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?

No you didn't chose to have this condition. Just as people with infertility didn't chose to be infertile. It's totally shit but nhs has to draw a line somewhere. I'm not saying it's right of wrong. Life's shit lottery.

Crackon 10 cycles wouldn’t cost the NHS anywhere near that much. That’s what the private clinics charge, and it is set at a level that allows them to take a fat profit out of it.

So many people on this thread who have completely swallowed the idea that the NHS couldn’t possibly be better funded.

@Trolleshunt how much would it actually cost then?

YABU
Noone gets siblings through ivf without paying. You're in a fairly fortunate position. No one needs siblings for their kids and presumably you dont want to risk your children having the same condition?

The NHS doesn’t pay for additional testing or procedures that make IVF more effective (other than PGS for specific conditions), so if you’re serious about this it would help to prepare by saving for more private cycles. Even without fertility issues you only have a maximum 20% chance of a bfp after ivf, less with PGS as they will be actively looking to discard embryos with your condition - so the healthiest embryo overall (in terms of implantation) may not be used.

So many people on this thread who have completely swallowed the idea that the NHS couldn’t possibly be better funded

Of course it could be. What's your point?

A lot of people are answering a different question to the one the OP has asked.

I also have a genetic issue which means i'm in a 50/50 scenario, but if my child was born with the condition it would mean, physical disabilities, severe learning difficulties, almost certainly non verbal, very likely to be blind etc and on the NHS i get one egg as "IVF" its ridiculous.

They genuinely want me to "keep trying" until I have a girl (only boys affected) and terminate any boys I get pregnant with. They can do bloods to find out babies sex early but not early enough so it would have to be a surgical abortion.

I also can't adopt due to issues with my past (that won't affect my motherhood but that's the rules).

So basically I have little to no chance of having kids (my own or otherwise). They wont even give me artificial insemination with a donor egg.

@IceCreamAndCandyfloss have you got kids? can you have kids? could you adopt? because util you can't do any of these things when it is all you have ever wanted it is very easy to say "people don't need to have kids"

YANBU. Some posters seem to be missing the point - the OP isn't saying that all IVF should be funded by the NHS, but that it's a false economy for the NHS not to spend £10k now to save £100k plus in the future. The fact that the NHS has limited resources is precisely why it would make sense for them to fund this.

Not funding standard IVF isn't false economy as if a woman doesn't have a child at all it doesn't cost the NHS anything (less in fact). Whether or not you think it's irresponsible to conceive a child when there is a chance of passing on a genetic condition, it does happen and obviously costs the NHS/social care a lot of money. Which is probably why PGD is better funded than IVF in general.

OP I'm having PGD so am in a similar position - as I have several frozen embryos I'm hoping that if I'm able to have one child we'll still have one or two spare, so could use them if we decide to have a second child. That would mean we would pay around £2k just for embryo transfer rather than £10k for a whole new cycle.

It does seem unfair to limit funding to one child - PGD is very different to IVF as it costs around 3 times as much, so is a lot less affordable. Also not as many places offer it (I don't think PGD is available in Northern Ireland or Wales for example), so it's not as simple as going to your local clinic. For one cycle we've spent over a thousand pounds in travel and accommodation costs. People in NI would have to pay for flights etc. on top of that.

"- I could only have 3 cycles, ever

• once I have a healthy baby I'm not allowed another cycle"

Some get none funded. Some get one or two. You may have any number, 5, 12, 22, of embryos on freeze from even just your first/any cycle. They don't chuck them in the bin. They will have all been tested and you will only have to pay to have them transferred back if you want more kids after a successful birth. You will not have to pay for a full cycle unless you have none left. Also several care trusts refer to a clinic, in Nottingham I think it is, that does genetic testing on the NHS even for paying patients.

Your option is take what you're kindly given by your local trust and then do not have children after your ivf cycle attempts are over.

Or just do not have children. You are irresponsible and reckless to ever even consider having them, with a 50/50 chance of them having the same condition.

It is not everyone else's responsibility to pay for your choice to have/want to have children, it is not a 'right'. YABU.

*having them without genetic testing

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)

I don't think that is unfair sorry.

You aren't entitled to having 2 kids on the NHS. After providing you with the means to produce one, they've done their job. If you want another I think you should pay for it yourself.

I agree, OP

My SIL has passed on a genetic condition to her DS2, which means a lifetime of operations, specialist treatments and tonnes of medication.

She isn't eligible for genetic testing IVF because her DS1 is healthy

She is currently pregnant with DC3 who has a 50/50 chance of having the same condition, because she apparently 'needed' a third child.
If it is born with the condition, it will cost hundreds and hundreds of thousands in medical bills.
All to save £10k of IVF

@Andysbestadventure - I think it's unfair to say that people in this situation having children without genetic screening are 'irresponsible and reckless'. I have personally chosen to have PGD, but know others who have a 50/50 chance of passing a condition on who have chosen not to.

It's not a straightforward decision but more of an ethical dilemma. Some people would argue that disabled people should have an equal right to life (think about all the controversy over testing for Down Syndrome), and wouldn't want people with disabilities to be 'screened out' of our population - whether that's through carriers of genetic conditions not having children at all, or by screening embryos. Others think PGD is the most ethical option as it could reduce potential suffering.

