Thalidomide Survivors 'Gutted' By 'Disgusting' Government Delays In Apologising
Survivors of thalidomide fear they may die before an apology from the government for the "health disaster", slamming six months of silence after a landmark Senate report recommended action.
The use of the drug thalidomide in the 1950s and 60s -- marketed as a cure for morning sickness in pregnant women -- led to thousands of babies born with birth defects and disabilities. Children around the world were born with shortened or missing limbs and appendages, deafness, and organ issues, among other medical problems.
At least 10,000 children in nearly 50 countries were confirmed to have been afflicted -- but nearly half of thalidomide babies died within their first year of life, with some estimates that up to 100,000 children may have been affected.
The federal Senate's standing committee on community affairs handed down a report into support for Australia’s thalidomide survivors in March, making 11 recommendations for government action. Chief among them was a formal apology to survivors, and dramatically increased funding for medical support.
However, six months on from the Labor-majority committee submitting its report, thalidomide survivors say they are "gutted" at the lack of response from Health Minister Greg Hunt and the wider government.
"We feel like just a little tin can being kicked down this dirty road," Lisa McManus, survivor and Thalidomide Group Australia founding director, told 10 daily.
She claimed Hunt's office had told thalidomide survivors -- of which there are about 125 in Australia today -- there would be no official response to the report until as late as mid-2020. The only concession given so far by the minister, McManus said, was a plan for a memorial in Canberra's national arboretum.
This was the last of six "fair" requests survivors had made of Hunt at recent meetings, and it has been welcomed -- but McManus said initial plans put the memorial in a remote "paddock", which would be difficult for survivors in wheelchairs to access.
"It's just a paddock. In 15 or 20 years, it'll look magic... but I had a colleague in a wheelchair, we looked at each other and said, 'We haven't got 20 years left'," she said.
"We're deteriorating at such an alarming rate, most of us will be too immobile or will be deceased."
McManus, aged 56, said medical testing had put her body at the equivalent of an 82-year-old.
Greens Senator Jordon Steele-John, one of the committee members behind the report, said Australia was one of the last governments in the world to be holding out on such an apology and compensation to thalidomide survivors.
"People don't understand the speed at which this condition is taking a toll on their lives. We still don't understand the medical implications on ageing, but we know it rapidly increases the ageing process," he told 10 daily.
"You cannot just wait around while ministers decide what they want to prioritise."
McManus also claimed the memorial garden area had been purchased and planned without survivors' input.
"We're appreciative of the offer and it will be a vision in time, but it won't be in our time... it's just cruel," she said.
The Senate report said the federal government has a "moral obligation" to issue a national apology and compensation owing to the fact "they allowed thalidomide products to be sold in Australia without proper testing and because when Australian governments were informed about the risks of thalidomide they did not do enough to ensure that the products were removed and destroyed."
"We were preventable, and we were government-made," McManus said.
In a statement to 10 daily, Hunt's office acknowledged "the agony of Thalidomide sufferers has been a national tragedy."
"Minister Hunt has already indicated well before the Senate Committee report into thalidomide that the Government would do what no Government has done for the past 50 years, and offer a national apology and establish a national memorial," a spokesperson said.
"We are committed to a national memorial, which is to be determined on advice from Thalidomide representatives."
Hunt's office did not respond to questions about the time frame for the apology and memorial being established. However, upon being informed of Hunt's statement, McManus claimed it was "the first I've ever heard" of any sort of national apology.
"[Hunt] had only ever mentioned himself giving one," she said of numerous meetings with him.
"We want to see it come from the Prime Minister, in parliament."
McManus said current arrangements -- including under the National Disability Insurance Scheme -- were inadequate, and that survivors had endured a lifetime of pain, suffering, indignity and financial hardship. She spoke of one survivor who had to have a total mastectomy in recent years, after severely burning her breast leaning over a hot plate, due to her shortened limbs.
McManus said her limbs forced her to bend uncomfortably for such basic tasks as getting dressed, causing neurological issues that left her "crying at the supermarket, the pain gripping to the point I can't move."
"We need vehicles modified, homes modified, bidets in our toilets, benches lifted in kitchens. One of us has to pay $11,000 for new eye glasses, because she hasn't got ears and has magnetic plates in her head to place the glasses," she said.
"The NDIS can help us, but not enough."
Pressure is also coming from inside Parliament House, with Labor and the Greens calling on the government to take action.
Labor frontbenchers Chris Bowen and Bill Shorten accused the government of "prolonging [survivors'] suffering".
Hunt's office told 10 daily that thalidomide survivors "are estimated to have received a combined total of $140 million from the Australian distributor of thalidomide (Diageo Australia) via various court settlements and other types of payments", and are also eligible for disability payments.
"On top of these payments, the Minister has written to Diageo seeking further lifetime compensation for victims," his office said.
McManus said survivors were grateful for the help they've received, but are calling for more action.
"I'm gutted, despondent, battered," she said.
"I'm bloody sad. I can't pick the word and still remain a lady. We're asking for nothing more than what other countries have afforded survivors."