‘World's oldest baby' is born from embryo frozen before either of his parents even started school

Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Sydney Morning Herald

8 hours ago

Sydney Morning Herald

Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Australia's health ministers last month ordered a rapid review of the nation's assisted reproductive sector following a series of bungles and scandals, to determine if greater regulation can increase the safety and transparency of fertility clinics. Victoria is leading the national review, and a Victorian government spokesperson confirmed IVF add-on services would be included in consideration of existing or potential new legislative framework. 'A dedicated team has been established to undertake the review and will report back within three months,' the spokesperson said. Australia has the fifth-highest rate of IVF, fuelled by the strength of the commercial fertility sector and Medicare rebates with broad eligibility criteria that mean patients can continue coming back for cycles regardless of their chances of success. Four out five women accessing IVF also use add-on services during their treatment, which can greatly add to their costs as well as the profits and marketability of the clinics, but which may not increase the chances of success. An analysis of the non-core services being offered to Australian fertility patients by University of Melbourne researchers, prepared for this masthead, highlights the high costs and lack of evidence supporting services commonly upsold to potentially emotionally vulnerable patients. It reveals 44 treatment types ranging from free to $5000, and taking in everything from vitamins to plasma being injected into ovaries, genetic testing of embryos, injecting a single sperm directly into an egg and endometrial scratching, have little to no influence on the chances of having a live birth, pregnancy or miscarriage. Loading The analysis follows the launch of the Evidence-based IVF website in April, which is led by the University of Melbourne's Dr Sarah Lensen as an effort to better inform people undergoing IVF of the unproven add-ons. 'There are research articles out there on these different add-ons but the quality, broadly speaking, is really poor. Different providers are willing to draw the line in different places in terms of how much evidence they think they need before they're willing to offer or recommend something,' Lensen said. 'Sometimes there's a cost for special IVF conception vitamins or whatever, but they're probably pretty low risk, and they're not as big of a deal. 'Down the other end of the spectrum, there's the super-expensive $1000 treatment options that also come with risks because they're playing with patients' immune systems or injecting things into their ovaries that we don't really know what's going to happen. 'A lot of the add-ons that get offered slip through the cracks in terms of the existing regulatory system.' In Deanna Carr's case, she underwent two normal but unsuccessful cycles of IVF before adding steroids, blood thinners, aspirin and clexane during two further cycles. Determined more had to be done, Carr followed advice from online fertility forums and moved to one of Australia's largest clinics to seek out a specialist known for pushing the envelope. 'There's lots of conversation about which specialists to see, because these specialists are willing to be a lot more experimental – and, when we say experimental, it is literally meaning experimental. 'They're willing to try more add-ons, regardless of how inclined the research is to say that it doesn't work.' Tests at that clinic found Carr had a partial DQ Alpha gene match which may make her body more likely to attack or reject an embryo, though research suggests treatment for it does not significantly improve IVF success rates. To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. They proposed a $5000 EMMA and ALICE test which would have seen Carr undergo another full IVF cycle but, rather than try for a pregnancy, the doctors would take a biopsy of her uterus to see if bacteria were present that might be impacting her pregnancies. If it found abnormalities, Carr was then to be prescribed cefalexin – a common antibiotic used for infections and cheaply available on the Pharmaceutical Benefits Scheme. 'It's what the doctor would give you for a sore throat. Why would they make me pay five grand for it? Why not just give me the medication?' Rather than spending $12,000 for another add-on-laden IVF cycle, Carr consulted the Evidence-based IVF site and realised there was little science to support the proposed treatment, then switched clinics to undergo a traditional – and successful – cycle. 'You get persuaded to add on because you obviously want it to work, and you're already spending so much, so this can financially tip you over the edge,' she said. 'A lot of these IVF companies know that. It does feel really unethical [because] a lot of the time people aren't being provided with proper information around the add-ons that are being suggested and the efficacy around them. And people are really desperate, so they'll just keep saying yes to things.' A Macquarie University professor of bioethics in the discipline of philosophy, Wendy Lipworth, last year published a study based on interviews with 31 doctors working in assisted-reproductive technology to see what their 'moral justification' for using add-ons was. The specialists' responses revealed evidence and innovation was not the driving consideration in many instances, and that regulatory reforms to only allow the use of unproven treatments in the context of formal scientific evaluation might be required. Lipworth said add-ons were often marketed as a point of difference between clinics, which may undermine individual doctors' ability not to offer them for patients. As a result, she believes any new regulation would need to focus on the clinics and what they are offering, rather than individual doctors wanting the best for their patients. 'Generally, there should be some expectation that they might at least be beneficial, even if there's no good evidence for it. That's a real balancing act,' Lipworth said. 'In fertility, the balance is going a little too far in the direction of too many things being offered without enough evidence. 'There might be room for some more regulation of how the products are advertised, how patients come to know about them, what they charge for them and so on. But the very act of using them is not in and of itself in any way unethical. 'What really matters is that people know that they're getting treatment for which there is not good evidence, and that they are able to make informed decisions about whether or not to use them. Loading 'That doesn't mean that anything goes and that patients should necessarily be able to walk into a doctor's surgery and say, 'my friend saw this on Facebook', or 'my friend used this and she got pregnant, therefore I want you to offer it to me'. 'There is still a duty of care to offer things that you, at the very, very least, are absolutely certain won't do harm.' Add-ons are not the only factor separating clinics, or the fees they charge. Lensen said premium clinics typically provide continuity of care so patients always get to see the same specialist and nurse, as well as improved customer service, which may not be provided at low-cost or public clinics. And, in many cases, the proliferation of add-on services is often more patient-driven than due to marketing by doctors or their clinics – which is why Lensen believes reforms are even more important, so regulators can step in when doctors fail to uphold their responsibility to dissuade patients from treatments that may not be in their best interests. 'The evidence is not that strong, but the patients are asking for it, or the clinic down the road is offering it, and so they end up using it too. But then when the research community does come out with robust evidence later, I think they do act,' she said. 'So it would be nice if we said from 'now on, no more offering a high dose of corticosteroids to patients. If you want to do that, they can take part in a placebo controlled trial'. 'A lot of the time, though, regulations are not aligned with the commercial interests of whoever they're trying to regulate – that's the whole reason we need them.'

