Opinion: we’ve got to do more to protect people undergoing IVF

Our writer is worried that people seeking IVF have less protection than tourists

When I want to book a flight in this country I have certain protections. European laws require the airline to show all unavoidable taxes, fees and charges upfront.

That’s essential when I am pricing up my plans because it stops me from thinking I’ve found an absolute bargain only to discover at the last minute that certain inescapable charges have doubled the price.

Such consumer protections are an essential way to ensure that big businesses don’t ride roughshod over the rights of customers in an attempt to capture their business before revealing the full cost.

So it seems ridiculous that we have such essential protections for air travel but not fertility treatment. People who want a baby are probably more desperate to do so than I am to fly to Slovakia so why on earth are they facing costs that rocket once they are committed?

Because rocket they do, as a recent report from healthcare intelligence agency LaingBuisson found. It’s shown that the UK fertility market is worth £320 million but that’s currently accelerating. Growth was previously around 3% a year but recently that’s climbed to 4.5%.

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The growth is attributed to the increasingly later age at which women start families, a decline in male fertility and greater acceptance of the role of fertility treatment in starting a family for those who struggle, are in same-sex relationships or who are single but want a child.

Yet the report author says that a lack of transparency over the price leaves many people facing bills that are double what they expected.

Hugh Risebrow told The Guardian newspaper: “The headline prices quoted may be, say, £3,500, but you end up with a bill of £7,000. This is because there are things not included that you need – and then things that are offered, but are not evidence-based.”

So people are not being told about costs they cannot avoid and also being encouraged to spend extra on treatments that have not been proven.

How can we possibly provide more protection for tourism than for people trying to start a family? It’s time to stop exploiting people who are worried about their fertility. It’s time for state intervention.

The big business of fertility

Even before you begin looking at IVF, there are plenty of enticing offers to help you conceive. The Fertility Roadshow, for example, runs twice a year and offers genuinely useful advice on healthy conception and pregnancy, as well as preparing to start trying and options if it doesn’t succeed.

It also has a huge number of exhibitors, advertising IVF, egg donation services, private reproductive tissue storage, sperm bank providers, an IVF concierge service and that was just page one of three.

Now, many of those services are legitimate and useful, and provide real clarity for anyone worrying about the process of getting pregnant; I do not mean to imply anything negative about the roadshow.

However, it does prove an important point: fertility in the UK is big business.

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And once you’re past trying and failing to conceive, and you decide you need help, things can get pricey. The LaingBuisson report shows that 70% of the market in the UK is privately funded, potentially because some would-be parents have struggled to access NHS services or have used up their limited IVF shots.

Access is a postcode lottery in the UK, with an increasing number of health trusts refusing to fund rounds of fertility treatment at all. Others may find they are excluded because their partner already has a child or because of their age or even weight.

So many people turn to private providers but the amount they pay can vary enormously.

I would like to see greater control of this area so that those people who simply want to get pregnant and have a baby can feel in control of the potential costs. They need to know upfront how much it will be so that they can plan how far they can realistically afford to take the treatment and what impact the costs will have on their lives.

Along with many other people I’d also like to see the NHS offering evened out, so that everyone who needs it has the same right to access fertility help.

But there’s another area I’d like to see better regulated and that’s the ‘extras’ offered by many clinics. Unproven, pricey extras that far too often seem to be simply gouging people when they are at their most desperate.

May help, will cost

The trouble is, it is very hard to be rational when the stakes are this high. I don’t say that to disparage would-be parents, the stakes could not be higher and so they will obviously take any extra chance at success.

After all, if you’re spending £4,000+ on IVF and you’re offered an additional treatment for a few hundred pounds then it would be very easy to think: “Why not?”

You’re already so many thousands down, so what if that comparatively small extra was the thing that finally worked, did the trick, got you pregnant, and ended this expensive and exhausting IVF journey?

Wouldn’t you go for it, even if there was no evidence, especially if you were told it ‘may help’ (‘may’ and ‘help’ seem to do a lot of work in almost all marketing). You’d surely decide it’s worth a go, that it could be a false economy not to.

You’re not in the best place to make an informed choice at that time. Yet the Human Fertilisation & Embryology Authority warns that not all add-ons have been proven effective and that some can actually cause harm.

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Treatments include ‘assisted hatching’ (“Assisted hatching is not recommended because it has not been shown to improve pregnancy rates,” according to NICE); ‘embryo glue’; endometrial scratching; reproductive immunology tests (“Not only will reproductive immunology treatments not improve your chances of getting pregnant, there are risks attached to all these treatments, some of which are very serious,” says the HFEA); and many, many more.

Some may help but they are unproven. Some won’t make any difference. Some carry risks to the person trying to get pregnant. There’s some really good advice and guidance over on the HFEA website.

We need state intervention to ensure that would-be parents are not exploited by being offered unproven extras at a time when they are understandably more susceptible to taking chances.

If clinics are to offer them, they should only be as part of a package and the total cost given up front and openly.

Some people will go through many rounds of IVF or other fertility treatments as they try to form their family. They deserve at very least to have at least the same protection as me when I book flights for a holiday.

What do you think? Are people being exploited when they are desperate or is offering extras just normal and expected for private healthcare? Have your say using the comments below.