Wait times for gene tests so long you can develop cancer waiting

Demand for genetic testing is surging but the workforce is not keeping up and long waiting lists are the result.

Relatives of breast cancer patients face a 12 month wait for testing to find out if they too carry cancer causing genes — during which time they could develop cancer themselves.

Breast cancer charity Pink Hope said a workforce shortage, exploding demand for these types of tests and tough eligibility criteria for publicly-funded testing were behind the problem.

Pink Hope founder Krystal Barter said it was time to ditch the hurdles and allow widespread voluntary genetic testing as “arguably the most equitable and cost effective way of doing it”.

“Testing isn’t as expensive it used to be,” she said.

Pink Hope will on Wednesday launch a new Genetic Pathway Resource to help people navigate the public and private genetic testing available.

One in 20 (5 per cent) of women with breast cancer, and about 1 in 7 (15 per cent) of women with ovarian cancer, have an inherited mutation in a known high-risk cancer gene.

Krystal Barter, founder of the Pink Hope charity, supports genetic testing because it could help prevent cancer diagnoses in younger family members. picture: AAP Image/Andi Yu

Demand for genetic testing doubled from 2013 after actor Angelina Jolie, who carried the BRCA1 gene, had a double mastectomy to reduce her risk of cancer.

The problem is there are only around 250 clinically-practising genetic counsellors in Australia and New Zealand dealing with increasing demand for newborn- and all cancer-related genetic testing.

A 2017 Urbis report for the NSW Government found “local wait lists for Local Health District genetic services from six months to two years”.

Wait times of “up to, and over, 12 months” for genetic tests were reported in a 2021 report by the NSW Agency for Clinical Innovation.

News Corp understands, in Victoria, family members of people carrying a cancer causing gene are waiting up to three months for an appointment to be tested. It then takes 8-12 weeks to get their test results.

In Victoria, the Royal Children’s Hospital website said “there is usually a waiting time of approximately 6-8 months” for an appointment at its genetic testing clinics.

The Victorian Clinical Genetic Service reported last month it was experiencing temporary delays to the reporting of genomic results of 4-7 months.

As the cost of genetic testing fell and access to public services was restricted, there was increasing demand for private genetic services, genetic counsellor Amy Pearn from Gene Council said.

“There’s an awareness, I think an increased awareness, of genetics in health and implications for people. They know it’s out there and they want it,” she said.

It cost about $200-$300 to see a private genetic counsellor and $400-$1000 to get a genetic test done, she said.

Pink Hope’s new Genetic Pathway Resource explains how to find a qualified genetic counsellor and how to ask the right questions.

“So if you’re going to go down the public route, what you would need to do versus go down the private route,” Ms Barter said.

Natasha Vercoe of Melbourne faced three-year wait before she could see a genetic counsellor. Picture: Supplied

Melbourne sales manager Natasha Vercoe has several family members with cancer but she faced an excruciating three-year wait before she could see a genetic counsellor.

“The testing company kept on saying they’re only taking children, so I was on the waiting list for three years,” said the 34-year-old, who was living in the Northern Territory at the time.

Of the seven girls in her extended family who were tested, three were positive for the BRCA1 gene mutation, including Ms Vercoe, who had a double mastectomy to prevent cancer.

One of her cousins was diagnosed with triple negative breast cancer.

Ms Vercoe said “100 per cent” access to testing had to be improved for family members of patients who carried a cancer causing gene.

“I like to make sure that people are aware that there is a gene and making women be able to be in charge of their bodies and their choices has always been really important to me,” she said.

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