The Age

8 hours ago

The Age

Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Australia's health ministers last month ordered a rapid review of the nation's assisted reproductive sector following a series of bungles and scandals, to determine if greater regulation can increase the safety and transparency of fertility clinics. Victoria is leading the national review, and a Victorian government spokesperson confirmed IVF add-on services would be included in consideration of existing or potential new legislative framework. 'A dedicated team has been established to undertake the review and will report back within three months,' the spokesperson said. Australia has the fifth-highest rate of IVF, fuelled by the strength of the commercial fertility sector and Medicare rebates with broad eligibility criteria that mean patients can continue coming back for cycles regardless of their chances of success. Four out five women accessing IVF also use add-on services during their treatment, which can greatly add to their costs as well as the profits and marketability of the clinics, but which may not increase the chances of success. An analysis of the non-core services being offered to Australian fertility patients by University of Melbourne researchers, prepared for this masthead, highlights the high costs and lack of evidence supporting services commonly upsold to potentially emotionally vulnerable patients. It reveals 44 treatment types ranging from free to $5000, and taking in everything from vitamins to plasma being injected into ovaries, genetic testing of embryos, injecting a single sperm directly into an egg and endometrial scratching, have little to no influence on the chances of having a live birth, pregnancy or miscarriage. Loading The analysis follows the launch of the Evidence-based IVF website in April, which is led by the University of Melbourne's Dr Sarah Lensen as an effort to better inform people undergoing IVF of the unproven add-ons. 'There are research articles out there on these different add-ons but the quality, broadly speaking, is really poor. Different providers are willing to draw the line in different places in terms of how much evidence they think they need before they're willing to offer or recommend something,' Lensen said. 'Sometimes there's a cost for special IVF conception vitamins or whatever, but they're probably pretty low risk, and they're not as big of a deal. 'Down the other end of the spectrum, there's the super-expensive $1000 treatment options that also come with risks because they're playing with patients' immune systems or injecting things into their ovaries that we don't really know what's going to happen. 'A lot of the add-ons that get offered slip through the cracks in terms of the existing regulatory system.' In Deanna Carr's case, she underwent two normal but unsuccessful cycles of IVF before adding steroids, blood thinners, aspirin and clexane during two further cycles. Determined more had to be done, Carr followed advice from online fertility forums and moved to one of Australia's largest clinics to seek out a specialist known for pushing the envelope. 'There's lots of conversation about which specialists to see, because these specialists are willing to be a lot more experimental – and, when we say experimental, it is literally meaning experimental. 'They're willing to try more add-ons, regardless of how inclined the research is to say that it doesn't work.' Tests at that clinic found Carr had a partial DQ Alpha gene match which may make her body more likely to attack or reject an embryo, though research suggests treatment for it does not significantly improve IVF success rates. To address the issue, a team of specialists gave Carr lymphocyte membrane immunotherapy, in which up to eight vials of blood were taken from her husband so his white blood cells could be extracted and then injected into her arm to correct her immune system with material that is genetically matched to their embryo. 'It's like weird blood brother stuff, and quite expensive,' Carr said. She was given a toxic cocktail of drugs including naltrexone and tacrolimus, which are more commonly used to treat cancer, as well as an intralipid infusion to 'knock out' her immune system. Added together, this cycle cost more than $8000. 