HEALTH SLUG IS JUST SO UNFAIR
“They put a 100 per cent premium on top of my premium because of my testing and exclusions Nicole Shepherd
Nicole Shepherd is paying twice as much as others for life insurance and is banned from a payout if she develops any kind of cancer – all because of a genetic test.
She is one of thousands of Australians being penalised for proactively being screened to determine if they need medical action such as surgery that could save their lives. A new Monash University study reports another woman, 43, who had no personal history of cancer but who carried a breast and ovarian cancer-causing BRCA gene was also denied cover.
This was even though she had her ovaries and fallopian tubes removed, and regular mammograms that severely reduced her risk of developing cancer.
Ms Shepherd discovered she was predisposed to Lynch syndrome – a hereditary condition – when her father was diagnosed with bowel cancer two decades ago. When she sought life insurance last year, her insurance broker told her the cheapest policy he could find for her would cost $1400 a year for $1.7m worth of cover.
This was despite having her uterus removed and undergoing twice-yearly colonoscopies and mammograms to reduce her risk of cancer.
Worse, the cover excluded her from a benefit payout if she got any type of cancer – not just the cancers her genes place her at greater risk of getting.
“They put a 100 per cent premium on top of my premium because of my testing and exclusions.,” said Ms Shepherd, a mother of two.
“And they’ve also excluded me from every type of cancer, not just the cancer that’s linked to my genetic condition. It was a pretty traumatic experience.”
Clinical geneticist Professor Martin Delatycki said data indicated that people with Lynch syndrome who have regular colonoscopies and women who have their ovaries and uterus removed “have reduced mortality compared to those who don’t have surveillance and removal of ovaries and uterus”.
“They still have a higher mortality than a person without Lynch syndrome. The removal of all cancers from the policy and doubling the premium appears unjust and not evidence-based,” he said.
“There is good data on which cancers occur more frequently in Lynch syndrome, and there is no increased rate of death from non-cancer causes, to my knowledge.”
Although a moratorium requires insurers to offer cover of up to $500,000 without asking for genetic test results, Ms Shepherd said that wouldn’t have been enough to cover her mortgage and small-business commitments.
“I’m doing the right thing by screening and undergoing radical surgery to prevent my risk,” the 41-year-old said.
“People who don’t do genetic testing cost the insurer more because they get a huge payout for their conditions that they didn’t even know that they had.”
Ms Shepherd was just 19 when she had the genetic test and said that, back then, she wasn’t thinking about the financial security she would need if she had children and a small business to support.
“I was young. I wasn’t thinking about kids and mortgages and futures and things like that,” she said.
“I didn’t you know that I wouldn’t have insurance or would have limitations as I got older.”
Had she known what lay ahead, Ms Shepherd said “I probably wouldn’t have done the test”.
She is going public about her experience because she knows the genetic discrimination could also affect her children, aged two and six, when they eventually apply for insurance cover.
The Monash University research – published in the journal Nature – found “very few individuals in this study had successfully obtained cover (outside of basic superannuation cover) after receiving their genetic test results”.
“Some individuals reported that although they had not been declined formally by an insurer, their financial adviser told them that they wouldn’t be able to obtain cover,” the study said.
Of the 367 people who took part in the survey, only 17 per cent were aware that the use of genetic test results in life insurance was legal.
Only 4 per cent thought the practice should be allowed.
Despite the $500,000 cap, “some respondents reported ongoing difficulties accessing life insurance products, even after the moratorium”. Almost nine in 10 people surveyed wanted the federal government to introduce regulation in the area.
Only 16 per cent of people thought the moratorium amount was enough and two in three people thought there should be no financial limit on cover.