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.

Hon. Jane Cordy: Thank you very much for that invitation. I will certainly follow through if I hear from the advocates. Thank you very much for that, Senator Gold.

Newborn screening for sickle cell anemia is an important tool for prevention and early diagnosis. Currently, only a select number of provinces and territories screen for sickle cell anemia. I’m pleased that former premier Stephen McNeil of Nova Scotia supported an approved newborn screening in my province in 2013 — 10 years ago.

Will funds under this program be available to the provinces and territories to help establish uniform screening policies across the country? What are the anticipated timelines for allocating the different funding streams to the provinces, territories and organizations?

Hon. Marc Gold (Government Representative in the Senate): It is an important question. I’m not seized with the details of the negotiations; they vary from province to province and territory to territory. As we know, health is an exclusively provincial jurisdiction, but the federal government is providing funds. The provinces have happily agreed to share data. Beyond that, the Government of Canada has not purported to tell the provinces how to spend their money out of respect for their jurisdiction and for their particular needs. Again, I encourage those stakeholders to work with their associations, and their provincial governments, to put that on the table so that the available funds can be used properly and effectively. Thank you.