I don’t have the exact figures, Crackon, do you?

We can safely assume it would be a lot lower than the costs to the consumer of going private, given that the NHS doesn’t have to factor in a profit, pays its staff less, and usually doesn’t offer the more cutting-edge, expensive, treatments.

It would also be considerably cheaper than the NHS having to treat a genetic condition for life (£200k minimum, given OP must be of reproductive age and the average human lifespan).

@SootySueandSweeptoo

I totally agree that she should take more responsibility than to play those odds, but she won't, and it doesn't help that she is batshit born again christian

But ultimately, the NHS is already on its knees thanks to people who don't take any personal responsibility when eating, drinking, taking drugs etc and yet no one bats an eye lid when we see yet another expensive ad campaign or financial incentive to encourage people to eat their 5 a day, or do a bit of exercise or moderate their drinking, because they lack the personal responsibility to do it.

So in a world where people with genetic condition are also lacking that personal responsibility, does it not make sense to spend a bit of money to also stop them burdening the NHS further..?

She is currently pregnant with DC3 who has a 50/50 chance of having the same condition, because she apparently 'needed' a third child.

This isnt an issue with the NHS, it's an issue with your sister in law being utterly selfish.

Ofcourse it is a false economy. There are 3 options. 1: have one child with PGD funded by the NHS.
2: have more than one child with PGD self funded.
3: have unlimited children who may inherit the condition.
4: don’t have any children at all.

Most people are likely to choose 3 or 4 either due to lack of money and lack of awareness of the NHS funding.

I have a (relatively mild) genetic condition that I have 25% chance of passing on. I did not know but PGD is available on the NHS for this condition.
I did not know it was possible to screen when I had my child (he is too young to tell if he has inherited it). I am surprised that funding is available as it is not a life or death thing. I have a very good life. If it had been life limiting I obviously would have made a different choice. I know a lot of people with the condition who have children and none of them did PGD. They all took their chance. Some do have DC with the condition.

The NHS can’t tell people not to have children. It is not like normal IVF where people may not have a child otherwise, so funding PGD would save money.

Genetic counselling is not really promoted and while people with health conditions could technically have a preconception appointment to plan their pregnancy very few do. Apparently at least half of pregnancies are unplanned anyway.

I don’t have the exact figures, Crackon, do you?

No, I presumed from your earlier confident statement that you worked in the field and knew how much such things actually cost.

You'd have to calculate the average number of cycles a person would request if given unlimited IVF and then balance that with the average cost of caring for someone with the conditions this rule applies to and the average number of babies that would be born with anomalies if conceived naturally by couples at risk of producing such children (the rules affecting OP apply to many inherited conditions, some of which only have a one in four chance of producing an affected child and for some of those conditions, affected individuals will not necessarily reach adulthood). It's not always cut and dry.

If you were to only consider osteogenesis imperfecta (a tad unfair), you could argue that it would be a false economy to deny unlimited IVF. But it would still make more sense to put some form of cap on in case of fertility issues.

I don’t have the exact figures, Crackon, do you?

No, I presumed from your earlier confident statement that you worked in the field and knew how much such things actually cost.

I know, with confidence, that it is likely in the vast majority of cases to cost less than £200k, that’s quite obvious. However, I wouldn’t necessarily say no cap at all, just that 3 is too low, given the success rate per cycle of IVF. I would want people in OP’s situation to have very good odds of having a healthy child, rather than just a pot shot at it.

No I think a lot of you are missing the point; people with infertility (in areas with no nhs ivf provision) have to either pay privately or look at other options to have a family. So people with genetic conditions are in the same boat, they can chose to pay privately or weigh up if they want to pass on potentially life restrictive conditions. But they hold that decision, and it feels like in this thread it's saying that choice is the fault of the nhs. It's not, it's life's shitty lottery. The nhs is not there to provide social justice, though it can assist this by making healthcare free at the point of access.

Everyone has the right to make unwise choices and sometimes the nhs will have to pick up the pieces and costs for that but that doesn't absolve the person of their own responsibilities. Many people are very disengaged with their own responsibility to maintaining their own health and decreasing the burden on public sector, and it's scary and depressing where that's going to end. Most of the ongoing strategic planning is about getting the public to realise that.

I have sympathy for the op, it's an awful situation. Buts not for the nhs to take responsibility for her having a healthy child.

@Siablue you put it better than I could TBH I'm looking at this in a very cold hearted numbers sort of way - which will work out more expensive for the NHS overall - rather than in a far more complex sense of morality.

Having an affected child wouldn't be cruel in the sense that the child would have been better off not born or would have a low quality of life. Three generations of my family have gone undiagnosed (and I eventually pieced it all together using Google before going to the dr & specialist, so it could easily have been more). We've all lead normal, productive lives with full time jobs, relationships, sports (including things like skiing and skydiving), social lives etc. We've just all had what was assumed to be a random set of symptoms, without knowing that there was an overarching condition causing it all.

We've cost the NHS more than average in the meantime, but we've all had / have normal lives. It's not like I'd be creating a child that almost seemed to live in hospital.