Genomic Testing in Canada

[Thatflowerlady]

A question for you ladies ,

How much have you had to pay for genomic testing ? My oncologist says it is not covered by insurance and can be an expensive test .

Any information would be appreciated .

Luann

[Hidden]

Hi Luann -

I just finished up the process (in the US) and learned that both Guardant360 and Foundation One (essentially the same, according to my doc) charge about $3,500 USD for "self-pay" (although the rack rate, i.e. what they put on a piece of paper before they agree on a "negotiated rate" with insurance) is like $5,800, . I've heard, through one source, that it costs $7,000 Canadian, in that country, but I don't know if this is "rack rate" or "self-pay", but I imagine they might not have these distinctions in Canada?

Insurance initially rejected my claim and so I mentioned the self-pay to my doc, and they offered a third option...Tempus. I said "I've never heard of them, is this a lesser quality test?". They said "No", but their process for financial assistance is "looser"...please PM me for details, if interested.

Guardant ended up sorting things out w/ my insurance and so I got their test at no cost...

Let me mention this...I've heard some skepticism re: the value of these tests from reliable sources. Didn't stop me, mind you, but led me to believe that maybe there's a bit of hype? So if anyone isn't able to get the test and any resulting treatments, maybe it's not as huge a deal as one might think...

Good luck with it!

Lynn

[Thatflowerlady in reply to Hidden]

Thank you Lynn

[Lovemylakie]

I live in Indiana USA and I paid nothing. The company had me feel out a financial form and they covered the cost. You may want to inquire about it. I am retired so I am glad I didn't have to pay.

Good Luck

Robin

[Hidden]

Living in the UK Luann I didn’t have to pay as my Oncologist referred me.

Hope you have some clear answers.

Cheryl

[Teddielottie in reply to Hidden]

Cheryl , how long ago did you get the test in the U.K. and what was the name of it ? I was under the impression that it is no longer available free on nhs ? Thanks x

[Teddielottie in reply to Teddielottie]

Have any other ladies in the U.K. had genome testing on NHS recently ? x

[Hidden in reply to Teddielottie]

It was 5years ago now. I’m not sure if I still have the paperwork as we have moved since then.

Will have to dig deep.

[Teddielottie in reply to Hidden]

No problem ... just when I asked my onc recently if genome testing was available, she said it wasn’t available on nhs . ( Genetic testing is different ). I think there was a big trial but it has ended . But wondering if Pikray drug becomes available in U.K. next Spring , will they then do the testing ? Thanks x

[Hidden in reply to Teddielottie]

Ok, hope you have some results that help.

[Thatflowerlady]

Thank you Sandra !

[HaveHope2]

I dont recal the exact amount but I do believe it was around 7,000 Canadian. We went through foundations in the US. We did submit it on our taxes though, and were able to use it as a write-off. So that did help a bit. I'm in BC.

[hopenowandtomorrow]

I am in the US and they billed me $8000 last year. I ended up paying nothing. They said they would write it off. 🙏❤️🙏

[Thatflowerlady]

Thank you . Have you started treatment recommended by the testing ? If so are the treatments showing good results ?

[SunsetSeeker]

See if you can get it done through a clinical study. I just had mine done through the OCTANE study (in Ontario) but I think recruitment for that study ends today. My doc just fit me in before the deadline. There may be more going on in other places.

Having said that, I was told, and also heard it on a webinar, that genome sequencing only benefits a few people (but obviously it's great for those few) because often no actionable mutation is found, or if one is found there isn't a targeted treatment for it or there might be a treatment but it won't be available to you (for example, it might not be approved in Canada or it might be approved for a different kind of cancer.)

[ChrisVict in reply to SunsetSeeker]

You are correct I had to check if I had Pikray mutation since this was the only hormonal option left. So I did the test they

charged 8k my insurance paid a fraction and am at this point in time still responsible for balance as per EOB. I hope they write it off as well. Just very anxiety provoking!

What’s worse is they did not find a targeted mutation that I could be treated for but I needed the peace of mind to know

The next treatment was my best option

[Thatflowerlady in reply to ChrisVict]

That would be very disappointing. I hope they don’t pursue payment .

Do you mind me asking what your next line of treatment was ?

Luann

[ChrisVict in reply to Thatflowerlady]

Affinitor and exestamane still too early to know if it’s working!

[Thatflowerlady]

Thank you for that reminder I was signed up for the Octane study in May , 2019 but nothing has ever been mentioned about it since . I will have to call and ask at the cancer centre. I had assumed I had not been accepted .

Luann

[Hidden]

I emailed Foundation One and they told me over $6000. When I questioned that they said there are discounts and sometimes you can be reimbursed after but no way of knowing. I’m in NS and mine would have to go to Ontario or Quebec as nobody does it here. Our Insurance won’t cover it yet they paid for Ibrance. Doesn’t make sense

[syl70]

I did a foundation one a few years ago. Medicare & my supplemental insurance paid. They found mutations, but there were no current trials or treatments recommended at the time. My oncologist referred me to a Tempus b/c of a new liver progression. She sent my liver biopsy and there is a clinical study for that mutation in my area North Carolina. I'm a candidate for the study and will be going through all the prior testing next week. My insurances also paid for the Tempus.

[Thatflowerlady]

I have had the testing and like you I didn’t have any mutations that would benefit at this time to new treatments available . I had forgotten all about the study , after i had signed up ( different oncologist than present one ) I never heard anything about it again . When I asked my present oncologist she seemed surprised that it had been done .

Maybe the next new treatment will be for us Sandra !

Luann