Wigan: 'My brother was diagnosed with cancer, then I was too'
The brothers, from Wigan, supported each other through the treatment after the initial diagnosis in September last year.Glenn's cancer was found to be aggressive and he immediately underwent hormone therapy and radiotherapy.But Russell's cancer was caught earlier, meaning he could be treated with radiotherapy alone.Russell, a retired air systems engineer and grandfather-of-five, who had his last radiotherapy session in May, told BBC Radio Manchester: "We wouldn't be having this conversation now if it wasn't for my brother."He said he was glad they were both diagnosed so close together "as we've known what each other was going through and could support one another". "Russ came to watch me ring the bell at the end of treatment, and I went to watch him – it was emotional for both of us," says Glenn, a vehicle engineer from Tyldesley.
Their consultant at The Christie NHS Foundation Trust, Dr Maria Serra says it is the first time she has treated two siblings at the same time.She urged men to be aware of symptoms "including peeing more frequently, especially at night, needing to rush to the toilet, and difficulty starting to pee" and to speak to their GP if they are worried.Glenn says he had gone to see a doctor as he "knew something wasn't right".He has since been raising awareness about prostate cancer and nearly two thirds of his colleagues are going to get checked as a result."Men are rubbish at speaking up when something's wrong, and that needs to change," he says.
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Despite living in different countries, it's clear they are close. 'When she got her diagnosis, I said, 'You were Caitlin yesterday, and the only difference is you're Caitlin today with an answer, which is always a good thing,'' Moya says. 'We had the encouragement of knowing that there was a treatment that's curative.' Finding out that it wasn't available for Monachan, however, was like a 'gut punch'. For as long as she can remember, Monachan has suffered a range of debilitating and seemingly random symptoms. Growing up in southern England, she had persistent migraines, fatigue and insomnia, and broke so many bones she was jokingly nicknamed 'Calamity Caitlin' by her family. She bled excessively from minor injuries. 'I bleed a lot because I don't tend to clot,' she says. 'So I'm on my period for 20 days of the month, which is hard.' She is small, but so is her mother, so her parents didn't think anything of it. 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The drug has been in development since the late 1990s, and in such a small community of patients – around 36 people in the UK have Monachan's subtype of the condition – many of that number were actively involved with clinical trials in some way. It is so rare, in fact, that every sufferer in the UK – or their parents or caregivers – can gather for an annual conference run by NPUK. Monachan attended in April this year. 'I got to meet so many other people with the same condition,' she says. 'Unfortunately for me, most of them are actually on treatment on compassionate grounds. That was really frustrating to hear.' There is no guarantee, however, that their treatment can continue. To say that the medicine is expensive is something of an understatement. NPUK estimates that giving 36 patients access to Xenpozyme would cost the NHS £20m a year – about 0.01 per cent of the total NHS budget. The charity says it does not know the cost per patient, but NICE guidelines for the condition state that the medication costs £3,612 per 20mg vial, excluding VAT. It is administered through fortnightly infusions at a recommended dose of 3mg for each kilogram of body weight, so, based on these figures, each treatment would cost nearly £38,000 for a person who weighed 70kg. However, for such a small group of patients, the charity still believes the drug could be affordable if Sanofi, the French pharmaceutical company that produces it, and the NHS could be persuaded to go back to the table. 'We aren't allowed to be involved in the negotiation on cost, but based on the information that we have, we believe that it will cost £20 million a year,' says Mathieson. She describes this as a 'small amount to save people's lives'. She adds, 'I really feel there is no point in developing a drug if the people who it's meant for can't access it. Surely there has to be an answer or an arrangement that can be reached?' Mathieson's eldest daughter, Lucy, was diagnosed with a severe form of Niemann-Pick at five weeks old. 'She didn't meet any milestones. She never walked. By the age of two, she could crawl a little bit, but by the age of two and a half, she'd lost all of those skills. And from then, we were on a bit of a slippery slope to the end, really.' In that time, devastatingly, Mathieson and her husband had two more children who died shortly after birth from Niemann-Pick. Lucy defied doctors' predictions of her life expectancy and survived for two more years, but died aged four. 'As a mum, the only thing that brought me hope was the hope of a treatment or a therapy that was just around the corner,' Mathieson says. 'Of course, our patients and families have lived with that hope – and now they're being left with no choice but 'best supportive care', which means visiting hospitals a lot and experiencing increasingly challenging symptoms that are progressive and severe and will lead to an early death.' When contacted, a NICE spokesman said: 'We were disappointed not to be able to recommend olipudase alfa [the medical name for Xenpozyme], and we realise the decision was disappointing for people with Niemann-Pick disease and those who care for them. Unfortunately, both the company's and the independent external advisory group's cost-effectiveness estimates compared with standard care were over £300,000 per quality-adjusted life-year gained. 'So even when taking into account the substantial effect of olipudase alfa on quality and length of life, the cost-effectiveness estimates are higher than what NICE usually considers an acceptable use of NHS resources for highly specialised technologies.' Francesca Buzer, an Essex-based mother of two boys, has seen the difference the drug can make first hand. Her son Dexter was just one when he became ill. 'As a baby, he was completely fine, and then when he was about one, I started to notice that he had a really bloated belly,' she says. 'I thought he had some kind of food allergy.' When his stomach got so large he was struggling to eat, Buzer took him to the doctors. 'That August, when he was about one and a half, I had him seen, and they said he had an absolutely giant liver and had to go straight to hospital.' Dexter's liver and spleen were so big they stretched from his chest to his groin. 'I thought he would die,' Buzer says. 'It was a very traumatic, scary time.' The local hospital didn't know what was wrong, so they were transferred to King's College Hospital in London to see a liver specialist, and then to Evelina London Children's Hospital. 'They told us that he had Niemann-Pick disease, that it's extremely rare, and that at that point there was nothing available to help him,' Buzer says. 'Everything fell apart. However, there was a drug that's compassionate-use only, and they would have to put a case together for Dexter and wait for that. He was accepted in March 2023, and it changed his life overnight.' Within three months, he had bounced back to being like any other boisterous, energetic four-year-old. He was able to attend pre-school for the first time (before the medication, he wasn't allowed to go because of the risk of infection). 'He's such a friendly little laddie, very cheeky and confident. It's been amazing,' Buzer says. 'I don't know what else to say – it's been completely life-changing.' Dexter's access to the treatment is secured despite NICE's decision not to approve it for us on the NHS. But that has done nothing to assuage Buzer's worries about it being stopped in the future. 'That's scary – really, really scary,' she says. 'There's always a what if. What if it stops? They could stop it at any point if they don't want to pay out for it anymore.' That's what it boils down to, for her, for Monachan, and for everyone affected by this cruel disease: the value of their life being calculated in monetary value. It's now the final countdown. Will they be saved?
