Jody Bews-Hair: NZ Familial Breast and Ovarian Cancer Trustee calls for an end to insurance discrimination in healthcare

Two New Zealanders who took drastic steps to prevent deadly hereditary cancers recently informed Parliament that insurance discrimination is stopping others from doing the same - costing lives as a result.

As part of AGenDA’s campaign to end 'genetic discrimination', Jody Bews-Hair and Julian Grennell urged the Government to protect Kiwis from being penalised by insurers for their genetic test results.

Jody Bews-Hair says genetic testing saves lives, and people should be encouraged to take the tests without fear.

"Anything that encourages people to get testing is really important, because it literally saves lives - and it ultimately saves money down the track. It's a lot cheaper to fund a prophylactic surgery or screening than it is to fund 10 years of cancer treatment."

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Episode Transcript

Speaker 1 (00:00):
Now here's a question for you. Should insurance companies have
access to your genetic data. There is a call for
the government to ban insurance companies from what's called genetic discrimination. Now,
that is when they ask you for your gene testing,
and if your gene testing shows that you're at higher
risk for a type of disease, then the insurance company
makes you pay more for it. Now, Jodybu's hair is
a part of the Familial Breast and Ovarian Cancer Trust. Hey, Jody,

(00:23):
hi hitter, you got gene test today?

Speaker 2 (00:26):
Certainly it did, and it showed what showed that was
positive for the Bracker two Brca two gene mutation, this
which is an extremely high risk for breast and ovarian cancer.

Speaker 1 (00:40):
Right, and so as a result, did you have your
breasts taken off?

Speaker 2 (00:43):
I did. I had a double mistectomy at the age
of forty and reconstruction and then I also had my
ovaries and fillopian tubes taken right as well.

Speaker 1 (00:54):
How much does that drop your risk of cancer by.

Speaker 2 (00:57):
It dropped it from around at that time upwuts to
eighty five percent. Although I was told at the age
of forty that it was not if I was going
to get breast cancer. It was when and it was
probably going to be in the next year, and it
dropped it down to about one percent because I still
have around one percent of breast tissue left.

Speaker 1 (01:17):
Okay, so how come the insurance company is making you
pay more for your premiums than if you're at a
lower risk than most women.

Speaker 2 (01:26):
I think it's just one of the challenges of everyone
grappling with how genetics and predictive testing works. I mean, obviously,
we still have family history, and I think that's fair
enough to continue to look at family history. But yeah,
in terms of I've asked for a review of the

(01:47):
loading on insurance because yeah, I don't have that risk anymore.
I don't have any breast tissue. So yeah, it's pretty
hard to argue that I have the same risk as
the rest of the population because the rest of the
population is ten percent and much none.

Speaker 1 (02:00):
I don't get it, Jody. Are they just not thinking
this through or is there something that they at the
insurance company knows that you don't know.

Speaker 2 (02:07):
I don't think it's quite like that. I just think
it's part of that challenge of keeping up with the
changes and technology, the changes and what's happening around testing.
I think it's something for you know, actually and underwriters
to grapple with, and I think it also becomes incumbent
on us to challenge and find out about the loadings

(02:30):
as well. You know, it's a similar My daughters have
seventy five percent loading on their life insurance and they
haven't been tested.

Speaker 1 (02:38):
Yeah, yeah, yeah. So are you better off then not
actually doing the test in the first place and just
just taking your chances?

Speaker 2 (02:47):
Definitely not, I think, And that's you know, one of
the reasons that Agenda is doing what we're doing to
try and advocates for the total band because genetic tests
and say lives. I mean, if I hadn't done that test,
there's a high chance now at the age of fifty
two that I'd be dead because most of the people

(03:08):
in my family who got breast cancer died before the
age of fifty. And so yeah, anything that encourages people
to get testing is really important because it literally saves
lives and ultimately saves money down the track. It's a
lot cheaper to funder prophilectic surgery or screening than it

(03:30):
is too gunned ten years of cancer treatment, which is
what my sister went through.

Speaker 1 (03:35):
Jody, Hey, thanks very much. Really appreciate a beast of
luck with this campaign. Excuse me. Jody Bue's hair part
of the Familial Breast and Ovarian Cancer Trust. For more
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