...yet the NHS still appear to be reluctant to undertake further research. The article is on the BBC website, and essentially explains how the girl’s M.abcessus infection re-emerged with immunosuppression post transplant. The teen’s mother researched alternative options when traditional antibiotic therapy failed, and faced with the girl dying, Great Ormond Street liaised with the Howard Hughes Medical Institute to come up with a combination of phages to treat the infection. Transplant occurred at 16, and whilst they haven’t eradicated the infection entirely yet, she’s now 17, taking her exams and learning to drive having a made a pretty amazing clinical recovery given at one point she was more or less sent home to die.
The line from the NHS is basically a warning that the success in one patient should not be extrapolated to a more widespread solution, but as many of us here know, countries from within the former USSR have been working with phages for the better part of a century now. As I understand it, the only reason Western European medicine stopped pursuing phages was due to the advances in antibiotic therapy, but surely with antibiotic development effectively stalled and the growing resistance issues phages are a reasonable line of research to solve the problem? Am I only one that fails to understand why it’s STILL not being pursued further by the NHS et al.? Am I missing something? 🤔
I asked my consultant about this after the programme by Angela Rippon. She said that she would investigate what was going on and wrote to my GP saying the same. No news last visit ( although we did have lots to go over and she is very very busy on a daily basis with so many patients) From searching myself I have found a couple of places in the UK doing very prelim stuff in mice but nothing progressive. There are a couple of centres in the US further down the line and the US navy has an enormous store of the viruses.
I suspect that one of the problems lies in the fact that antibiotics are broad spectrum,each one targetting several bacteria whereas phages have to be targetted at exactly the individual bacteria. You really would think though, that given the dire future for antibiotic therapy, UK medics would be cooperating with and learning from the Eastern Europeans to develop phages for mass use. Of course, none of this takes into account the role of drug companies, who, in the end, are finance driven when it comes to developing new drugs.
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I haven’t seen the Angela Rippon piece myself, although I’ve heard about it, and I’ve been following the phage work since I first stumbled on a paper mentioning it last year. It’s the apparent, total lack of willingness to explore it further that I don’t get it, almost to the point of the NHS seeming actively resistant. This combination of phages was completely untested (to be honest, I’m amazed the mother managed to get GOSH to pursue it to some extent given the attitude towards phage therapy here) but it has unequivocally saved the girl’s life; if they don’t have the funds to research from scratch, surely there is enough ‘anecdotal’ evidence of effectiveness to warrant proper clinical evaluation of existing treatments from Georgia alongside the ongoing clinical trials in the US? I’m not casting aspersions on the Georgians, but even if there are issues there, I would hope that the clinical data coming out of the US should be robust enough. When the statistical outcomes of chronic respiratory infection are so poor in many lung conditions, it seems entirely counterintuitive if not actually insane to me to dismiss something out of hand that could potentially extend lives if not save them entirely, AND potentially reduce the long-term cost burden on the NHS.
I’m not a big pharma conspiracist in the slightest, but increasingly I find myself wondering about the financial element of drug development and manufacturing. I’m not saying there’s a cure for cancer out there being kept secret, but there are enough issues and inconsistencies to make me cynical. And we all know treatments are being withheld from UK patients purely on a cost and cost-effectiveness basis. The reality is that many of the drugs actually cost a pittance to make comparatively and are orphan drugs repurposed, so the drug companies haven’t even had to pay out for the development to begin with, but continue to demand exorbitant prices as if they’d engineered them from scratch...
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I couldn’t agree with you more on everything that you say. As a long term lungy survivor It certainly seems to me that the government would rather that we with lifelong lung conditions would just quietly die off. This of course was the case in the fifties when I was a child. Most children with extensive bronch and probably all cystics just dropped off the tree.The only reason that cystic fibrosis has a high profile, together with treatment and drug development is because they managed to put together a powerful group and raise much of the money themselves. We bronchs and our consultants have tagged on, trying to catch the crumbs that drop from the cystic table if and when governments will pay for them. It is disgraceful that there are drugs available specifically for the dna componant of cystic fibrosis (think I am correct on that but you will know which one) and government are denying them to patients.
Where is the common sense? Where is the humanity?
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There doesn’t seem to be much common sense involved in the NHS at all from where I’m standing.
I know that the bronch community in particular have it really bad comparatively in terms of access to medication when you look at the standard treatments available to the cf community, and I’m not trying to draw a comparison or belittle that because it’s ridiculous and actually boggles my mind, but there is an emerging parallel in the increasing disparity within cf. Where precision medications like Ivacaftor and Orkambi are being engineered for specific mutations, there is a small percentage of people with cf who are effectively being ‘left behind’. My daughter is one of them, both of her mutations in the top 28 screened for in the UK, but both rare within that being shared by just 80-odd other cf patients for my mutation and around 230 for the ex’s. As a result of that, currently there isn’t a single precision medicine on the market or in development that directly benefits her, and when you ask what’s happening with gene therapy - the holy grail that would benefit everyone with cf, not just those with the ‘right’ mutations - the answer is the same as before she was born eleven years ago: we’re ‘at least a decade away’. It’s turning into a very long decade, but I am grateful that we don’t have the difficulties you guys do in accessing treatments whilst being outraged on your behalf at the same time.
I’m guessing you’re referring to Orkambi regarding the access to meds in cf? The ongoing issue there is an interesting one, in part because the clinical results for it aren’t actually very good (the mean increase in fev1 being only between 2 and 4%), but the other drugs tied into the deal also manufactured by Vertex are much more effective/promising and could benefit up to 90% of patients in the UK in total. To put the lung function increase is perspective, Ivacaftor, one of the two separate drugs in Orkambi which only works for certain gating mutations when used on its own, has an average fev1 increase of 10% in both adults and children. It’s not really being covered accurately by the mainstream media in my opinion, because I don’t think NICE and the UK government are actually being unreasonable: for access to Orkambi, which about 3000 of the 10,000 UK cf patients would be eligible for, Vertex want £100k per patient per year. Orkambi is NOT cost-effective enough to warrant a bill of £300m a year off the clinical data, it doesn’t reduce the treatment burden, decently increase lung function or prevent long-term decline to a degree that would make it sustainable for the NHS. NICE have made a counter offer of £500m over 5 years for access to all of the Vertex drug developments for CF, but Vertex have turned that down because they are getting the £100k per patient per year from all the other countries where Orkambi is currently available. Vertex argue that the cost is justified in this instance because they have developed these meds from scratch, and why would they lower the price when countries with (mostly) privatised healthcare are prepared to pay what they’re asking?
That conveniently kind of brings me full circle: cf is primarily life-limiting as a result of lung damage from recurrent and chronic infection. If we can more effectively treat bacterial infection across the board, whilst avoiding the issues of antibiotic resistance that are threatening to doom us all, then surely that’s half the battle, if not a lot more? Less infections, less lung damage, longer, more pleasant lives all round regardless of the underlying diagnosis or our ability to cure it, and phages would seem to be a viable possibility that lots of people seem determined to ignore!!
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So very interesting Charlie_G. The heirerarchy within cf must be frustrating as well as heartbreaking for some.
Call me a cynic if you wish, but I have the feeling that it all boils down to cost - there isn't enough margin between what it costs, and the profit margin.....? Pain, suffering and death do not even come into the equation! 😡
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Never ending respiratory infections
Bereavement and loss.
When the drugs don’t work
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