Thalidomide survivors have asked the government to reopen a lifetime support program to new entrants ahead of next week’s national apology.
Survivors left with significant birth defects and other health issues have welcomed the apology but hope the government will use the occasion to pledge more help.
Thalidomide was marketed as an anti-morning sickness drug for pregnant women in the 1950s, but caused birth defects including “shortened or absent limbs, blindness, deafness or malformed internal organs”, according to the Department of Health.
Anthony Albanese will deliver a formal apology to all Australians affected by the thalidomide tragedy at Parliament House on Wednesday and a national site of recognition will be unveiled the next day.
The government said 146 thalidomide survivors were registered with the federal Thalidomide Survivors Support Program, although it admitted the exact number of people affected by the drug is unknown.
Lisa McManus, a survivor and leader of the Thalidomide Group Australia, said the bodies of many survivors were “breaking down at hugely accelerated rates” and that more help was needed.
“Old age is creeping up on us, married to significant internal and external disabilities, neuropathy and heart issues,” she said. “The financial support is below par.”
McManus, who was this year recognised with an Order of Australia medal for her advocacy for those affected by thalidomide, runs a support group for fellow survivors. She said news of the apology had brought more people “out of the woodwork”.
“I’m being inundated with people saying they think they’re ‘thalidomiders’. People around the right age, born at the same hospitals where there was a hotspot [of the drug’s usage],” McManus told Guardian Australia.
“Some wanted access to package, some genuinely wanted answers.”
The government’s support package provides financial help with health and daily living costs for survivors, including a lump sum payment, ongoing annual payments, and access to further assistance funds.
The health minister, Mark Butler, said the program, set up under the former Coalition government, was a lifetime support package.
“The government is considering options to support thalidomide survivors who are not registered under the program,” he said.
But McManus was critical that the government had closed the program to new entrants beyond those who had already been accepted, saying the cohort of known survivors had already grown substantially.
“It’s ignorant to think the group we have is all there is. In 2014 we thought there was 35. Now it’s up to 146,” she said.
McManus said cost-of-living issues were also taking a toll, with the program’s payments not currently indexed to inflation, making it harder for survivors to pay bills and expenses. She said many thalidomide survivors experienced difficulty in regulating their body temperatures, meaning they needed to “run our heaters all winter and our air con all summer”.
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“It costs more to have a disability. We’ve been campaigning to the minister to have a CPI increase,” McManus said.
The Greens have backed the survivors’ requests and have called on the government to reopen applications for unrecognised survivors and to index payments to inflation.
Health department officials told Senate estimates last month that a closure date for the program was set “as part of the budgeting decision” that established the fund, and that reopening it would be a government decision.
“We have been contacted by a small number of people since the program closed. We’ve asked if we can keep their details if the program does reopen so that we can contact them again,” said Carita Davis, assistant secretary in the department’s population health division.
Senator Jordon Steele-John, the Greens spokesperson for health and disability, questioned why the program had been closed.
“At a time as momentous as a National Apology to Thalidomide Survivors, it is very likely that some members of the Australian community may recognise, for the first time, that they too had been impacted by thalidomide,” Steele-John said.
“It is vital that there still be a pathway for survivors to get justice, recognition and ongoing support.”
“The Australian Government have made a commitment to right the wrongs and are now ready to apologise. But an apology is only as good as the actions that follow.”
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