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  • 1.  Access to Elahere

    Posted 05-23-2026 12:49
    @ Alwayslearning and others. Yes, it is great to have CF Canada advocating for us, but sometimes it just needs more push. I was on the medical-science side when patients fought for drug coverage for the cystic fibrosis life-saving drug ivacaftor in 2014. It was patients themselves achieving this. Canadian received drug access 2 years after patients in the US and Europe, and some Canadians died waiting for it.

    Twelve-year-old Madi Vanstone of Beeton, Ontario became the public face of the 2013-2014 fight for ivacaftor (Kalydeco) coverage, lobbying the Ontario government to cover the \(\$300,000\)-per-year drug. Her highly publicized campaign and meetings with Queen's Park officials ultimately pressured the provinces into a funding deal in June 2014. [1, 2, 3, 4, 5]
    Key Moments from the Campaign:
    • The High Cost barrier: When ivacaftor was approved by Health Canada, its \(\$300,000\) annual price tag placed it entirely out of reach for middle-class families without full private insurance.
    • Madi Vanstone's Story: Madi, who was diagnosed with a rare G551D mutation, began a temporary trial but faced the terrifying prospect of her funding running out. Her family, alongside dozens of other patients across Ontario, reached out directly to the media and politicians to demand coverage.
    • The 2014 Resolution: After months of intense pressure from advocacy groups and families, the Alberta-led pan-Canadian Pricing Alliance negotiated a bulk-purchasing deal with manufacturer Vertex Pharmaceuticals in May 2014. Ontario officially agreed to fund the medication through OHIP in June 2014. [1, 2, 3, 4, 5, 6, 7, 8, 9]


  • 2.  RE: Access to Elahere

    Posted 05-24-2026 17:04

    @Tanja what an amazing story that is. Thank you for sharing. I know OCC representatives are trying to get more information which is a key piece to this story. We need a bit more data to understand how we need to focus our fight. It is good to know however that with many voices change can occur!! What you've shared certainly provides hope!

    #OCCinfoandupdates

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  • 3.  RE: Access to Elahere

    Posted 05-24-2026 22:08
    @Alwayslearning. There is a "good news item" from the SGO meeting in April with Prembolizumab +Paclitaxel improving overall survival compared to weekly paclitaxel alone in patients . This was presented by Prof. Zsiros who is the Oncologist at Roswell Park Cancer Clinic in Buffalo from whom I got my 2nd opinion.






  • 4.  RE: Access to Elahere

    Posted 05-25-2026 14:25

    @Tanja thank you for sharing. Always nice to see the term "good news" related to this cancer. It's impressive what the Society of Gynecological Oncology (SOG) is up to. I'm going to bookmark their website to keep checking back on their news items. I appreciate the information.

    #Clinicaltrialsandresearch

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  • 5.  RE: Access to Elahere

    Posted 30 days ago
    @Alwayslearning.  Just to highlight the News. It said that combination of weekly Paclitaxel with Pembrolizumab has a significant effect on progression-free and overall survival in women with plain resistant OC.

    This is huge! Immunotherapy, mainly based on immuncheck inhibitors,  have been a game change in the treatment of many cancers. e.g works really well for melanoma. But so far no study has shown an effect in ovarian cancer. The trick, and this is what it is shown here, is that it does work for OC but it can not be given alone, but rathe rin combination with paclitaxel (or in future with other immune enhancers). This is an amazing mile stone for treatment possibilities in OC.
    Even more as it worked in women with platin resistent cancer,  and in both, those with good PDL-1 expression and those without.

    So, this must go into our clinical practice in Canada. Just in brief, immuncheck point inhibitor work to stop the tumor of turning off your own immune defence enabling your own T-cells to fight the tumor again.






  • 6.  RE: Access to Elahere

    Posted 29 days ago

    @Tanja as it's only recently received approval from the U.S. FDA I'm doubtful it will go into use in Canada quickly. Of course that makes me sad as Canada tends to lag. I'm copying @LeslieA who is attending the upcoming Canadian Conference on Ovarian Cancer Research in Vancouver in a few days. Leslie it would be interesting to know if this is on the radar in Canada. Perhaps one to add to your list of questions? 

    #Clinicaltrialsandresearch

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