It was over a weekend in spring that Kathleen and Mark Drage helped to fix up an old family beach house, on the coast north of Perth, to get it ready for sale.

They didn't know it then, but that busy bee would change their lives.

The house was in an idyllic location, perched among a scattering of shacks in the sleepy holiday spot of Guilderton, where Moore River meets the sea.

It just needed a bit of a clean-up and re-paint. While Mark was working around the back, Kathleen was trying to help fix the TV aerial.

"She climbed onto a very old asbestos roof and ended up with the fibres all over her clothing," Mark recalls.

"I went off my nut."

Kathleen ended up pulling her dust-covered shirt over her head and wiping herself down.

A devastating diagnosis

They didn't think much more about the incident until about 20 years later, when Kathleen was diagnosed with the aggressive asbestos cancer mesothelioma, picked up after a routine pap smear.

"Devastation" is how Mark describes the impact of the diagnosis.

"We were both working hard, saving for our retirement, and that curveball gets thrown at you," he said.

Asbestos exposure is the only known cause of mesothelioma.

The couple traced it back to the weekend at Guilderton.

What followed was eight years of living with the intense uncertainty of the disease and the relentless treatments needed to keep Kathleen alive.

As well as having major surgery, she took part in four drug trials, while at the same time campaigning to raise awareness and fundraise for medical research.

Kathleen died in 2023.

Renovations fatal

Now Mark is speaking out about the dangers of DIY on old homes that still contain the potentially deadly products.

People renovating old homes are a growing cohort in the over 4,000 Australians who still die each year from asbestos-related diseases, support groups say.

"Some of these products should have had a product recall years ago," Mark said.

'I couldn't breathe'

On the other side of the country, another family is trying to cope with a similar devastating diagnosis, except in this case, the patient is only 18.

Jarni Greatorex is believed to be the youngest Australian currently being treated for mesothelioma and among another growing cohort of people exposed to asbestos outside of their work.

The teenager received the shock diagnosis a fortnight after her 16th birthday, and was in and out of hospital for over a year with blood clots.

"I ended up in hospital with my lungs filled with fluid. I couldn't breathe," Jarni said.

"My abdomen had filled with fluid."

After biopsy surgery, the fluid then moved into Jarni's heart chamber and she had to be rushed into emergency and placed in an induced coma.

Instead of doing what other teenagers would be doing – getting their best grades, finishing school and enjoying their youth – Jarni's been undergoing intense treatments including chemotherapy – with the impact so severe she couldn't walk and had to be in a wheelchair.

She missed her Year 11 formal.

Her mother Jessie said Jarni's exposure to asbestos is still "under investigation". She's close to tears when she talks about the normalising of asbestos in the community.

"The government should be doing something about it," she said.

"There should be more of an outcry.

"Children are affected by it too. It's time to get rid of it. It's time to get it out of all the homes.

"Eradicate it like they should have done 30 years ago."

Danger inside the home

Asbestos is present in an estimated one third of Australian homes, and the Asbestos and Silica Safety and Eradication Council (ASSEA) wants to make it compulsory for buyers and renters of old houses to be told about it before they sign on the dotted line.

The council's national plan proposes incentives to encourage home-owners to have asbestos inspections and surveys carried out.

The move is well overdue according to Barry Robson, an ex-Sydney wharfie and union leader who was involved in the protests against asbestos manufacturer James Hardie in the 1990s and has lost many workmates to mesothelioma.

He's worried about the growing incidence of "non-occupational" exposure to asbestos across the country.

"That's why we're calling for a register on every house that was built before 1990," he said.

"If that house is up for sale, we would like to see an asbestos inspection certificate."

Home owner burden

The real estate industry is more cautious about the proposed changes.

Real Estate Institute of Australia (REIA) president Leanne Pilkington supports transparency but said "non-friable" or "bonded" asbestos products are considered very low risk.

Bonded asbestos means that fibres are held within a solid matrix — for example, cement in asbestos cement sheeting — and are less likely to become airborne, unless the product is damaged or has deteriorated. 

Asbestos fences, roofs and vinyl floor tiles are other examples of non-friable products.

"Ultimately, any regulation should strike a balance between protecting public health and maintaining a reasonable burden for property owners," Ms Pilkington said.

REIA wants properties with bonded asbestos to be exempt from mandatory inspections unless there is a "clear and present risk".

But, it’s a proposal that will be strongly opposed by Mr Robson and other campaigners who also want a so-called "10 square metre" rule abolished, which allows householders to dispose of a small quantity of bonded asbestos without a licence.

Asbestos disposal danger

Sean Lamprecht runs a demolition business that specialises in the safe removal of asbestos north of Perth, where the material is still widespread in everything from eaves and walls, to fences and roofs.

When the ABC visited his current demolition project, he and his colleague were taking no chances with safety.

They’re dressed in full PPE, carefully dismantling asbestos cement sheeting from the walls of a rundown house.

The asbestos sheets have to be individually hosed down before being laid gently on black plastic on the back of a truck.

The whole area is fenced off with warning signs.

Mr Lamprecht believes there's still a lot of complacency about the dangers of asbestos dust.

"People are a bit sort of naive or flippant about it. They think it won't happen to me," he said.

He supports the proposal to incentivise the safe removal of asbestos from houses, which ASSEA estimates could prevent up to 28,000 deaths by 2100.

In the meantime, he urges people to be cautious.

"My advice to people that are thinking of doing it themselves is number one – probably don't," he said.

“But if you have to, get some training. There are plenty of companies out there that can provide training.”

Mr Robson is firmly against householders doing their own removal.

"Get the professionals in," he said.