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?

Isn’t osteogenesis imperfecta type 1 a dominant condition? So only one copy of an allele is enough for kids to inherit the condition. If so it could take a lot of IVF cycles to find an egg that doesn’t contain it (if it’s possible at all). Egg donation may well be offered.

Okay so I do sympathise. I have a genetic condition which causes recurrent miscarriage. I can have a children but with every child that makes it to term, there is a chance that they will also go through what I have in terms of the losses. We chose to carry on trying naturally as my condition is not life limiting at all, the only negative effect of it is the higher risk miscarriages.

I think it's great that the NHS funds IVF and I hate the argument that they shouldn't however, I agree that it does need to be capped somewhere. I also don't agree that they should fund a second child just because you believe it's better to give your 1st a sibling. I'm an only child, there is nothing wrong with it and I knew when we started TTC that I was only ever going to try for one because I never wanted to go through all that again.

A lot of people don't get IVF funding at all or only get one or two rounds. You are actually incredibly fortunate to be offered what you have. It may seem unfair but it's the system we have and you are actually one of the people who is benefitting the most (by being offered 3 rounds instead of 1).

@Teddybear45 It's dominant. I'm awaiting genetic counselling, but I'm told it's a 50/50 risk of passing it on to any child.

The thread was about the false economy aspect of it all - being willing to shell out for lifetime care, but not £10k in preventative care. The thread isn't about the comparison with infertile couples, because if infertile couples never conceive then it doesn't cost the NHS anything.

It would be a bit like if polio vaccines weren't available on the NHS but they were quite willing to pay for lifetime care for those affected. Or not being willing to pay for a preventative mastectomy for someone with the BRCA gene but being quite willing to pay for chemo and a mastectomy when an affected woman predictably develops breast cancer.

Prevention is better than cure, as the saying goes.

I agree with you OP

If you have 2 kids it is likely one of them would have the condition and cost the NHS a lot lot more than the cost of prevention.

However unless it's an official public health campaign then the NHS is only concerned with immediate funding (and I understand why) and doesnt have the cash for prevention rather than cure even when it makes long term sense.

I think people that are saying you're lucky to get ivf because not everyone does, is missing the point.

For unexplained fertility, say, the NHS are losing money by funding IVF. Purely in economic terms, there is no benefit to giving IVF. That's not the case for you, they would be saving money overall as IVF prevents an illness that is otherwise very likely

It would be a bit like if polio vaccines weren't available on the NHS but they were quite willing to pay for lifetime care for those affected. Or not being willing to pay for a preventative mastectomy for someone with the BRCA gene but being quite willing to pay for chemo and a mastectomy when an affected woman predictably develops breast cancer

I do get the argument but I think it's hard to compare these sorts of things. These are diseases which a person has no control over. You would be choosing to conceive a child knowing it could need lifetime care. Their argument I suspect would be that you don't need a child and you certainly don't need more than one which they are trying to help you obtain.

I actually do believe they should do what they can to help you have a child. But I think it has to stop there. You don't need more than one child. I know technically you don't even need one but I understand more than some the pain mentally that it can cause going through something like this.

@DodgyGenes - I am infertile due to several inherited conditions (PCOS, hashimotos and clotting disorders all of which tend to run in Indian families). No offence but why should your inherited condition trump mine for IVF? Admittedly the NHS cycles are crap so it’s possible you have all these conditions too but just won’t be tested for them, but arguing that some conditions are worth NHS ivf and others aren’t is dangerous. Most women who use IVF tend to work full time (and can often be high earners), pay taxes, and who (prior to their experiences trying to conceive) have rarely used NHS services previously - for the NHS giving these women IVF (as they are the people, theoretically, the NHS would want to reproduce) and giving women with ‘expensive’ genetic conditions contraception would be the most cost effective thing to do. Thankfully they don’t do this!

Just adopt.

Just adopt

Genius

@DodgyGenes I completely agree it's crazy. I also have a 50:50 chance of passing a genetic condition to my child and the decision whether to risk passing it on via a natural conception; or go with the PGD IVF process was very difficult. I am still not sure I've made the right choice (natural conception). I can have the CVS at 11 weeks and if it's positive I can choose to terminate.

It was not a decision we made lightly though. The PGD IVF process is more complex than standard ivf and the time scales and chances of success frightened us.

