Skip to main content

News Release

Ontario Connecting More People to Treatment for Rare Diseases

$178 million in annual funding supporting people living with rare diseases

January 24, 2025

Health


Share

Twitter iconFacebook iconEmail iconPrint icon

Content

TORONTO – The Ontario government is connecting more people to the care they need by ensuring Ontarians, of all ages, living with rare diseases have faster and easier access to new and emerging life-changing treatment options when and where they need it.

Ontario and Canada have signed a new three-year bilateral agreement to improve health care for people living with rare diseases in the province. Through the National Strategy for Drugs for Rare Diseases, the Government of Canada will provide Ontario with $178 million for three years to support improvements for early screening and diagnostic testing for rare diseases and to support the province’s existing coverage for publicly funded, life-changing treatments.

“Our government is making it easier and faster for people of all ages, living with rare diseases to connect to the treatment they need, when and where they need it,” said Sylvia Jones, Deputy Premier and Minister of Health. “As Ontario continues to lead the country in funding treatment and screening for rare diseases, this agreement will complement the bold, innovative action our government has taken to connect people with rare diseases and their families to even more innovative, life-changing treatment options, for generations to come.”

This agreement builds on the $615 million the province has invested over the last year to provide access to 49 drugs for rare diseases through its publicly funded drug programs, including the Ontario Drug Benefit Program, Exceptional Access Program and the New Drug Funding Program.

The National Strategy for Drugs for Rare Diseases will support improvements for early screening and diagnostic testing for rare diseases by building provincial screening and testing capacity. The following five drugs are now available to people in Ontario through this agreement:

  • Poteligeo: Cancer medicine used to treat Mycosis fungoides or Sézary syndrome - two cancers of blood cells that affect mainly the skin.
  • Oxlumo: Used to treat Primary hyperoxaluria type 1, an ultra-rare genetic disease affecting the liver.
  • Epkinly: Used to treat large B-cell lymphoma for patients who relapsed or haven’t responded to previous treatment.
  • Welireg: Used to treat von Hippel-Lindau (VHL) disease, a rare genetic condition characterized by the formation of tumours and cysts in various parts of the body, including the kidneys, brain, spinal cord, and pancreas.
  • Yescarta: Used to treat follicular lymphoma and second-line treatment of diffuse large B-cell lymphoma or high-grade large B-cell lymphoma. It is a type of CAR T-cell therapy, which involves reprogramming a patient's own T cells to attack cancer cells.

As part of Your Health: A Plan for Connected and Convenient Care, the Ontario government is providing public access to new medications and treatments to connect more people to world-class care, when and where they need it.


Quick Facts

  • In March 2023, the Government of Canada announced an investment of up to $1.5 billion over three years to support the National Strategy for Drugs for Rare Diseases, including up to $1.4 billion for bilateral agreements with provinces and territories to help patients with rare diseases access treatments as early as possible for a better quality of life.
  • Innovative treatments for rare diseases can cost anywhere from $100,000 to more than $3 million per patient per year, and these therapies may be lifelong treatments.

Quotes

"Reaching these agreements is another step in our collaborative efforts to build a stronger public health system for Ontarians. By investing in drugs for rare diseases, this agreement will improve affordability and access to medications, early diagnosis, and screening, so that people in Ontario with rare diseases have the best health outcomes possible."

- The Honourable Mark Holland
Minister of Health

"Innovative Medicines Canada welcomes the signing of this bilateral agreement, an important step toward improving access to life-saving medicines for patients living with rare diseases in Ontario. We are committed to working with both the provincial and federal governments to improve health outcomes for Ontarians. By working together, we can continue to accelerate access to diagnostics and medicines, foster innovation in the life sciences, and address unmet medical needs, ensuring that no patient is left behind."

- Bettina Hamelin
President, Innovative Medicines Canada

"Alexion Canada applauds Ontario for advancing rare disease care by signing the National Strategy for Drugs for Rare Diseases agreement. This important step reflects a clear focus on improving the lives of patients living with rare diseases and their caregivers, who face significant challenges in accessing timely and effective treatments, along with lengthy diagnostic times. Alexion looks forward to working with the government to deliver on this strategy and create lasting change for rare disease patients in Ontario."

- Karen Heim
Vice President and General Manager, Alexion Canada

"Today's announcement is a significant advancement for patients across Ontario, particularly those suffering from rare diseases. This investment ensures broader access to innovative therapies and demonstrates a commitment to helping improve the quality of life for individuals and families facing the challenges of rare diseases. We are proud to support the Ontario government in enhancing patient access and remain dedicated to initiatives that prioritize patient care and health care innovation."

- Jennifer Chan
Vice President Policy and Government Relations, Merck Canada

"We applaud the signing of a bilateral agreement between Ontario and Health Canada under the National Strategy for Drugs for Rare Diseases. We are pleased Ontario has taken this critical step forward to improve the lives of people suffering from devastating diseases, including coverage of EPKINLY for cancer patients with Relapsed or Refractory Diffuse Large B-Cell Lymphoma."

- Rami Fayed
Vice President and General Manager, AbbVie Canada


Related Topics

Government

Learn about the government services available to you and how government works. Learn more

Health and Wellness

Get help navigating Ontario’s health care system and connecting with the programs or services you’re looking for. Learn more


Share

Twitter iconFacebook iconEmail iconPrint icon

Media Contacts

Ema Popovic
Minister Jones’ Office
ema.popovic@ontario.ca

Media Relations
Communications Branch
media.moh@ontario.ca