'It didn't work. It ended up the same way all our other cycles ended,' she said. Carr's specialists then offered to step up the add-on treatments even further. They proposed a $5000 EMMA and ALICE test which would have seen Carr undergo another full IVF cycle but, rather than try for a pregnancy, the doctors would take a biopsy of her uterus to see if bacteria were present that might be impacting her pregnancies. If it found abnormalities, Carr was then to be prescribed cefalexin – a common antibiotic used for infections and cheaply available on the Pharmaceutical Benefits Scheme. 'It's what the doctor would give you for a sore throat. Why would they make me pay five grand for it? Why not just give me the medication?' Rather than spending $12,000 for another add-on-laden IVF cycle, Carr consulted the Evidence-based IVF site and realised there was little science to support the proposed treatment, then switched clinics to undergo a traditional – and successful – cycle. 'You get persuaded to add on because you obviously want it to work, and you're already spending so much, so this can financially tip you over the edge,' she said. 'A lot of these IVF companies know that. It does feel really unethical [because] a lot of the time people aren't being provided with proper information around the add-ons that are being suggested and the efficacy around them. And people are really desperate, so they'll just keep saying yes to things.' A Macquarie University professor of bioethics in the discipline of philosophy, Wendy Lipworth, last year published a study based on interviews with 31 doctors working in assisted-reproductive technology to see what their 'moral justification' for using add-ons was. The specialists' responses revealed evidence and innovation was not the driving consideration in many instances, and that regulatory reforms to only allow the use of unproven treatments in the context of formal scientific evaluation might be required. Lipworth said add-ons were often marketed as a point of difference between clinics, which may undermine individual doctors' ability not to offer them for patients. As a result, she believes any new regulation would need to focus on the clinics and what they are offering, rather than individual doctors wanting the best for their patients. 'Generally, there should be some expectation that they might at least be beneficial, even if there's no good evidence for it. That's a real balancing act,' Lipworth said. 'In fertility, the balance is going a little too far in the direction of too many things being offered without enough evidence. 'There might be room for some more regulation of how the products are advertised, how patients come to know about them, what they charge for them and so on. But the very act of using them is not in and of itself in any way unethical. 'What really matters is that people know that they're getting treatment for which there is not good evidence, and that they are able to make informed decisions about whether or not to use them. Loading 'That doesn't mean that anything goes and that patients should necessarily be able to walk into a doctor's surgery and say, 'my friend saw this on Facebook', or 'my friend used this and she got pregnant, therefore I want you to offer it to me'. 'There is still a duty of care to offer things that you, at the very, very least, are absolutely certain won't do harm.' Add-ons are not the only factor separating clinics, or the fees they charge. Lensen said premium clinics typically provide continuity of care so patients always get to see the same specialist and nurse, as well as improved customer service, which may not be provided at low-cost or public clinics. And, in many cases, the proliferation of add-on services is often more patient-driven than due to marketing by doctors or their clinics – which is why Lensen believes reforms are even more important, so regulators can step in when doctors fail to uphold their responsibility to dissuade patients from treatments that may not be in their best interests. 'The evidence is not that strong, but the patients are asking for it, or the clinic down the road is offering it, and so they end up using it too. But then when the research community does come out with robust evidence later, I think they do act,' she said. 'So it would be nice if we said from 'now on, no more offering a high dose of corticosteroids to patients. If you want to do that, they can take part in a placebo controlled trial'. 'A lot of the time, though, regulations are not aligned with the commercial interests of whoever they're trying to regulate – that's the whole reason we need them.'

