Enter the lottery, win a baby: Why your postcode decides whether you qualify for IVF

Up to one in six couples struggles with infertility, and the WHO has officially classified it as a disease. But IVF funding criteria is so complex that eligibility has become a postcode lottery. Leslie Leuenberger meets the families and doctors fighting for equal access

The WHO has officially classed infertility as a disease (Getty/iStock)

You meet someone, you fall in love, you spend some years together and eventually decide you want to grow a family. It’s the seemingly simple path many of us take. However, according to the campaign group Fertility Fairness one in six couples in the UK suffers from infertility.

Sally and her partner – who wish to stay anonymous – are one of these couples. In 2016, after having tried naturally for two years without success, Sally got diagnosed with “unexplained infertility”. This means that not even specialists can find a cause for the couple’s inability to conceive. Sally, 39 at the time, and her partner decided to give IVF a go. The area they live in offers one full cycle of treatment to women up to 42, funded by the local NHS trust. At least that is what they were counting on, until their doctor called them into his office.

“He sat us down, saying he was so angry, so upset for having to break the bad news to us,” Sally recalls. The local clinical commissioning group (CCG) had made budget cuts. From one day to the other the age limit for IVF funding had dropped to 35. Thus, Sally wasn’t eligible for a free cycle of treatment anymore. “I started crying, thinking, where will we get the money from?”

The Lottery

The World Health Organisation officially classifies infertility as a disease. Therefore, National Institute for Health and Care Excellence (NICE) guidelines recommend that women up to 40 years of age should receive three full cycles of IVF through the NHS. Women up to 42 should have access to one free cycle. That’s the theory; reality looks different.

The NICE recommendations are not binding and so it is up to CCGs to set the rules and decide what to offer. As the NHS has been forcing budget cuts, IVF funding is often turned down for a number of reasons that vary from area to area. As a result, the access to funded fertility treatment is far more limited in some parts of England than others, creating an IVF postcode lottery.

Data obtained under the Freedom of Information Act by Fertility Fairness shows:

• Around 80 per cent of the 195 CCGs are not meeting NICE guidelines
• In the past two years, 30 CCGs have axed free NHS fertility treatment
• Almost half of the areas have cut IVF for women over 39
• And 12 deny treatment to women aged over 34
• Seven CCGs have stopped offering IVF on the NHS completely (as seen in the map below)

The best and the worst places to live for NHS fertility treatment

The expert

“It is arbitrary and it’s very unfair,” says Kate Brian. Brian is a former journalist, author of four books about fertility (The Complete Guide to IVF) and is part of Fertility Network UK. Her two children, now 17 and 21, were IVF babies.

“I’ve never experienced anything like this. [Infertility] affects every single area of your life. My whole life was tinged with sadness. When I finally got pregnant it lifted up a grey veil.”

Knowing the emotional, physical and financial struggle herself, Brian is at the forefront of raising awareness on the inequality in the provision of NHS-funded IVF treatment.

‘It’s arbitrary and it’s very unfair,’ says former journalist Kate Brian (Leslie Leuenberger)

“Some people are in a position where if they would live down the road they would get completely different access to treatment. The idea of a national health service should surely be that we give the people the same treatment no matter where they live. And when it comes to fertility problems that certainly isn’t happening at the moment.”

Not only the question of how many cycles of IVF are funded but also the criteria is different from CCG to CCG, Brian points out.

The idea of a national health service should surely be that we give the people the same treatment no matter where they live. And when it comes to fertility problems that certainly isn’t happening at the moment

Kate Brian

“Some CCGs are basically making up their own criteria. They are having their own age cutoff which is sometimes much younger than 39, they are offering fewer cycles, are not offering full cycles, they don’t treat couples where the male BMI is higher than they feel it should be. None of these things are what NICE recommends.”

Fertility Fairness found that 27 per cent of CCGs used the man’s BMI to determine whether a couple is eligible for IVF treatment. Fourteen CCGs say that men must be under 55. However, NICE states that “men with a BMI over 30 should be informed that they are likely to have reduced fertility”.

“We know that three full cycles of IVF is what’s cost-effective and clinically effective. It’s very frustrating to see that people are not getting the treatment that could help them. And that it’s done on such an arbitrary basis.”

When Brian herself was undergoing treatment, she got one full cycle funded by the NHS. The following cycles, paid for privately, costed her approximately £1,000, which is low compared to current standards.

