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Thank you for helping maintain access to treatments!

Changes are currently being proposed to Bill 15 to restrict access to drugs not approved by INESSS when you are hospitalized. This new law would restrict the freedom of the attending physician to choose the best treatment for their patients.

We are concerned by these changes, mainly for two reasons:

  1. These changes could have serious consequences for patients with a rare disease. As medications and treatments are often experimental in nature, they are not always approved by the INESSS and could be more difficult to obtain;
  2. Any change in the law aiming to limit access to medication, however small the impact may seem, opens the door to future restrictions, which could have consequences for a considerable number of patients, starting with those who receive the most expensive treatments, i.e. treatments for rare diseases.

For these reasons, we believe it is essential to stop this bill in order to preserve access to medication and the freedom of treating physician.

Help us convince our MNAs and the Minister of Health, Christian Dubé, not to touch these laws and deprive us of our treatments.

By entering your postal code and signing the letter with your name, you can automatically send the letter to your MNA.

Together, we can make it happen!


42% of new drug launches in Canada were delayed for 6+ months or not launched here at all


18 new molecules being studied globally for PNH, but zero confirmed launch plans for Canada


Still only 1 treatment for PNH accessible through public funding across Canada

We want to hear from you!!

We hope you will join our advocacy efforts by using the tools on this website. Please reach out to the Canadian Association of PNH Patients (PNHCA) with any questions about our work, to share your PNH stories, or to learn more about our advocacy campaign.

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