AIBU to think NHS rules on IVF genetic testing are a false economy?

[DodgyGenes]

For background, I've recently found out I have osteogenesis imperfecta type 1 - the 'mild' form of brittle bone disease. I live a fairly normal life, but I'm in my late 20s and I've easily cost the NHS an extra £100k++ on healthcare that's a direct result of having the condition, and that's only going to get higher.

I've been referred for genetic counselling as if I have kids each has a 50/50 chance of getting the same condition.

Apparently if I want pre-implantation genetic testing (basically IVF where they check the embryos DNA before implantation) then

• I could only have 3 cycles, ever
• once I have a healthy baby I'm not allowed another cycle (so no siblings, which seems rather harsh - a limit of 2 would seem much fairer)

On the other hand, they seem to be perfectly happy for me to conceive as many babies as I like, each of which has a 50/50 chance of needing expensive lifetime care like me. As far as I'm aware, I don't have any fertility issues. A cycle of pre-implantation genetic testing costs £10k.

Is it just me or does it feel like this is a false economy?

I don’t agree with IVF being available on the NHS.

However I don’t think this is false economy, you get to have the option and can fund more privately if you want more children and more testing. Nobody needs to have children.

Aren't they the rules for all people having ivf?

I think you're getting off quite well, OP! From what I've read, in most places:

• You only get two cycles of IVF ever, even without pre implantation testing. Some areas don't get any.
• You aren't eligible if either partner has existing children, so they wouldn't fund you got a second anyway.

Got a second= for a second

After the 3 cycles you can just pay for it yourself?

When we had IVF, no genetic issues, we were only allowed ONE cycle, so you are actually very lucky.

If we want a sibling we’d have to fund our own cycle.

It’s pretty standard.

Well I suppose it would be cheaper for them to not offer any IVF at all. Realistically there is nothing they can do to stop irresponsible reproduction beyond offering genetic counselling and abortion services.

Yabu

I'm not sure the analogy to regular IVF works - my point is that they're unwilling to spend £10k on preventing a child being born who will cost them perhaps £250k++ extra over their lifetime.

Purely in economic terms it seems bizarre to be willing to pick up the bill for one but not the other.

It absolutely is a false economy, but that’s the NHS for you.

There are loads of areas where they operate false economies. I’m not sure why, as surely it has occurred to somebody that this is a bad idea? I don’t know whether it’s because of a silo mentality of not caring if it comes out of somebody else’s budget?

I think in your situation I would expect them to find PGD for as long as it takes to ensure a healthy child.

I absolutely disagree with the pp who said ‘nobody needs to have children’. It is a biological imperative, backed up by social conditioning. Some people don’t want children, which is of course absolutely fine. The majority do, and it can be absolutely devastating for those who can’t have them. I absolutely think the NHS should be funding this, OP.

@Trolleshunt It wouldn't make sense to keep funding ad infinitum. Imagine it takes 10 cycles to conceive, that's £100k even before birth when there was only a 50% chance that a baby conceived normally would even have the condition. You have to put a cap somewhere.

We have had ivf recently for fertility problems (yes on the NHS) and are currently expecting. Where we live we are entitled to one full cycle with any surplus embryos frozen and two further attempts at transferring the frozen embryos up to getting pregnant and then after this, we would need to pay for storage and further transfers. We currently have two frozen embryos from our IVF cycle so we could pay for further siblings at some point - but at a lesser cost as it is just the frozen transfer being performed and not full IVF.

If you are entitled to three rounds this is quite good, you could potentially end up with many frozen embryos once tested that would be future siblings. I presume they would genetically test a ‘batch’ of embryos and then freeze them? I think it’s a fair deal X

my point is that they're unwilling to spend £10k on preventing a child being born who will cost them perhaps £250k++ extra over their lifetime

Why is the emphasis and responsibility all on them and not you?

yanbu
there isn't much joined up thinking in the nhs

I'll not claim to be an expert on IVF by any means, but I imagine that if you still haven't conceived after 10 rounds it probably means you have underlying fertility issues anyway? At that point my theory of being able to pop out affected babies at will would start to look doubtful.

Why is the emphasis and responsibility all on them and not you?

I'm not sure what that's meant to mean? My genes weren't exactly a choice I made, like taking up smoking is a choice.

my point is that they're unwilling to spend £10k on preventing a child being born who will cost them perhaps £250k++ extra over their lifetime

Why is the emphasis and responsibility all on them and not you?

Yes, if the nhs is not good enough for you, or doing what you think is fair, then why don't you pay for your own ivf with your own prescreening? Yeah it's shit you need to, but then it's shit I have to pay for my own glasses, its not my fault that I am short sighted, why cant the nhs pay for my glasses? (obviously children/glasses not the same, but its an analogy)

Its your responsibility, and you're lucky to even have the option of 3 cycles isn't it less different in certain locations

I'm not sure what that's meant to mean?

I imagine they mean that you can have either one child that has screened negative for your condition, or you can use a donor egg.

I'll not claim to be an expert on IVF by any means, but I imagine that if you still haven't conceived after 10 rounds it probably means you have underlying fertility issues anyway?

Maybe that's also the theory behind capping you at three rounds?

Comparing the IVF availability to your conceiving without help is silly.

OF COURSE they can't prevent you from having children without intervention, if you wish to do so. There is no way that could ever work.

Yeah it's shit you need to, but then it's shit I have to pay for my own glasses, its not my fault that I am short sighted, why cant the nhs pay for my glasses? (obviously children/glasses not the same, but its an analogy)

Very good point, as a fellow speccy four-eyes.

The NHS wasn't ever intended as a birth (or in this case conception) to grave comprehensive service. People don't contribute enough to it for that to work- most take out more than they put in over their lifetime- which is largely why its days are numbered.

I'm sorry about your health problems, OP.

If you know you definitely want more than one child, could you do all 3 of your cycles and freeze all the viable embryos before attempting to get pregnant? Then you would be more likely to have several attempts. Not sure if they would allow this but it might be worth asking.

Both of my DC are IVF. Neither of them was NHS, as I am a lesbian and you can only have NHS treatment if you can prove that you have tried insemination a number of times. Sperm bank sperm is a grand a shot so we decided to just pay and go straight for IVF. So the NHS system is not ideal for many people. I think ultimately you are lucky that IVF is available at all as the harsh reality is many people die preventably every day as a result of reduced NHS services.

As a side point, given your health condition, do you think you would even be able to cope with 2 pregnancies and births, and raise 2 children? Perhaps one would be more realistic. We are both fit and healthy and find having two children so hard that we often collapse in bed exhausted by 8pm.

Yanbu. It would make more sense for someone in your position to be offered a cycle for each time they want to conceive.

I can see what you mean, and it is a crappy situation to be in, but unfortunately the NHS doesn't have unlimited resources and it's ultimately your responsibility to decide whether to have children or not, whether to pay for further screening etc.

The NHS spends plenty of money preventing children being born, by providing free contraception.

Thanks @CrackOn
Yeah it's shit you need to, but then it's shit I have to pay for my own glasses, its not my fault that I am short sighted, why cant the nhs pay for my glasses? (obviously children/glasses not the same, but its an analogy)

Very good point, as a fellow speccy four-eyes

thanks, I wasn't sure if I was sounding like a bitch, but it could be well, nhs wont pay for me to have glasses, so if i have an accident when I drive, then its not my fault?

I understand your point but most people pay for IVF privately (that I know of anyway). Many areas don’t even offer NHS IVF or they will only give you one or two cycles, I think you’re quite fortunate in your area.

You have the option to save like most couples do and pay for it privately.