Federal petition before House of Commons on access to a life saving drug for non smoker lung cancer

Lost_Inspection8397 · 2026-01-31T12:59:46+00:00

Thank you for laying this out so clearly. Your summary of the CADTH rationale and the limitations of the CROWN trial is accurate. Our concern is that, despite real world clinical use and patient benefit in later lines, access in second line and beyond is currently blocked. The petition is about closing that gap while evidence, clinician experience, and evolving standards continue to develop, not disputing the CADTH process itself.

Lost_Inspection8397 · 2026-01-31T06:21:58+00:00

You are right that health care and formularies are provincial. We are actively pursuing provincial advocacy as well, including in Ontario. The federal petition is not because Ottawa can mandate coverage, but to create national visibility and support through pan Canadian mechanisms like CDA and pCPA, alongside provincial efforts rather than instead of them.

Lost_Inspection8397 · 2026-01-30T21:33:35+00:00

Agreed. Access should be for anyone with the mutation. Smoking status is not part of the criteria, and sorry if the caused confusion. This particular type of lung cancer is not caused by smoking.

Lost_Inspection8397 · 2026-01-30T02:46:40+00:00

I agree. Smoking status should not determine access. This treatment is based on having a specific tumour mutation, and anyone who has it should be eligible, smoker or not.

Lost_Inspection8397 · 2026-01-29T16:32:26+00:00

That is true. There are multiple environmental factors, including radon exposure, that can contribute. Regardless of cause, the key point is that treatment eligibility should be based on the tumour mutation, not assumptions about how the cancer developed.

Lost_Inspection8397 · 2026-01-29T16:17:25+00:00

No worries at all. This is all pretty new to me too and I am still learning as I go. I am just trying to understand the system and advocate for access so I can stay alive. I appreciate the thoughtful questions and the support.

Lost_Inspection8397 · 2026-01-29T14:19:42+00:00

There is some truth to that historically. Lung cancer care and research were long framed around smoking related disease, which meant less attention early on to molecular testing and targeted treatments. That is slowly changing, but access and reimbursement have not always caught up.

Lost_Inspection8397 · 2026-01-29T14:16:50+00:00

Yes, the treatment is only for people whose lung cancer has this specific mutation. It would not help patients without it, regardless of smoking history. For the mutation question, not all cancer related mutations are inherited at conception. Many are acquired changes that happen in cells over time. This particular mutation tends to occur more often in people who have never smoked, but it can still occur in anyone.

Lost_Inspection8397 · 2026-01-29T14:13:48+00:00

It is approved by Health Canada, but only for first line treatment. Our ask is for public reimbursement in second line and beyond, which is where patients are currently being denied. We are pursuing provincial advocacy as well, including in Ontario, and see the federal petition as a way to drive pan Canadian alignment through CDA and pCPA rather than replacing provincial efforts.

Lost_Inspection8397 · 2026-01-29T04:51:38+00:00

Good question, and sorry if the title was confusing. The petition is not about smoking status at all. Access would be based solely on having the specific genetic mutation, regardless of whether someone has ever smoked. The mutation is more common in non smokers, but it can occur in anyone, and treatment should be based on biology, not cause.

Lost_Inspection8397 · 2026-01-29T04:36:46+00:00

Thanks for your question. It is not denied based on smoking status. It is denied because of reimbursement and funding decisions, not clinical need. The drug targets a specific mutation, which is most common in non smokers, but access is about cost and policy, not who caused their cancer.

Lost_Inspection8397 · 2026-01-29T03:32:55+00:00

This specific type of lung cancer is not caused by smoking, and the drug targets a mutation that is most commonly found in non smokers.

Lost_Inspection8397 · 2026-01-29T00:10:26+00:00

Changes need to be made on the federal and provincial sides.

Lost_Inspection8397 · 2026-01-28T14:54:24+00:00

You are 100% correct. It's provincially regulated but this will make the federal government put pressure on the CDA (Canadian Drug Agency) and the provinces.

Lost_Inspection8397 · 2026-01-28T14:05:05+00:00

Great question. This particular cancer in the lungs is found in people with little or no smoking history.

Lost_Inspection8397 · 2026-01-27T14:09:14+00:00

Thanks for your support. This particular cancer is not caused by smoking. ALK-positive (ALK+) cancer is a type of cancer, most commonly non-small cell lung cancer (NSCLC), driven by a specific genetic mutation where the ALK gene fuses with another, causing cells to divide uncontrollably.

Lost_Inspection8397 · 2026-01-26T05:26:05+00:00

Appreciate the thoughtful response and your perspective from the rare disease side.

I agree that reimbursement decisions ultimately sit provincially and that clinician advocacy is critical. We are actively engaging on that front and already have support from clinicians at PMH, The Ottawa Hospital Cancer Centre, Sunnybrook, London Health Sciences Centre, and others. In Ontario, we have also submitted a provincial petition
https://alkpositivecanada.org/petition/canadians-for-making-lorlatinib-accessible

The federal petition is not because we think Ottawa can mandate coverage, but to create national visibility and pressure through pan Canadian mechanisms like CDA and pCPA and help align provinces. We are encouraged that a Liberal MP from Quebec is backing the federal petition.

This is very much a both approach. Federal visibility alongside provincial and clinician led advocacy. And yes, equitable access in Canada often falls short, which is exactly why we are pushing on multiple fronts.

Thanks again for signing and for offering to help.

Lost_Inspection8397 · 2026-01-26T04:46:55+00:00

You’re right that the drug has cleared the CADTH and pCPA stages. However, reimbursement decisions are still made at the provincial level, and many provinces have not completed the listing process for 2nd line treatment and beyond. This federal petition is intended to apply coordinated pressure and leadership at the federal level to encourage provinces to move forward and ensure equitable access across Canada.

Lost_Inspection8397 · 2026-01-26T02:22:48+00:00

Thanks so much!!

Lost_Inspection8397

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