Sarah has cancer but her US insurer refused her treatment. She says people are 'giving up'

SBS Australia

a day ago

SBS Australia

Sarah has cancer but her US insurer refused her treatment. She says people are 'giving up'

Watch Dateline's latest episode, Killing for Healthcare, on Tuesday 5 August at 9.30pm on SBS and live on SBS On Demand. When Sarah found out that her breast cancer had spread to her spine, she thought that would be the worst of her bad news. Instead, she discovered the urgent new round of chemotherapy her oncologist had prescribed cost US$17,000 ($26,500) per month. It was an expense Sarah says her health insurer UnitedHealthcare refused to cover. The insurer had responded with the statement: "the requested [prescription] medication must meet specific criteria, and coverage cannot be authorised at this time". It was a huge blow for Sarah. "I was off the treatment for two months, two whole months. And when you have stage four cancer, two months without treatment is scary. "This is life or death for me." The couple have been married since 1991. Sarah describes her relationship with Jerry as 'love at first sight'. Credit: Javafilms Living in the United States, Sarah can only afford private health insurance through the support of her husband Jerry. He works 55-hour weeks in a warehouse and often through the night to bring home US$3,000 ($4,700) each month. He says one-third of his pay goes straight to UnitedHealthcare insurance, which was supposed to cover the cost of Sarah's treatment. Support and sympathy Luigi Mangione has been accused of shooting dead Brian Thompson, chief executive of UnitedHealthcare, on the streets of New York City in December 2024. Authorities allege three words were etched on the bullet casings left behind at the scene of Thompson's shooting: deny, defend, depose. It's a strategy former employee at UnitedHealthcare Nathalie Collins believes is commonly used to reject medical compensation claims. Collins says she processed up to 180 calls per day during her time with the insurer. "We had coaching to be able to deny it [medical claims] … we would have scripts on screen explaining what to say to get them [customers] off the call, or maybe satisfy them." Nathalie Collins worked in the medical claims department at UnitedHealthcare for nine months. She alleges almost three months of her time at the company was spent in training. Credit: Javafilms But it was the death of her former boss that provided the catalyst for Collins to speak out online. "I definitely don't condone anyone losing their life … But also, the people that are working [dealing] with these insurance companies and healthcare systems, they are dying. "In some situations, losing limbs, losing body parts because they didn't get treatment in time … I should not be able to hit a button and make such a determination on someone's life." Led by Thompson, the insurance division at UnitedHealthcare reported US$281 billion ($437 billion) in revenue in 2023 and provided medical insurance to more than 49 million people. The healthcare executive earned US$10.2 million ($15.8 million) in 2023, including base pay, cash and stock grants, according to The New York Times. Mangione recently pleaded not guilty to federal murder and stalking charges, which accuse the 27-year-old of spending months planning the attack. He now awaits further trial and a possible death sentence. US authorities describe Brian Thompson's death as a 'premeditated, cold-blooded assassination'. But some believe, the jury is still out. Credit: Javafilms It's a case that has sparked public protests in support of Mangione. One in four US adults feel "moderate" or "a lot" of sympathy for Mangione, according to a survey by CloudResearch. In separate polling by The Generation Lab, 41 per cent of young people aged between 18 to 29 found the killing 'acceptable". While Mangione's exact motive remains unclear, he has reportedly described the US healthcare system as "parasitic" and exploitative. He also alleges doctors postponed his spinal fusion surgery for years before he underwent the procedure in 2023. 