Canadians: We have just heard that we have a chance to improve clinical trial transparency in Canada. Bill C-17 or “Vanessa’s Law” is being considered this Tuesday and there’s a chance to get clinical trial transparency measures added to it.

We urgently need you to write to the MPs on the Standing Committee on Health to tell them how important clinical trial transparency is. A template letter is below, followed by the emails for the MPs on the committee. We’ll keep you posted about the Bill’s progress, but please send your emails today.

Draft Letter

Dear members of the House of Commons Standing Committee on Health

I’m writing to you regarding Bill C-17, known as “Vanessa’s Law”. I am pleased that Parliament is considering a number of new measures such as the power to recall drugs that will significantly improve patient safety; however, I strongly believe the Bill needs key amendments to fully protect patient safety.

Specifically, I strongly believe the Bill needs key amendments to require all clinical trials and observational studies

  1. be publicly registered before they begin and
  2. have their full methods and results reported within one year of completion.

Results from around half of clinical trials have never been published and many have never been registered. New laws in the United States and Europe require the registration and reporting of future clinical trials but in Canada there is no legal requirement to register or disclose the results. Information on what was done and what was found in these trials could be lost forever to doctors and researchers, leading to bad treatment decisions, missed opportunities for good medicine, and trials being repeated. Further, the regulator’s interpretation of the evidence must be publicly available when it approves, refuses or recalls a drug from the market.

I understand that Bill C-17, in its current form, lacks these transparency measures. Therefore I’m writing to you, in your capacity as a member of the Standing Committee, to urge you to consider amending Bill C-17 to make sure Canada’s drug regulatory system is transparent. This critical amendment would ensure that the evidence base behind a drug is open to scrutiny, physicians and other health care providers are adequately informed about a drug’s risks and benefits and patients are better protected from harm.

Sincerely,

 

[INSERT NAME]
[POSTAL CODE]

Other potential points for your email:

  • Information about clinical trials and observational studies should not be considered confidential. The information is generated because people participate in trials in the hope of advancing knowledge. Treating the information as private property ignores the contribution that clinical trial participants make.
  • Requiring the registration of clinical trials and observational studies alone is not enough to ensure transparency. Reporting results and providing independent access to clinical trial data are also essential.

Committee members: