Miracle for Australians with Alzheimer's disease as new medication is approved
Australia has approved a new drug for the treatment of early Alzheimer's disease for the first time in 25 years.
The Therapeutic Goods Administration has approved Donanemab for those suffering mild cognitive impairment or mild dementia due to the condition.
While the drug is not a cure for the disease, it slows the progression of Alzheimer's by clearing a build-up of abnormal proteins in the brain which can cause memory loss and impaired thinking.
Donanemab is given to patients as a 30-minute infusion through the arm every four weeks for a maximum of 18 months.
However, the drug has not been listed on the Pharmaceutical Benefits Scheme.
That means Donanemab is not subsidised by the government and can cost patients anywhere from $40,000 to $80,000 a year.
Melbourne grandparents Joel Fulton, 67, and his wife and carer Diane Fulton, 64, said having access to the drug could change their lives.
Mr Fulton spent his life working in the book industry before he was forced into early retirement in 2023 after being diagnosed with early symptomatic Alzheimer's disease the year prior.
'Memory was a huge part of my working life in the book trade. After being in the industry for over 40 years, I became the go-to person in my field,' he said.
'I also needed to memorise and confidently sell new lists from publishers every month. Then, slowly but surely, it was as if my memory was being wiped.
'I was aware of this happening but there was nothing I could do to stop it.'
Ms Fulton, who now cares for her husband full-time, recalled his diagnosis as 'the rug being pulled from underneath him'.
'Joel gradually lost all confidence in himself. He's a very different man now, compared to the man he was prior to his diagnosis,' she said.
'Joel has lost the ability to complete many daily tasks independently. He has had to stop driving, which has had a huge impact on him.
'As his wife and full-time carer, I try to keep things as normal as possible with prompts and boards everywhere to help him, but he relies on me being with him and keeping him on track.'
While Mr Fulton's quality of life has already deteriorated, he and his wife believe access to affordable Donanemab treatment could help them enjoy their golden years.
'If I could access this new medicine, I would in a heartbeat,' he said.
Ms Fulton added: 'We need it now, before Joel's symptoms get much worse, and so that he can get the most benefit from the drug to give us more quality time together.'
Nearly 1.6million Australians are involved in the care of someone living with dementia.
Ms Fulton said it's the 'little things' that make caring for her husband so heartbreaking.
'Joel goes to the shed to get a screwdriver, then comes back empty handed. This will happen four or five times until he throws his hands up in frustration,' she said.
'We'll go somewhere like the shops or the doctor's, and he will think he hasn't been there for years even though it may have been a week or so since we were there.
'It was Mother's Day recently and he thought it was Christmas.
'When we got engaged, we thought we'd be together for 99 years with an option for 99 more. We joked about wheelchair races along the Yarra. We never could have imagined this.'
Around 600,000 Australians are currently living with Alzheimer's disease, with approximately 450,000 of those in its early stages.
General Manager of Lilly, a pharmaceuticals company, Tori Brown believes the registration of Donanemab 'must act as a catalyst for change, ensuring Australia's healthcare system is equipped to support the early detection, diagnosis and treatment of Alzheimer's disease'.
'This must include practical guidelines and new pathways for the early detection and diagnosis of Alzheimer's disease, alongside timely government reimbursement of therapies to support patient access and affordability,' she said.
A reimbursement application to include Kisunla, a brand of Donanemab by Lilly, on the Pharmaceutical Benefits Scheme will be reviewed by the Pharmaceutical Benefits Advisory Committee in July.