I agree. I have a chromosomal abnormality like @Juiceit and I don't know how it works now (this was nearly ten years ago) but you had to get a clinical genetics unit to apply for IVF funding on your behalf and it was made clear to me that in my area of London I was unlikely to get even the one cycle of IVF with PGD. I strongly suspect that as soon as I indicated that I would have an abortion if I conceived a sick baby, they lost my application at the bottom of the pile.

I mean, lots of people don't want IVF funded on the NHS because it's a "lifestyle" thing, not an actual need, and I guess that is up to them... I would expect people then to self fund for things like when my other half tore his ACL skiing last winter, because he didn't have to go skiing. I mean how narrow do you want to go in your definition of what activities you should be able to do in a normal life? I feel like while having children is not something that everyone wants to do, still it's pretty central to the experience of being human, and I suspect that there's a bit of misogyny in the idea that it's an optional extra.

@Teddybear45 is PCOS something that can be genetic tested for?

Sorry @juiceit my post sort of looks like I'm arguing with you, I'm not, that second bit wasn't addressed to you it's just my random musings...

I am infertile due to several inherited conditions

Because the PGD programme isn't designed to treat infertility.
That's what regular IVF is for

The PGD programme is designed for fertile couples who would otherwise not need IVF, to stop them passing on inherited conditions, by screening them out using PGD. None of the conditions you've listed can be screened using PGD.
It states very clearly in the PGD guidelines for my local CCG that infertile couples don't qualify for the PGD route...

Oh sod off @123chocolate. Yeah, people getting over the grief of realising they won't have children that are genetically theirs and who may have no experience of looking after kids plus kids who've lost their birth families and may have experienced significant trauma are just a match made in heaven eh?

I don't know.
I have OI type1, diagnosed after dd1 was diagnosed. Turns out nearly all my numerous health issues over my life were symptoms lol.
I have 4 DC's, all pre diagnosis. There's a good chance 3 have OI. For mild conditions like this I'm not sure how I feel about being screened away, for them or myself. DD1 (who is currently in a leg cast) has been told she will have genetic counseling when she's older. However my DC who we really don't think has OI has a very serious condition and is waiting for more testing and diagnosis for other SEND issues. He has spent much more time in hospital and been so much more poorly than any of the others so if by genetic testing they had only kept him I'm not sure any money would have been saved!

You are correct but only if having children is a sure thing regardless. Some might be put off having children if they don't want to risk passing their condition on and that would be cheaper for the nhs. I don't see a problem with them not finding for more than 1 baby, more and more families are 1 child nowadays I think people get too hung up on kids 'needing' siblings

Yabu
I dont personally think pgd should be available in your situation at all. Probably for the more severe OI who might not survive.
Because you have got to adult without even knowing about it.
There are many things that are life threatening (asthma/food allergy etc) that we are not able to pgd. And would i imagine have as severe impact on a child's quality of life.

• ivf is bloody hard work
• once you have had the 0-3 pgd goes surely many people would then go with natural conception (with abortion if it can be identified in pregnancy) because of the high pgd costs.

-infertile couples cant conceieve at all

• and if say you have been diagnosed at 20 you would have say 15y to have a family or save for pgd whereas if infertile you may have no symptoms so ttc at 30y for 3y have no time to save and cant have 2 dc anyway.

Obviously this is very different for couples carrying very severe conditions.
1/25 people are CF carriers and yet we are not routinely screened.

I do agree about cost though and it is ridiculous

Why fund 2 children? Why not 1 or 5 or 10?

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.

I take your point completely, but that’s only true if you, yourself, don’t particularly care whether your future children inherit your condition. Your statement above seems to suggest that only the NHS should be responsible for stopping your faulty gene from being passed on, not you. Does that make sense?

I’m sorry you’ve been dealt a shitty genetic hand, honestly I am. But, as ever, the NHS need to draw a line somewhere when it comes to expensive treatments.

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)

I don’t think you understand the initial concept OP put forward. It’s coming from a purely economic point of view.

Not in the UK but our system is fairly similar at present. One of my kids would have cost the health system well over 250K in their first two years alone. At present age I doubt the health system would have much change from a million. All publicly funded. That won’t stop but will only get higher.

