of this year, the government committed up to $1.5 billion over three years to establish the first-ever national strategy for drugs for rare diseases — that is really good news.

On Monday, we marked the sixth National Sickle Cell Awareness Day in Canada. An estimated 6,000 Canadians live with sickle cell disease/anemia. After speaking with patients and advocates this week, the announced drug strategy for rare diseases has raised hope, but also uncertainty. Senator Gold, sickle cell advocate groups and associations are concerned that their input might not be considered, or that they won’t be included in the government’s advisory council, which is promised to be established by this summer. How can advocates get a seat at the table to ensure that sickle cell anemia is not left out, and to ensure that new drugs will finally be available to those with sickle cell anemia?

Hon. Marc Gold (Government Representative in the Senate): Thank you very much for bringing attention to Canada’s first-ever national strategy for drugs for rare diseases, which was announced earlier this year. It is supported, as senators may know, by an investment of up to $1.5 billion over three years. Regarding the distribution of the funds, up to $1.4 billion may go to the provinces and territories through the bilateral agreements that are being negotiated. Further details, including details with regard to your question on the issue of sickle cell anemia, will be announced as the negotiations move forward.

With regard to your other question, senator, my understanding is that the national strategy reflects extensive consultations that garnered diverse perspectives from over 650 individuals and organizations, including patients with lived experiences, family members and caregivers. If it turns out, senator, that, for some reason or another, the interests of those representing sickle cell anemia have not been consulted, please let my office know, and I will make every effort to connect them with the appropriate person.