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?

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

That’s not how I see it, @HoppingPavlova

This isn’t a scenario with two outcomes though, is it? It’s not a case of “funding extra PGD” vs “funding children born with osteogenesis imperfecta”.

There’s an expectation that the OP has to make the sad but responsible choice of limiting how many children because she can (and most likely will) pass on a painful and disabling condition.

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? … arguing that some conditions are worth NHS ivf and others aren’t is dangerous

No-one is saying any genetic condition should trump anyone else's for PGD or that some conditions are not 'worth' NHS funding - if your inherited conditions could be screened for via PGD, then you would likely be eligible for PGD. Just because unfortunately it wouldn't work for you, it doesn't mean no-one else should have it. By that logic, if you had a form of a disease that was incurable and someone else had a form that was curable, you would be asking why they should be treated when you can't be.

OP

It would be cheaper for the NHS to not fund any IVF at all. Evert baby not born (even completely healthy children) cost the NHS money.

@sashh

Have you read the thread..?

IVF for genetic conditions isn't done for infertility

It is done to stop children being born with complex medical conditions, by using IVF instead of natural conceptions

Also, this:
It would be cheaper for the NHS to not fund any IVF at all. Evert baby not born (even completely healthy children) cost the NHS money.
doesn't make any sense. How can children 'not born' cost the NHS money? Unless you mean terminations and contraception?

@sashh Taking that to the full conclusion if no one was born there wouldn't be a need for an NHS.

Sorry I mean every child born costs the NHS.

And yes if no one had children then there would be no need for the NHS.

I'm taking the OPs argument to the ultimate conclusion.

We could also ban alcohol because that costs the NHS money when some people develop an addiction.

Tbh this is a hard topic because at the moment there isnt i think enough genetics known for asd to be pgd by ivf and it seems such a variable disability. With 1% for this.
I actually think pgd isnt a very efficient method which actually would be cvs etc and abortion unfortunately. So the blood test nipt etc. Because ivf is only 35% effective for 5k and obviously may be higher as pgd people arent infertile (or older necessarily) but they will be ruling out 50% of embryos to 25%. Plus they could actually be infertile as they wont have ttc yet.
Ivf is similar to abortion in that you are discarding the ones not picked. In fact there are many frozen embryos potentially.

There’s an expectation that the OP has to make the sad but responsible choice of limiting how many children because she can (and most likely will) pass on a painful and disabling condition.

Who’s expectations? Yours? The governments? The Health system? Expectations don’t mean anything. The reality is that people will have kids. Knowing this, and whether that’s right or wrong, the point is the current system does not make sense financially.

To make it simple and in easy made up figures - if a person has a disability that will cost the system $100 to treat over their lifespan and the relative cost of PGD would be $1, how is it sensible for a health system to say we can’t afford $1 so you can’t have this option when the result is a 50/50 chance of having to spend $100 instead. It’s simple maths. Public health is funded by public dollars. I don’t think this is a sensible use of public dollars that I contribute to. Nothing to do with worthiness, expectations, what’s right or wrong, it’s just simple maths.

I agree it’s false economy on the face of it, but I think they assume you wouldn’t go ahead and get pregnant knowing you have a good chance of passing a condition like that on. Nobody would, surely.

@Thehop why not? There are people out there with OI type 1 who have never even had fractures! Would you say the same to people with eds, or any number of conditions that are genetically linked, genetic cancers, sickle cell?

Sorry to be this blunt, but what would be the rules if you decided to terminate the pregnancy should the fetus be determined to have the condition? Would they fund another cycle?

And let's not say that people who do live with the condition have no quality of life or imply it isn't worth the money. I don't think people with genetic conditions should just opt to not conceive so as to confine the curse. That's along the lines of eugenics.

A couple of thoughts

Most people with osteogenesis are not going to cost the NHS anything like £100k (initial investigations, physio, bone-strengthening drugs). The monetary aspect may well not be as stark as OP suggests

The possibility of any baby being a future 'drain' on NHS resources is omnipresent, even those with no known heritable issues

The policy on IVF with screening gives qualifying recipients more cycles than the general population. But perhaps it could be modified so they get the same number of attempts with unaffected embryos? (ie cycles which produce no apparently normal embryos don't 'count' towards the normal total funded in your area

No NHS.health region (AFAIK) funds any IVF services when there is an elder sibling (from with parent)

I totally agree with your logic here. I am in a similar position....my dd cost the NHS £££. As her condition was undiagnosed (and so can’t be tested with Pgd) the recommendation is we have ivf with a sperm or egg donor. Pretty pricey and not something that would be funded....we could on the other hand try to conceive naturally...
I think the option of 3 rounds of ivf is pretty good...lots of boroughs have reduced to 1 round.

