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?

so what about someone who wont pay their own $x (or £x) for prevention, after having had $/£xxx spent on them already out of your tax $/£

Do you imagine that I'm not a taxpayer because I have a health condition? You'd be wrong. I contribute to the NHS just like every other full time working person.

I wasn't commenting about if you paid tax or not

When prevention is better and cheaper than cure (or treatment) it makes sense to do it from a purely financial point of view. The Return on Investment is fairly clear for all to see. …….. When the same is applicable for PGD, limiting it so artificially seems harsh and a false economy.

but you don't have to have 2 children, you don't even have to have 1, but you are being offered the option. Where is your own responsibility? You're the one saying you might have a child with a disability, but you are not willing to put your own money towards avoiding it?

Why is it up to the NHS to pay for you to avoid a child with disabilities? The nhs will pay for 3 goes, (less if you have a child) they're not leaving you with nothing. Why don't you pay for it?

When prevention is better and cheaper than cure (or treatment) it makes sense to do it from a purely financial point of view. The Return on Investment is fairly clear for all to see.

What evidence is there that there would be a ROI for multiple cycles to have any number of non affected children of any genetic condition? Clearly it is for you OP but are they meant to judge it on a case by case basis? Not all genetic conditions are going to cost the NHS significant amount of money over a course of a lifetime. I think a PP gave an example.

Can you imagine the uproar..

• Yes you can have multiple PGD cycles as your children would cost us more money if they are born with x condition.

• Sorry you can't as there wouldn't be a ROI on your children.

I've put it crudely but that's essentially what we're discussing.

As a tax payer I begrudge a system that refuses to spend $x for prevention but will happily pay $x times 100 for treatment
Because the NHS assumes a certain level of individual responsibility.

You seem to assume that everyone with a genetic disorder will go on to have children with a high risk of having the disorder and then assume these will cost more than a child without the disorder (who could still cost the nhs a lot for other reasons).

People keep saying the NHS assumes people will take responsibility. Out of interest is this written down somewhere, or have the calculations just never been done and the issue not framed in this way and people are just filling in the gaps?

I haven’t read the whole thread so apologies if this has been settled but....

It’s not an issue of cost/efficiency etc but one of cash flow.

Let’s assume from 1st January 2020 there are no more babies born with OI1 and instead because the NHS has funded unlimited IVF cycles until every adult with the defective gene has 2 unaffected babies born. That is what you are suggesting I think.

The money isn’t saved from having no OI1 patients until the numbers significantly reduce. Which would probably take 25 years or so. Maybe more if depending on what age the most expensive treatment happens. Meanwhile the NHS has spent millions, probably tens of millions and maybe even hundreds of millions (depending on prevalence of this condition) on IVF.

So yes in isolation over one persons lifetime it would be more cost effective. But where is the investment coming from to release the savings 25+ years later?

Oh and that is one condition. There are many more that have a huge financial impact on not only health but also social care. The same analysis would need to be done with all other conditions.

You seem to assume that everyone with a genetic disorder will go on to have children with a high risk of having the disorder and then assume these will cost more than a child without the disorder (who could still cost the nhs a lot for other reasons).

No, I don’t assume all will but many will. It’s just human nature. Also, as someone who worked front line in the health system for nearly 30 years I’m telling you the majority of people don’t exercise personal responsibility, just doesn’t happen. I’d be very surprised if the figures didn’t stack up in favour even if only 1/4 of those had kids and of those only 50% were affected with whatever issue. Once you add up health costs for someone with health needs requiring lifetime interventions and supports it’s an absolute shitload.