Don't often comment on HN but have to point this out as a med student in the UK: the cost-benefit roughly works out for those in favour of giving the therapy when the alternative is a lifetime of coming to hospital 3 times a week for Factor IX infusions, and the additional cost of stays in hospital for bleeds/haemarthroses and the complications thereof. Of course, this also ignores the human cost, particularly the extra care/stress around avoiding cuts/bruises in every aspect of life. In this respect these gene therapies appear lifechanging for those who suffer from the disease. [1]
I will also say I know the team who wrote the guidelines for use of these therapies. I believe they were mostly finished before the infected blood scandal became a big story. Politics didn't come into it.
I don’t dispute the value in treating these people. The group has been treated terribly in the recent past.
I’m in NZ an our system is closely related to the NHS. The funding is where politics comes in and that’s not usually happening at a clinical level, it’s deeply political.
I'm sorry you went through this experience, and I'm glad your son is alive and (hopefully) well.
I don't have the ins and outs of your case. I'm a student, not an obsterician, or neonatologist. That said, I do know delivering a 25 weeker is insanely risky even if perfect care is provided, for both his immediate outcomes and avoiding long-term disability. (80% of babies born before 26w have some form of disability e.g low IQ, blindness, etc [1]).
No sane obstetrician is going to deliver based on a family opinion like that - it is a true last resort. If you were wrong, or less lucky, as horrible as it is to say, your son would not be with us and the surgeon would be out of a job with the "what if" on their conscious (which trust me, all obstericians have anyway).
When your son needed to be delivered, it sounded like he was delivered. Frankly no neonatal respiratory distress at 22 weeks sounds insanely lucky to me; normally before 35 weeks it's a concern.
I can't say if this was a failure of the medical professionals in charge of your care or not, but from the information you've given us it doesn't sound like it. Tens, maybe hundreds of patients will have presented identically to your partner with a far less severe diagnosis. Getting their babies out early could have left them permanently disabled or dead, on the offchance it was percreta/accreta/increta: especially in the absence of definitive imaging, which they did attempt to perform. Medicine is not perfect by a long shot. Managing uncertainty is one of the many skills of senior doctors.
Medicine isn't as simple as a lot of people in this thread think it to be.
No need for sorry, but I appreciate it. I had no intention of implying medicine is simple. Yet the point remains. Doctors cannot read all cases nor memorize all those they do. Unless they have skilled researchers standing by, relevant cases will be missed. If AI (or a human) can analysis that data then its perfectly reasonable to take it into consideration.
In our cases, her condition was deteriorating at a frightening rate. She could barely speak. Under such stress one must also consider the possibility her body giving up and aborting the pregnancy. Doctors had put cameras up and down and ultra sound etc. They were trying to keep her going as long as possible to give baby the best chance. I definitely would not advocate for anyone to make rash decisions in such delicate situations, and of course, my post omitted myriad details for brevity.
The cause was later determined to be the result of a D&C for retained placenta that was performed following the birth of our first child a few years earlier.
This is not the case. Medical school places are up over a third since 2017. We import the amount of doctors we graduate every year, but we haven't meaningfully increased the amount of specialists and GP's we train in over a decade.
There is no shortage of doctors. There is a shortage of consultants/GPs.
The National certainly is.
DOI: Scotsman not in favour of independence.
1: https://en.wikipedia.org/wiki/The_Herald_(Glasgow)#Political...