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PICTURE PERFECT FAMILY From the outside, the family looked picture-perfect as they lived on their compound in Victoria, Australia. Life at Kai Lama seemed healthy and even advanced for its years; it featured yoga, exercise, vegetarian meals, meditation and education. Ben lived on the remote property and was raised alongside dozens of other children for 13 years and recalls living with 28 other kids at one point. "Growing up, it was Anne and Bill, they were mum and dad; and then there were foster kids, and they were kids of other sect members, who would either come up on weekends or stay there for stints of a couple of years," Ben, told the BBC. "The greatest amount of kids at any given stage was 28," he added. Anne and Bill brought up the children as their own, even dressing them in matching outfits and dying their hair bleach blond to appear like a real family. I loved them in their little smocks and jeans and the long hair and ribbons. Anne Hamilton-Byrne cult leader "We were her children. We were different ages. We'd line up von Trapp style (like) The Sound of Music, which we'd watch, dressed in outfits that matched and that was just what we were asked to do," he told the True Crimes Conversation podcast. "You look back on that and you see it's choreographed. "It crafted a belief that she had these children, which she didn't. We were all either adopted or handed over." In an interview years after the children were finally taken from her, Anne said: 'I wanted them to look like brothers and sisters - I must admit this. 'I loved them in their little smocks and jeans and the long hair and ribbons. It was beautiful - it was lovely to see.' 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She understood that if she could separate us, isolate us, make it so that we couldn't build relationships with one another and punish us, then she could control us," he said. "Anyone who's lived under domestic violence will know the living with fear, the walking on eggshells, the currying favour of those in authority, or the absolute rejection of them, the hatred of them, the love-hate relationship. "It's domestic abuse on steroids," he said. Now, Ben believes Anne was a sociopath or psychopath. "She had this ability to be able to be so warm, so loving, so caring, and yet at the same time so manipulative," he said. 'The Family' Cult Timeline 1968 The Family begins to 'adopt' and acquire children to create a 'master race'. 1974 An official school is set up for the 'master race' children at the Lake Eildon property. 1978 Anne Hamilton marries William (Bill) Byrne and they take the surname Hamilton-Byrne. 1983 Police visit the Lake Eildon property to search for a missing girl. She is not found on the property. 1987 (14 August) Combined police raid on sect property at Lake Eildon. Anne is overseas. Bill is present at the raid but is not charged. The children are removed from the sect and placed into care. 1987 (Oct/Nov) Bill flees to Hawaii to meet Anne. 1987 (12 December) Detective Lex de Man is called to investigate. He learns about The Family. 1989 (about June) Lex de Man writes a report recommending Victoria Police commence a criminal investigation into The Family. 1989 (11 December) Operation Forest Task Force commences. 1993 (4 June) Anne and Bill are arrested in the Catskill Mountains, Upstate New York. 1993 (17 August) Anne and Bill are extradited to Australia. 1993 (31 August) Anne and Bill appear in the Victorian Magistrates' Court, charged with conspiracy to defraud and commit perjury by falsely registering the births of triplets. 1994 In the County Court, Anne and Bill avoid prison and are fined $5000 each. 2001 Bill dies, leaving Anne to lead a diminishing group of followers. 2019 At 97, Anne lives in the dementia wing of a suburban Melbourne nursing home. CAUGHT IN THE ACT It wasn't until 1987 that the cult was finally searched by 100 police officers and the children were rescued. At the time, a 15-year-old Ben was doing his scheduled yoga class when police stormed in. His sister, Sarah Moore, had managed to escape the cult at 17 and headed straight to the police to tell them what was going on. Not taking any chances, police stormed the property and rescued six children, including Ben. While he was reluctant to go with them at first, he soon realised this was his path to freedom. He recalls: 'I think I got this epiphanal moment, realising this is the ticket out of here. So I just I let go, and I went with them." It was only then that Ben found out he was not their biological son and was handed over by his mother Joy, who stayed in the cult as an 'aunt'. At the time, Anne was in Hawaii while Bill stayed on the compound, but he wasn't arrested. Later, he went to New York to meet Anne before the pair were arrested and extradited back to Australia. While many of the children came forward with claims of abuse, both Anne and Bill were only charged with conspiracy to defraud and perjury by falsely registering the birth of triplets. The pair were spared jail and fined just £2,300 each for the crime. Detective Lex de Man, who investigated the case, says evidence of abuse was unable to be taken to court despite multiple victims coming forward. Detective de Man recently told The Age: 'My only regret is she was never held totally to account for the misery she caused to the former cult children. 'I have no sympathy for the woman I consider the most evil person I ever met in my police career.' LIFE NOW Ben moved into foster care when he left the cult, and while lying on his bunk bed with fresh pyjamas and a meal in his tummy, he realised he'd never go back to The Family again "I realised then I (didn't) have to do this anymore, I'm free. I don't need to go back," he said. "That, to me, was when I shut the door." Four decades on, Ben is a proud husband to Rajes and a dad to Ellie and Callum, who live in Perth, Australia. He has written a book on his time in the cult, Life Behind the Wire, and runs the organisation, Rescue The Family, to raise awareness on cult manipulation. In 2019, Anne passed away while in a Melbourne care home at the age of 98 and Ben has reconnected with his biological mother. "What Anne did was evil. She used the name of Christ to give herself validity. She used a belief system," Ben said. "Justice was not done." 9
