Calls are escalating for a royal commission on the distribution of an experimental drug among Australian hospitals during the 1970s that has been linked to a crippling disease.
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Diagnosis of adhesive arachnoiditis, which can result in paralysis, ongoing pain, bladder and bowel dysfunction and other symptoms, often occured years after a medical procedure known as a myleogram that involved the injection of an oil-based medical dye into patients' backs.
Sunday Canberra Times revealed last week the drug Pantopaque - one such medical dye - was illegally sent to hospitals around the country and used without appropriate approval between 1974-1978.
The Australian Arachnoiditis Sufferers Association, NSW, which represents hundreds of people with the disease has backed calls for a royal commission, saying answers were needed as well as compensation for those struck down with the condition.
"This changes your whole life and your family's life and it makes you so tired,'' vice-president of the association Ruth Ahrens said.
Ms Ahrens said some sufferers needed modifications to their homes, like ramps for wheelchairs and compensation could pay for those changes.
"I think there needs to be more explanation given to patients about risks before procedures are done. I know that with my myleogram I signed forms but at no time did I have explained to me this could happen.''
Ms Ahrens said a water-based dye was used during her procedure and was followed by surgery.
The Prime Minister's office has not responded to repeated inquiries about whether Mr Abbott would consider ordering a royal commission.
Canberra bricklayer Joern Hagemann, who was injected with oil-based dye after a construction accident in 1978 and developed adhesive arachnoiditis, used Freedom of Information laws to obtain documents that revealed how the dye was allowed to be used on him and thousands of others.
Old health department records brought to light by the FOI request showed Pantopaque, produced by Lafayette Pharmacal, was not approved for general distribution when it was sent to more than 50 hospitals and medical clinics. It was brought into Australia on a restricted permit that allowed it to go to just four doctors practising at three Melbourne hospitals and one Perth hospital between 1974-1978. Mr Hagemann said a royal commission was warranted.
The drug was not approved for general distribution by Cook Incorporated in Australia until October 1979, before authorities were aware of its full potential impact.
Retired Throsby federal MP Jennie George called for action in 2002, telling parliament that adhesive arachnoiditis was estimated to have affected 60,000 Australians.
A round table was held by the House of Representatives Standing Committee on Health and Aging in 2012. It had no power to order compensation but recommended that GlaxoSmithKlein, which also produced an oil-based medical dye named Myodil which has been linked to cases of adhesive arachnoiditis, set up a charitable foundation to assist sufferers of the disease.
GSK rejected the idea. The company told the committee in 2012 that court action brought against the company in Australia in 1999 was dealt with by way of confidential settlements, without the drug company making any admissions of guilt.