The doctor

With IVF funding repeatedly being slashed all over England couples have no choice but to pay for treatment out of their own pockets. Across the UK a full cycle can cost between £4,500 and £10,000, however, prominent London clinics charge £15,000 or more. On top of that couples are often faced with hidden costs.

Ippokratis Sarris, a fertility doctor in London, says couples shouldn’t have ‘nasty surprises’ (Leslie Leuenberger)

Dr Ippokratis Sarris, director of the King’s Fertility Clinic in London, believes patients have a right to full transparency. “People should know what it costs and what it includes and not have nasty surprises in the end.” King’s Fertility is “like-for-like, the cheapest clinic in London,” Sarris says. The cost for a full cycle at his clinic is £3,500, but couples need to expect extra costs for drugs and additional treatment. Therefore, the price for one full cycle of IVF lies between £4,500 and £6,000. In the UK this can be twice or three times of what the average employee earns a month.

“This is a lot of money for individuals. However, from a commissioner’s point of view, IVF is not that expensive compared to other medical treatment. Drugs for people with neurological conditions, for example, can cost tens of thousands of pounds per year, and this over the course of 20 or 30 years.”

What’s the point? The expense it takes for moving is huge. It costs just as much as a cycle of IVF

Sally

Nevertheless, looking at the recent data when it comes to funding IVF, the trend is going towards less funding or no funding at all. “Unfortunately I do not see how that is going to change in the short term.”

Because the price spectrum is this large, the Human Fertility and Embryology Authority is currently working with the NHS on defining benchmark pricing for IVF.

“For some people, who qualify for NHS funded treatment and can’t afford private care, this is the only chance they have of having a child. So the responsibility that as a doctor you feel for them, is even more heightened.”

The patient

Four years, two full IVF cycles and over £10,000 later, Sally is now 13 weeks pregnant. At the age of 42, her and her partner will welcome a baby in May next year. She recalls the moment she saw her child for the first time: “This image of a baby just flashed off. And I went ‘shit’ and my boyfriend said ‘wow, this just got real’.”

Up until that moment, Sally didn’t want to fully believe that she was pregnant, too scared of getting disappointed once again. “Because it’s been a four year-long process to get where I am, I built up a wall around my emotions.”

After being cut off from funding, Sally and her partner had to pay for treatment themselves. They were able to afford it only because Sally had inherited some money right at the time when she needed it most. “I don’t know what we would have done if we didn’t have that.”

The area you live in should offer you the care and medication you need. I think there should be a standard for IVF across the UK

Sally

In order to pay for IVF treatment, people turn to all kinds of ways. Sally knows many stories. Some start selling the contents of their house on eBay, borrow money from their family, take out loans or raise money through crowdfunding. Others simply move to another postcode or get treatment abroad. For Sally and her partner, that was never up to debate.

“What’s the point? The expense it takes for moving is huge. It costs just as much as a cycle of IVF.”

After struggling to find the means to pay for treatment, the worrying about numbers goes on. Having enough money to raise a child is the next hurdle. With the money Sally inherited, the couple decided to freeze five of her eggs in case they wanted more children later on. Although they are keeping their options open, Sally feels pressured. There is not much time left to think.

The place where they come together

How many people are truly affected by the postcode lottery is unclear. But numbers become faces when visiting the Fertility Show in London. A yearly live event that lets couples struggling with infertility meet with experts, clinics, organisations and doctors alike.

Hundreds of people come to the event looking for help, guidance and advice. People from all over the UK, from all backgrounds, families, same-sex couples and singles. Kate Brian was invited to speak at this year’s Fertility Show.

After her presentation a man raises his hand, telling the audience his story of how he and his wife wouldn’t get any funding where they live. The people sitting in the room are listening closely, their expressions reveal that they’ve made similar experiences, so they nod in support of the man’s outrage. “I am sorry, it’s simply unfair,” Brian responds.

In September this year, the Fertility Network UK launched a campaign called Scream4IVF. As part of the campaign, the charity is asking people to sign a petition, forcing a debate in parliament on fertility funding.

The Fertility Network wants to ensure that the NHS and CGGs follow the recommended guidelines of three free cycles of IVF. “So, everybody, everywhere has access to treatment.” The aim is to collect 100,000 signatures. At time of writing just over 96,000 have signed the petition.