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Tuesday 29 September 2020

Big Egg

Egged on

People desperate for a baby soon see the bills mount up for add-on treatments with little chance of success

By Gaby Hinsliff

A year after Sarah’s daughter was born, an unexpected bill arrived.

It was for storing seven spare embryos created when she and her husband underwent IVF. It was a cost she couldn’t recall discussing with the doctor at the time. As she and her husband didn’t want another child, he suggested letting the embryos be destroyed rather than paying to have them preserved. But Sarah couldn’t face letting go.

“I’d had a bit of postnatal depression, I was really worried that my baby would die after all I’d been through, and then this letter comes… I felt like they were literally going to take seven of my children off me.” So the couple found another £500, on top of the £13,000 they’d already spent, to keep them. But the episode set Sarah thinking about a world where emotions run so deep, and hopes so high, that questioning the bill comes to feel almost unseemly.

Her experience at a private London clinic was good by most standards, she says; her doctor advised against extras like acupuncture, pushed by some clinics to help patients relax despite minimal evidence that it helps them actually conceive, and didn’t charge for a cycle of IVF abandoned at an early stage when her body didn’t respond to the drugs. Yet the 38-year-old has some troubling memories, too. There was confusion over the cost of IUI, a procedure offered as an alternative to full IVF where sperm is placed directly into the womb, which she understood would be £1,500 for three attempts, only to realise after the first one failed that it was £1,500 per shot. “We never had a piece of paper; we made lists of things but there was no ‘this is what we’ve agreed’…. He was a very high-level consultant and money wasn’t something he wished to discuss. If you mentioned fees he’d say ‘the fees are all on the website’.”

Egg storage for in vitro fertilisation (IVF)

She also remembers discussing ICSI, a standard technique involving injecting sperm directly into the egg, as a potential option if needed during IVF but “we never had that conversation [about attempting it] and then when I got the bill I was like ‘oh, he did ICSI then’.” Sarah hadn’t realised, either, that even after conceiving she would need drugs to support the pregnancy. “In the end I didn’t have to buy too many, but again he made me feel like ‘what are you questioning me for? I got you pregnant..”

Sarah, who works for a high street bank, says she and her husband aren’t rich. “We used whatever savings we had. We’re not people who would spend that kind of money on anything else so it was a big deal for us.” Yet at the time, she thinks she would have bought whatever the doctor recommended. “You’re so vulnerable, and it’s such a horrible experience, that you just want it to be over.”

One in seven heterosexual couples will have trouble conceiving and for gay couples, fertility treatment can be the only route to a family. Although in theory infertile couples in the UK should be entitled to three free cycles of IVF on the NHS, as recommended by the healthcare assessment body NICE, in practice, NHS provision is patchy and many couples are forced to go private. And the combination of profit-making businesses with people who would do anything for a baby creates a situation arguably ripe for potential exploitation.

A doctor implants the egg for a couple going through IVF

In February this year, the Competition and Markets Authority began a review of the consumer law surrounding fertility treatment, amid concerns about clinics exaggerating success rates and mis-selling treatments which may not work.

Although the Human Fertility and Embryology Authority is the clinical regulator for fertility treatment in the UK, it has only very limited powers over non-medical issues like misleading marketing or pricing.

Concerns have centred on so-called ‘add-on’ treatments offered alongside IVF to boost the chances of conception – like pre-implantation genetic screening processes or ‘embryo glue’ techniques designed to help a fertilised embryo ‘take’ in the womb. A 2016 study of various add-ons led by the University of Oxford’s Centre for Evidence-based Medicine only found clear evidence of improved live birth outcomes for five of 27 add-ons studied.

But while the HFEA set up a ‘traffic light’ rating system last year to guide patients away from less effective treatments, many clinics still offer add-ons, with around three-quarters of patients in one recent survey saying they had paid for at least one.

The CMA’s review of consumer law is also expected to produce new guidance on transparency around fees. At the moment, around three-fifths of private fertility patients pay more than they had originally expected, according to HFEA surveys. And while people struggling to afford treatment can now take out specialist IVF loans, some come with high interest rates (APRs) attached. It’s all too easy when someone is desperate for a child to overlook the small print when leafing through brochures peppered with baby pictures.

Rachel Herlihy, an ICU nurse, and her partner Nathan Dippie set up their website ineedivf.co.uk to help others navigate the system after conceiving their own daughter via NHS fertility treatment. They are regularly approached by couples bewildered by private clinics’ glossy brochures full of additional treatments, and Nathan says the pressure on lower income couples can be acute. “We’ve had four or five people come to us who were not in a financial position to fund IVF privately but had no other option, and they were directed by clinics to loans that were 40% APR or to egg-sharing, which is right for some and not for others.”

Critics argue this practice, where women donate spare eggs to other patients in return for free IVF that they couldn’t otherwise afford, can encourage them to do something they may later regret – particularly if they don’t ultimately get pregnant. How might they feel about knowing that somewhere out there could be a child that is genetically related to them, born to another mother?

