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Health

Time running out for national apology as survivors of catastrophic drug thalidomide left feeling 'forgotten'

Before thalidomide survivor Trish Jackson was even born, her body was irreparably "damaged".

Now in her 60s, Ms Jackson is one of the youngest survivors of thalidomide.

The drug was sold worldwide as a treatment for morning sickness in pregnant women that resulted in catastrophic birth deformities in about 10,000 babies around the world in the 1950s and 60s.

Ms Jackson was born with limb differences but said the damage goes far beyond her physical body.

"It's everything, it destroys your body," she said.

"It affects you from the minute your mother swallows the tablet to the very end of your life.

"It's not just the [differences in my] arms, it's all the internal damage that it created."

Survivors of the drug have long been calling for a national apology from the federal government after it failed to recall the drug from pharmacies even after the side effects became known.

'Forgotten, isolated and wronged'

A Senate report released in 2019 found the federal government had a "moral obligation" to thalidomide survivors, owing them both a national apology, and ongoing disability support payments to those impacted by the drug.

But four years on from the report, survivors like Ms Jackson are still waiting for an apology. 

They say the endless waiting game has come amid rapidly declining health.

"We are just deteriorating so fast," she said.

Fellow survivor Lisa McManus was instrumental in the initial Senate inquiry due to a desire for someone to be held "a little bit more accountable for what happened to us".

"We just felt very forgotten, very isolated and very wronged," she said.

Ms McManus said survivors felt "victory" and "validation" when the report was initially released, but have felt concerned with the little progress that has been made since.

She said in the time it's taken since the report was released, victims and their mothers have died.

"It has just been detrimental to the wellbeing of our minds and our hearts," she said.

'Died waiting for that apology'

Ms McManus said in 2017 a then health minister told her survivors and their loved ones would never receive an apology "because the government did not feel that they had anything to apologise for".

The federal government had since committed to an apology and a national memorial.

In a statement, the Department of Health and Aged Care said there were discussions for an apology to take place this year.

"[The department] will continue to engage with the Prime Minister and Cabinet and thalidomide survivors regarding the arrangements and timing for an apology in 2023," the department said.

It said it decided to delay an apology initially planned for March 2021 due to COVID-19 constraints that restricted visitor access to viewing galleries at Parliament House.

"This resulted in a decision to delay the national apology, in consultation with thalidomide survivors who expressed a desire to be able to attend the national apology in person," it said.

Ms Jackson said while the apology would not fix everything, it would act as "verification" that the government "did wrong".

"I don't know how many parents and survivors have died waiting for that apology," she said.

Scrapped national memorial an inaccessible 'goat track'

Before the inquiry was handed down, then health minister Greg Hunt announced the approval of a memorial garden at the National Arboretum in Canberra.

But Ms McManus said the location was "nothing more than a paddock" that survivors would not be able to access.

"[It] was over a kilometre of winding [path], and I'm talking goat track, to access this plot of land that had been purchased with the intent of this being our memorial," she said.

The current federal health department said it considered the site at the National Arboretum, but decided it was "inappropriate" after consultation with survivors.

In a statement, the department said a new site had been approved for a "National Site of Recognition", rather than a memorial garden, following further consultation with survivors.

The new location now stands on the foreshore of Lake Burley Griffin in the eastern section of Kings Park in Canberra, and is set to feature a "glass brick sculpture and a seating area" for reflection.

Construction is set to be completed in the second half of this year.

"The design has elements to help convey the significance, impact and history of the thalidomide tragedy in Australia," the department said.

'Step up and hurry up'

Ms McManus said she hoped the new Labor government can offer what past governments could not.

"Hope, it's sort of a bit of a wistful sort of word, but that's where we're sitting at the moment," McManus said.

Ms Jackson hopes her 95-year-old mother lives to hear the apology promised by the government.

"No-one's ever said 'sorry' to her ever," she said.

"I hope the government step up and hurry up and give that apology so she can have a little bit of peace, and [for] the other parents as well.

"There are not many left. They are all in their 90s."

Jumping through '10,000 hoops'

While Ms Jackson is grateful for the government's lifetime financial support to survivors' healthcare and living costs, she said the process to receive funding was "exhausting".

"It's like, here is your bag of lollies but you have got to jump through 10,000 hoops to get that one lolly – that's what it feels like," she said.

Ms McManus said there are many "grey areas" in the package that required a lot of paperwork and was falling "very, very short of what was recommended by senators".

"There doesn't seem to be any guidelines or clear boundaries of how the package is divided up to best accommodate," Ms McManus said.

Health Minister Mark Butler has told survivors he is prepared to listen to survivors' concerns about the package.

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