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FOLR 1 testing for Elahere

hope2022
hope2022
in Treatment
Has anyone dealt with a US provider to get this testing? There is no mechanism in Canada to get access to this test as Elahere has not yet been approved here. My understanding is that you go through an International Patient Program at a US medical center and the test must be requested by a US provider only. Trying to navigate the US system as a Canadian is not very easy as I am finding out. Any information would be helpful, thanks. 

Comments

  • Strongwoman
    Strongwoman Moderator
    @hope2022  Thank you for your question.  I am going to bring @mfallis into this to see if she has any info or sources to obtain any info on this for you.  Fingers crossed she does.
  • mfallis
    mfallis admin
    Hi @hope2022, Let me ask some questions to our team here and I'll get back to you as soon as possible. 
  • hope2022
    hope2022
    @Strongwoman
    Thank you for passing my question along to admin. I appreciate it. I'm hoping to get more clarification from a provider in Bellingham, WA on Monday. 
    Also, a big thanks for all you do for this forum!!
  • Strongwoman
    Strongwoman Moderator
    @GloHo Your welcome.  Who knows it may also help someone else on this forum either now or in the future.  If you would like to share your info/clarification you obtain on Monday, that would be fantastic!

  • hope2022
    hope2022
    @Strongwoman
    Absolutely, I'd be more than happy to share any information I find out this week. 
  • mfallis
    mfallis admin

    Hi @hope2022, 

    I have inquired about your questions and I hope this reaches you before your appointment. 

    As far as we know, this testing is not available in Canada (which, from your message above, you already knew). We have heard that a woman from our community has had testing done at the Mayo Clinic.

    The best place to start is to talk with your healthcare team to ensure that this is a good option for you. If it is, you can reach out to any American hospital that will accept Canadian patients (like the Mayo Clinic for example). 

    Something else you could speak to your team about is Health Canada’s Special Access Program (SAP). From what we can tell, physicians fill out a request to Health Canada to have their patient granted special access to drugs not available in Canada. Presumably Elahere would be such an example, however at this time we can’t be 100% sure. My colleague Alison Ross has reached out to the SAP directly and is awaiting information back.

    If you'd like to reach out to Alison to chat more about this, you can reach her by email at [email protected] or you can call her at: 1 (877) 413-7970 ext. 237

  • hope2022
    hope2022
    @mfallis
    Thanks so much for your reply. It was my oncologist at the BCCA that suggested this drug as a possible option for me.

    I have spoken to the cancer center in Bellingham, WA that will facilitate the testing process. The first step is meeting with a doctor from the center, so I am currently waiting for an appointment time to start the process. 

    I was aware of Canada's Special Access Program and will talk to my doctor about it when I see her next week. 

    The first step is just getting tested to see if I am FRa positive and have a high enough expression to be eligible for the drug.
    Thank you again for looking into this for me, I really appreciate it. 
  • Strongwoman
    Strongwoman Moderator
    Hello @hope2022 There is a new post my @PaulineJ recently regarding this.  Perhaps you two can connect and discuss your findings to see if you are able to help each other out.  I wish you both the best of luck in your findings and journeys.
  • hope2022
    hope2022
    @Strongwoman
    Thanks so much.. I did see the new discussion posted. I decided to go through a larger cancer centre in Seattle, as opposed to the smaller center in Bellingham. Currently waiting to see if a I am even eligible to access the test as a Canadian resident. Always a waiting game with this disease, isn't it??? 
    That was a lovely picture of you and your boys that you posted!! 

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