'Unravelling a scam' In 2024, a US Senate committee investigated plans under the Medicare Advantage scheme and found UnitedHealthcare was one of three health insurance companies that intentionally denied claims. Personal finance website Value Penguin also reported the company denied 32 per cent of insurance claims that year — a figure significantly higher than most industry averages. UnitedHealthcare has faced recent allegations by the health outlet Stat regarding the potential use of algorithms to deny care. In December 2024, UnitedHealth Group, which owns UnitedHealthcare, released a statement regarding its history of claim denial. "Highly inaccurate and grossly misleading information has been circulated about our company's treatment of insurance claims," the statement read. "UnitedHealthcare approves and pays about 90 per cent of medical claims upon submission." Dr Elizabeth Potter (pictured, centre) says she is one of the last independent specialists in the Texas and services almost 40 per cent of people with breast cancer in the state. Credit: Javafilms Breast reconstruction specialist Dr Elizabeth Potter believes insurance companies are increasingly fighting "obscene" life-threatening conditions with "technicalities and turns of phrase". The Texas-based expert employs two full-time staff to build medical case files and chase insurance approvals for her patients. "I think we're all figuring out in the United States that navigating insurance feels like we're unravelling a scam," she said. "We've been paying into a system that isn't there when we need it." Deny, delay, defend The US is the only developed country without access to universal healthcare, according to the independent researcher The Commonwealth Fund. Instead, the system is underpinned by public and private health insurance, which may cover some or all of someone's medical expenses. In Australia by contrast, Medicare and the public hospital system provides free or subsidised access to most healthcare services. The US Census Bureau reported that 92 per cent of people in the US had insurance for some or all of 2023. Yet surveys from that year have also found that up to 42 per cent of US adults with private insurance skipped medical care due to cost. For decades, the Mangione name was associated with affluence. The family made a fortune in real estate in Baltimore's Little Italy but have since retreated from public life. Credit: Javafilms New York lawyer Steven Cohen has specialised in class action lawsuits against insurance companies for the past 15 years. He alleges health insurers often employ a similar tactic to the words found on Mangione's fatal bullet: deny, delay, defend. "Maybe the condition will go away. Maybe some cheaper tests emerge … Too often, people die as a result of a delay of diagnosis and treatment," he said. While Cohen calls himself a "capitalist" he also believes the US healthcare system isn't fit for purpose. "Insurance companies are private companies that are responsible for their shareholders, not to their members who get the insurance but to their shareholders to maximise profits." Medical debt is a leading cause of personal bankruptcy in the US. About 6 per cent of adults owe over US$1,000 ($1,600) and 1 per cent of the population have more than US$10,000 ($16,000) in debt due to health costs. 'Free Luigi' protests have been taking place across the US for months. It's expected a crowd of supporters will gather in New York for Mangione's 16 September court appearance. Credit: Javafilms As Mangione prepares for his upcoming court appearance in September, his face continues to be plastered on mugs, T-shirts and flags. Sarah continues to fight her own battle. Thankfully, after three months without treatment, she has resumed chemotherapy. She says a private foundation was moved by her story and offered to cover her medical costs. "I've heard of people losing everything just to pay for their cancer treatment," she said. "But I've also heard of people just giving up … not treating it and stopping treatment."

‘World's oldest baby' is born from embryo frozen before either of his parents even started school

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Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Sarah has cancer but her US insurer refused her treatment. She says people are 'giving up'

‘World's oldest baby' is born from embryo frozen before either of his parents even started school

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Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Deanna tried IVF with the lot. None of the costly, unproven add-ons worked, so she went back to basics

Sarah has cancer but her US insurer refused her treatment. She says people are 'giving up'

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