I reprint this important summary article on unfairness in full. How much better and ethical to have overt and universal rationing?
What are you entitled to for free on the NHS, how much should you spend on private treatment? And how can you cut costs?
he average cost of bringing up a child is now more than £225,000 – but how much does it cost to conceive one? One in every 50 babies born in the UK is the result of IVF treatment. But six out of every 10 IVF cycles are funded privately, as people side-step long NHS waiting lists and the postcode lottery of fertility treatment. Each cycle typically costs between £6,000 and £10,000, although top London clinics charge £15,000 or more.
The dilemma for would-be parents is that no matter how much they pay, IVF remains a gamble where the odds are stacked against them. Across the age ranges there’s a 75% chance each cycle won’t succeed, and the figure falls as you get older.
So what are you entitled to for free on the NHS and just how much should you be prepared to spend on private treatment? And what can you do to reduce your costs?
I spent £70,000 on IVF – but am still childless
Aged 34, theatre director Jessica Hepburn (pictured below) had no idea how much she would have to spend on fertility treatments when she and her husband started trying for a baby. Now 43, she knows the answer: at least £70,000 on 11 rounds of IVF, £7,500 on therapy related to her “unexplained infertility”, and a further £22,500 covering the cost of her debts and time off work for treatments and miscarriages. But while Hepburn is now broke, her resolve is not broken. If she could raise the money to pay for more IVF, she says she would immediately try again.
“I feel sick when I look back at the money I’ve spent, and disappointed I’ve nothing to show for it,” she says. “When I look around at our shoebox of a flat, sure, I think about how our lives could have been different. I’ve re-mortgaged our home twice to release £50,000, spent £15,000 on my credit card, taken out a loan for £25,000 and borrowed at least £10,000 from family and friends. But I can’t regret spending the money, or borrowing it.
“Time was running out – how could I wait and save up? It was the only thing I could have done at the time, and if someone walked in right now and gave me the money I wouldn’t hesitate to have another round of IVF.”
Is she addicted? “It is like an addiction,” she agrees. “The only difference is that, unlike other addictions, if I got what I wanted I’d stop.”
Rip-off prices fund a highly profitable business
With “addicts” such as Hepburn driving demand, fertility is highly profitable – and worth an estimated £500m a year in Britain. Couples pay “rip-off prices”, according to fertility expert Robert Winston – as much as 10 times the fees levied in comparable countries such as Australia. “Private in-vitro fertilisation is charged not on what it actually costs to deliver the treatment, but what it is thought the market will bear,” he told the Guardian in February.
Why do so many infertile couples in the UK turn to private clinics in the first place? “It’s very arbitrary what fertility treatment you can get on the NHS, and waiting times can be cruel,” says Karen Veness, spokesperson for the charity Infertilty Network. “But when you go private, and a clinician says you need tests costing thousands and thousands of pounds, it’s difficult to make an informed, rational decision about how much to spend. It’s hard to place a value on your future baby’s life.”
Hepburn, whose recent book, The Pursuit of Motherhood, charts her treatment at the hands of private IVF clinics, says IVF patients enter a “closed world” where what they’re spending isn’t real. “It feels like monopoly money. You go into your clinic and they take £2,000 to £3,000 off your credit card, and you don’t even blink. You’ll pay whatever it costs,” she says. “You tell yourself: I have to find the money. What if I don’t do everything they suggest, and discover that might have made a difference? You’re chasing a dream, and paying them is the only way to get it.”
What you’re entitled to on the NHS
It costs the NHS just £3,435 on average to fund a round of IVF; at least half the typical cost of private treatment, according to lobby group IVFYes.org
The National Institute of Clinical Excellence guidelines for the NHS state that couples with a defined cause of infertility should be referred for three rounds of IVF straightaway. Three rounds should also be offered to all women under the age of 40 with “unexplained infertility”, as long as they’ve been having “regular unprotected intercourse” for two years, and one round offered to most women aged 40-42.
But the NICE guidelines are voluntary and hospitals are free to impose their own rules. NHS funding for IVF varies according to where you live – and what has emerged is a postcode lottery, controlled by 212 regional clinical commissioning groups (CCGs).
In Scotland and Wales, only two cycles of IVF are offered in most cases, and in England, just a fifth of CCGs provide the recommended three rounds. A quarter provide two rounds, 52% provide one round and 2% refuse to fund any IVF treatment whatsoever.
Funding is random. For example, if you live in the Vale of York or in Scarborough and Ryedale – an area encompassing nearly 500,000 people – the two local CCGs currently refuse to fund any IVF treatments. Nearby in Harrogate, the health authority has not funded a single IVF case in the past four years, blaming financial pressures, although as of last month the local CCG has agreed to start funding one IVF cycle per woman under 42 experiencing fertility problems.