Human embryos sit suspended in liquid in a petri dish

Professor Susan Bewley, emeritus professor of obstetrics and women’s health at King’s College London and one of the experts who helped draw up NICE’s fertility guidelines, recently led a research project on abuses within assisted reproductive technology.

Her findings have yet to be published but she uses the phrase “abusogenic environment” to describe a system where individual doctors may not be breaking the rules, yet patients are potentially exposed to harm given their vulnerable emotional state and unwillingness to complain.

Women who emerge with a baby aren’t inclined to ask too many questions, while those who don’t become pregnant may blame themselves for ‘failing’ to conceive. “We’re trying to describe a system that generates abuse and the best way it carries on is for people to blame themselves, to feel shame and be silent, and then be dismissed and denied if they speak up,” says Bewley. She argues that one solution is making IVF treatment more widely available on the NHS, so that couples aren’t forced into the profit-making end of the business.

“I think the system is ripe for exploiting people because of the nature of what’s being dealt with, which is the birth and death of hope.” If couples insist on treatment after treatment with minimal chance of success then doctors should, she says, counsel them on when to stop: “But when you’re paying them, they won’t.”

Yet for some patients, it isn’t quite that simple. Katy Lindemann underwent four IVF cycles, seven cancelled cycles, two pregnancies and two miscarriages while trying to conceive, plus virtually ‘all the add-ons’ she could find. And that was only the start. When her doctor refused to carry out further unproven treatments, she simply went behind his back seeking other doctors who would. She posed as a man online to order Viagra after reading that it might help, Skyped with American doctors seeking bespoke drugs, and even tried to get onto an experimental programme in Greece involving stem cell transplants. “The only reason I didn’t was that they wouldn’t do it for me – otherwise I’d have been on the plane.”

A lab technician performs an intra cytoplasmic sperm injection process (ICSI)

What ultimately stopped her was a diagnosis showing she wouldn’t be able to carry a baby to term. “If we hadn’t had that, I would have kept going until we reached breaking point. I’d have sold everything we had,” says Lindemann, who runs the Uber Barrens Club support network for women unable to conceive. “I know one woman who has had 28 cycles…she’s going abroad, where treatments are cheaper, and there are things you can do that aren’t allowed here.”

Multiple failed cycles take a toll not just on bank balances, but on mental and physical health, yet there is no explicit regulation dictating when doctors should stop offering IVF. However the British Fertility Society’s chair-elect Dr Raj Mathur argues it’s not ultimately in British private clinics’ self-interest to spin out treatment indefinitely, since multiple failed cycles lower their publicly recorded success rates: “There’s a big incentive on the doctor not to do futile treatment, or it will ruin your results.”

Yet Dr Mathur, senior fertility consultant at the private Manchester Fertility clinic, argues there are times when it is ethically right to let people who are unlikely to conceive go ahead with treatment in order to allow them a sense of closure. “Sometimes people are having treatment so that they are able to tell themselves they did everything they could, and that’s not an irrational thing, it’s a very human position.” But the key, he says, is that these patients should have very clearly “considered, digested and understood” the odds first. As for add-ons, “what we would like to see is add-ons being offered with a strong evidence base – and where there isn’t a strong evidence base patients should have a full discussion. What we would like to achieve is patients being consulted properly.”

Katy Lindemann argues that blaming private clinics for exploiting women is too simplistic, overlooking the wider cultural pressure some feel to become a mother. “We have the myth of the persistent patient, ‘don’t give up, if you want it, it’ll happen’. There’s always a question mark – ‘maybe if I did this, maybe next time, why wouldn’t we be that unicorn couple everyone wants to tell you about who had been trying for 15 years and went on holiday and then they had quadruplets?’ ”

She has, she says, no regrets about the add-ons she tried. “We were doing them in no small part because we were planning for what happened if we didn’t conceive; we could look back and say we’d tried everything.”

But what’s needed, she thinks, is an end to the stigma heaped on women who can’t conceive. “When you’re in it, the only way out is presented as having a baby. It’s only when you go ‘ok, it’s not just me that can’t’ that something changes.”

 

Added extras: The long menu of IVF add-ons

The Human Fertilisation & Embryology Authority (HFEA) created a traffic light ratings system that has reviewed these add-ons, examining the scientific accuracy of these treatments through an independent body.

Red is given to treatments that show no evidence they can improve live birth rates – or to indicate there is evidence to show that the add-on is unsafe…

Amber is given to add-ons where there is conflicting or inconclusive evidence that a technique can improve live birth rates, or to signify that the add-on is safe for patients to use…

And green is ascribed to an add-on where there is more than one good quality randomised control trial which shows the procedure is effective at improving live birth rates and is safe for patients to use. There are currently no add-ons which have been given this rating.

Despite their questionable value, these treatments aren’t cheap. Pre-implantation genetic screening (PGT-A), which was reclassified from amber to red by HFEA last December, can cost up to £3,000.

 

 

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