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?