If that child chooses to have kids they currently have 2 options - PGD or take a gamble.

Let’s say they don’t have access to PGD so take the gamble. They have a child with the same issues. Costs the public system at least a million for each of those kids in the first 20years with more cost the longer they live. That’s one fuck tonne of eye glasses right there so your analogy isn’t really that relevant.

Also ‘personal responsibility’ is not really going to factor when things are paid for by a public system as opposed to an individual. Sure, take a gamble because hey, if you lose it’s the public system that picks up the tab.

So I get it OP, no idea why the bean counters don’t compute that for certain conditions PGD would be waayyyyy cheaper for the health system than picking up the tab otherwise. It’s never made sense to me.

We are in pretty much the same situation as a family OP. Different condition, one that has allowed me to lead a very normal, productive life, then deteriorated pretty rapidly in my 50s. I wasn't expecting the deterioration; it hasn't been nearly so severe for other family members. I didn't factor it in when I chose to have my children.

So my daughters, who have my condition and live normal, active, productive lives, will go for PGD. My husband and I have set aside some savings to help them if necessary.

And yes, they could just get pregnant, have the embryo tested and have terminations if the baby has the condition. They could do this free of charge indefinitely. Its not a solution they would choose.

But, as ever, the NHS need to draw a line somewhere when it comes to expensive treatments.

But by drawing the line at PGD they are happy to fund even more expensive treatments as a result.

Your statement above seems to suggest that only the NHS should be responsible for stopping your faulty gene from being passed on, not you. Does that make sense?

Not really. So everyone who fronts up due to an alcohol related injuries, dangerous occupations, extreme sports, heck even horse riding - all could be avoided if only people took personal responsibility! NHS shouldn’t have to finance this, people should take personal responsibility. Great in theory but that’s not real life and the reality is people with genetic faults will have kids just as 20 year old idiots will have a skinful and stumble in front of a car or someone will ride a quad bike and have a serious accident.

It's pretty obvious that the poster is not trying to pit themselves against other people having IVF but talking about inefficient practices (medically and financially) in the NHS.

The NHS, Social Care and lots of other services are all still weighted heavily in terms of crisis response over prevention.
You're right there would be longer term savings for a whole host of conditions and less demand on services if they took it into account but the system creaks and can't respond quickly because it doesn't work as a whole system. The people who save money if your child is born without the condition don't give the money to the fertility/ IVF teams so everyone refuses to change without major pressure.

But it's the same with intervening to support a person who has mental health , alcohol addiction and is homeless. They won't fund intervention until you meet a threshold - such as becoming an amputee due to complications when it would have been way cheaper and more effective to intervene earlier, deal with issues and provide housing.

Op, for your condition then yes, economically it would be in the NHS interests to fund PGD if you wanted more than one child.

However practically I don't see how this could work. Not all conditions eligible for PGD will cost the NHS huge amounts of money to treat over a lifetime. So how do they go about deciding what conditions would save them money if PGD is offered, and which don't? How do they calculate if it's cost effective when all conditions and cycles are combined? I think it gets dangerous to start judging who would be cost effective and who wouldn't. Because even with the same condition, no two people could cost the NHS the same.

Many people may not realise that the criteria for PGD is set across all of England, so there is no postcode lottery. Everyone having PGD on the NHS today is eligible for 3 cycles if they meet the criteria.

My DS was born with a genetic condition. There was only one other occurrence in another family member so it wasn't expected, however because of the pattern they expect I'm a carrier with a 50/50 chance of recurrence. It's a permanent physical disability, it will not cost the NHS money long term as there is nothing they can do to treat him. There will be costs to the local authority with EHCPs and ongoing support. However if the NHS did a cost analysis for his condition vs PGD I expect it would not be cost effective for them to fund multiple PGD cycles for multiple unaffected children.

In theory I'm eligible for PGD however they have not diagnosed the faulty gene yet so they can't test it. I'm in limbo. I don't think I could bring myself to fall pregnant with the intention to terminate if diagnosed during pregnancy. And I can't bring myself to knowingly bring a child into the world with this disability. No matter how happy my DS is, I know he's going to have a lifetime of challenges. It doesn't seem fair at all. I would love the option to have even one chance of PGD to have an unaffected child but for some of us even that isn't possible.