Most people with osteogenesis are not going to cost the NHS anything like £100k (initial investigations, physio, bone-strengthening drugs). The monetary aspect may well not be as stark as OP suggests

There's rather more to it than that - it's not just a case of being fixed by bisphosphonates and a bit of physio. They strengthen the bones to some extent (not perfectly - it just reduces fractures as I understand it) but all your connective tissues (tendons, ligaments, skin, blood vessels, muscles...) are still affected.

I've had major spinal surgery (told the cost of that was £50k, 15 years ago), various A&E attendances for fractures (inc one emergency surgery), surgical tooth extraction due to teeth not forming properly... and there was another major op that could have been caused by OI too.

Two affected family members have had early, severe hearing loss and so needed audiology care from early adulthood onwards (I may yet go the same way). It's not just hearing aids - there's been surgery, MRI scans etc. One needed a heart valve replacement (and when that failed, he died). Surgery for torn tendons.

£100k is probably a conservative estimate of how much I've cost the NHS so far - and I'm probably only 1/3 of my way through life.

Sorry to be this blunt, but what would be the rules if you decided to terminate the pregnancy should the fetus be determined to have the condition? Would they fund another cycle?

The whole point of PGD is that so that only healthy embryos are implanted, so that wouldn't be the issue. If, however, I conceived naturally I'm not sure if type 1 can be diagnosed in utero as they tend not to fracture in the womb (unlike more severe types). If I gave birth to an unaffected baby naturally they'd never fund PGD at all.

I'd terminate if it was type 2 (will die at birth anyway) or type 3 (very severely disabled) but while I'm very pro choice I'd have to think carefully about having a termination for type 1 (my type) if the wanted pregnancy was significantly far along. I don't believe that my quality of life is anywhere near poor enough to count as 'not worth living' so I'd struggle with the idea that the termination was in the interests of the fetus. I don't want to turn this into an abortion argument, but I just don't know what I'd do in that situation.

But you are no more likely to have a baby with type 2 or 3 than anyone else.

@DodgyGenes

Sorry what I meant is if you had IVF without pre-selection but went on to become pregnant with a fetus who has the condition, what would happen if you terminated? But I think I was assuming you need the IVF to conceive which on second reading, I don't think you do.

@imnotalpharius I think that's correct - but I was using to illustrate the fact that while I'm thoroughly pro choice and would terminate for some abnormalities, I'm not sure type 1 is disabling enough for me to want to terminate purely for that reason (even if it could be diagnosed in utero). I wouldn't terminate a wanted pregnancy for something like a club foot or cleft lip either.

@Greeve I see the confusion now! As far as I'm aware (never TTC) I'm fertile and could conceive naturally and carry to term.

If, however, I conceived naturally I'm not sure if type 1 can be diagnosed in utero

Would they not offer you an amnio or CVS? Then they do a CGA aray and look for the faulty gene, in the same way they do when they biopsy embryos to do PGD

The science exists to enable you to have a child without passing on a presumably painful disease and you get assistance to achieve this on the NHS, this is great!

If you are so entitled to gamble with the future health and wellbeing of a possible second child, then this is selfish and entitled!

*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)*

You get 3 goes (or up to a child) and that's not enough for you? Have a child, if you want another one, then you could actually pay for it?

The reality is that people will have kids. Knowing this, and whether that’s right or wrong, the point is the current system does not make sense financially
The reality is that no one is entitled to have children. The NHS can sympathise with the emotional trauma of not having one at all, but is drawing the line to just wanting more just because. Many families stop at one children against their wishes for various reasons. How do you decide what is morally acceptable? 1 child, two, 5?

The reality is that no one is entitled to have children. The NHS can sympathise with the emotional trauma of not having one at all, but is drawing the line to just wanting more just because. Many families stop at one children against their wishes for various reasons. How do you decide what is morally acceptable? 1 child, two, 5?

It’s got nothing to do with entitlement, emotional trauma or morals. As a tax payer I begrudge a system that refuses to spend $x for prevention but will happily pay $x times 100 for treatment. Having a basic grasp of maths, I can see it’s not bang for my buck.

As a tax payer I begrudge a system that refuses to spend $x for prevention but will happily pay $x times 100 for treatment.

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 $/£

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.

For the record, apart from some cheap anti depressants (£2.88/month to the NHS - I just looked it up) and the osteogenesis imperfecta, I'm pretty healthy. I don't smoke, don't drink much, I'm slim, I exercise, I don't eat meat... I look after myself far better than a lot of people do and I don't have any lifestyle related health complaints.

Following your logic, I should have had to pay for treatment for my last fracture because I was hiking when I did it and so technically it could have been prevented? For reference, my Dr is happy for me to be hiking and I was wearing proper walking boots, I just slipped.

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. The NHS funds stop smoking courses, weight loss, amniocentesis for down syndrome & other conditions, vaccines, smear tests, mammograms, bowel cancer screening etc etc etc. Presumably they do those things, at least in part, because it's cheaper to screen and prevent than to cure the disease. When the same is applicable for PGD, limiting it so artificially seems harsh and a false economy.