“We recognise how the old policy may have seemed unfair for local couples, especially when people living in other parts of the country have access to such treatment. It is important to stress that we are still under great financial pressure and this will continue well into the next financial year. We recognise that our new policy on IVF still doesn’t fully comply with NICE guidance, however, I am sure that local people will agree that it’s a positive step in the right direction,” said Dr Gareth Roberts, local GP and lead for planned care at the CCG.
However, Birmingham, according to Veness, has relatively good IVF services under the NHS, and so had Essex. But last week the CCG covering Uttlesford, Harlow and Epping Forest published a consultation proposing a cut from three to two full cycles for women aged 23 to 39. “There’s no rhyme or reason about NHS IVF funding across the country,”says Veness.
You can find a list of what IVF services your local CCG offers by checking infertilitynetworkuk.com, although Veness warns that it may not be absolutely up to date – the Infertility Network relies on users updating the information along with data from Freedom of Information requests.
Each CCG is free to impose its own restrictions regarding eligibility for IVF. So you’re likely to be refused treatment if you’re a smoker, overweight (such as having a body mass index above 30) or already have a child (adopted or biological). “Very cruelly”, according to the Infertility Network, 85% will refuse to treat you if your partner has had a child before.
Ignoring NICE guidelines, many CCGs also restrict treatment to younger women, with 10% refusing IVF to women over 35. This is despite the fact that couples are not typically referred for treatment until they have been trying to conceive for two years and, once referred, they can be placed on waiting lists for a year or longer. If, by the time they reach the top of the list, the woman’s age means they are ineligible for NHS treatment, their only option is to turn to the private sector – years older and very likely even less fertile than when they began the process.
“The postcode lottery for IVF is completely unfair,” says Nicola Bates, IVFYes founder. “Infertility is a disease and should be funded according to NICE guidelines. Why should an intensely stressful financial burden be placed on some infertile couples, but not their neighbours?”
NICE guidelines recommend that all women aged 35 or under should be offered clinical assessment after a year of trying to conceive, and that women over 35 be offered an assessment even earlier (for example after six months of unprotected sex). Yet GPs can – and often do – ignore these guidelines.
“Don’t be fobbed off by a GP who tells you to try to conceive for longer,” says Infertility Network chief executive Susan Seenam. “Print out your CCG’s policy from our website and take it to your appointment. If you’re still refused an assessment, ask for a second opinion. Change your GP if necessary. There might an underlying cause for your infertility and if so, it doesn’t matter how long you try – you’re never going to get pregnant.”
The long-term financial consequences of IVF
Lauren Williams* a 41-year-year old nurse from London, gave birth to a baby girl last year after her third attempt at IVF. After spending two years waiting for an NHS treatment that failed(the clinic she was assigned to only had a 20% success rate), she and her husband spent all their £7,000 savings and took out a £10,000 loan to pay for two private treatments, harvesting a single, lucky egg from the final round.
But while she says she’d do it all again, she feels guilty her infertility has left her family with a spiralling £15,000 credit card debt, as well as the loan.
“IVF cost me my job. You don’t have the right to time off work for IVF appointments and so I was refused permission,” she says. “I’d had successive miscarriages and my employers started questioning my commitment, telling me that work had to come first. It was very stressful and I couldn’t stay there.”
Without her salary, and no maternity leave to fall back on, the couple have spent the past two years living on six different credit cards; a fifth of their household income goes on the loan payments alone. “It’s been a real struggle; we live in a one-bed rented flat and I feel bad that we don’t have the money we could have had to spend on our daughter. But ultimately, we’d prefer to be broke and have our wonderful child. Life for us would be empty without her.”
She does wish she had frozen her eggs while she was in her 20s, so it would be easier to have another child. “Every woman who wants kids should freeze her eggs while she’s in her late 20s or early 30s. It’s like taking out insurance. It could be cheaper in the long run.”
Tracey Richardson-Lyne, 36, found herself the victim of the postcode lottery of IVF funding after marrying husband Chris. Her local clinical commissioning group in Leicester, which sets local priorities for IVF funding, refused to allow her to have IVF on the NHS on the grounds that her husband already had two children from a previous marriage.
“It’s completely unfair and I feel very angry about it,” says Richardson-Lyne, an accounts clerk in the city. “If I had married someone without children, I would almost certainly have been allowed IVF treatment.
“His children do not live with us and are 45 miles away. It also seems to depend on where you live – another CCG might have agreed to pay for IVF. The NICE guidelines don’t say anything about cases such as mine, so the policy seems to be made up by the CCGs as they go along. I reckon there are hundreds and possibly thousands of people in the same situation as me.”
Richardson-Lyne has been trying to have a child for 10 years but has suffered three ectopic pregnancies. She has written to her MP and complained to the local health authority, but with no success, and has repeatedly been turned down for treatment.
She eventually saved up the £6,000 she needed for private IVF treatment. This has been unsuccessful and she has now abandoned hope of having a child. “I would have loved to have children, but I’ve given up. Financially and emotionally I just can’t cope with it any more,” she says.