If you are not affected directly by infertility, then it’s very likely to affect someone you love. According to the World Health Organization (WHO), one in six people globally experience infertility — which WHO defines as a disease of the male or female reproductive system — in their lifetime. In April this year, Pascale Allotey, director of sexual and reproductive health and research at WHO, said that the prevalence of infertility is "staggering".
WHO recommends that countries offer universal health coverage for fertility treatments, following the example of places like Denmark, Sweden, Spain, Morocco and Indonesia, which directly support their citizens through their healthcare systems. For those not lucky enough to live in those countries, accessing fertility treatment can be a difficult process.
In the UK there is some access to NHS-funded cycles of IVF. But due to a combination of access restrictions, COVID-related delays and a postcode lottery, the number of people who can access the service is limited. According to the latest figures from the Human Fertilisation and Embryology Authority, the number of NHS-funded IVF cycles has been falling across the UK since 2019.
And so the other option for people dealing with infertility is to go private. Which can get expensive. Fast.
When Robin, 38, (they/them), and Jen, 35, (she/her), went to their chosen fertility clinic to start IVF earlier this year, they were dumbfounded by the clinic’s attitude about the cost. Through a combination of saving and the generosity of Robin’s mum, they had saved enough for a round of IVF based on the prices they were given in 2022 (about £4,000). But costs kept accruing.
"It was weird when we went to the clinic — they implied that we would try loads of times, and then they didn't even tell us how much everything would cost," Jen explains. It was months into the process before anyone conceded that Robin and Jen might not have access to infinite funds, when one of the nurses said to the couple: "Oh, I work in the NHS, I know how expensive this is."
As Jen puts it: "I imagine it’s like when you go to a posh restaurant where there's no prices on the menu. They bring the bill at the end and you're not even meant to look at it. You're meant to just give them your card: to look at the bill or talk about the bill would be gauche."
With big, emotional decisions like IVF, it’s far harder to let unexpected costs put an end to a couple's hopes of conceiving a child together. People will save, crowdfund or even take on debt they can’t afford to meet these costs.
The rising cost of IVF in the UK
According to research conducted by the personal finance company Credit Karma in 2022, two-thirds of Britons who undergo fertility treatment struggle to recover financially. Of the 1,003 respondents to the study, 68% said the cost of fertility treatment had a lasting impact on their finances and 73% of those who had treatment were willing to go into debt to cover the associated costs.
This is echoed by research conducted by Fertility Network. This week (30th October - 5th November 2023), they released the results of a new survey of 200 people which found that the vast majority of respondents (95%) were experiencing or had experienced financial worries in relation to fertility treatment, and for most (92%) these problems were being or had been exacerbated by the current cost-of-living crisis.
This builds on their 2022 research. Catherine Hill, interim chief executive at the charity, explains that the results of their 2022 survey of 1,279 respondents show that "as a society and a health service, we're failing fertility patients". She continues: "Our survey highlighted 63% of patients are paying for [part of] their own treatment. Our position as a charity is that you should be able to access NHS-funded fertility treatment for infertility. Infertility is a recognised disease and it should be treated on the NHS. So the fact that 63% [of 1,279 survey respondents] are paying for their own treatment is wrong to start off with."
The survey found that people’s spends averaged around £13,750 (compared to an average of £11,378 in 2016) but the charity also heard from a percentage of people who were spending over £30,000 (12%) and a few who were spending over £100,000 (0.5%).
The need to go private affects people across the UK but particularly in England, where a postcode lottery determines what help you may be able to access through the NHS. Unlike Scotland (where eligible couples are offered three full cycles of IVF), Wales (where they currently offer two full cycles) and even Northern Ireland (where they offer only one partial cycle), the restrictions in England vary wildly depending on where you live.
What about NHS-funded IVF?
Dr Raj Mathur, chair of the British Fertility Society and spokesperson for the Royal College of Obstetricians and Gynaecologists, says: "There remains unacceptable variation in access to NHS-funded fertility treatment. We encourage commissioners to adopt NICE (the National Institute for Health and Care Excellence) guidelines without setting local restrictions. This will ensure the one in seven couples that experience fertility issues are able to access the care they need."
"In England it's an appalling situation," Catherine explains. "We collect data on what the different Integrated Care Boards (ICB) [the statutory NHS organisations that plan services in a geographical area] are offering. By our estimate, at the moment only 13% of areas in England offer three IVF cycles. Eighty-seven percent aren't offering the national recommendation and the majority, 65%, are only offering one cycle."
It’s important to note the difference between what NICE defines as a full IVF cycle and what is actually offered.
NICE defines a full IVF cycle as going through ovarian stimulation where you'd produce on average five or six eggs. You could then produce five or six embryos. A full round of IVF is when you have one embryo at a time put back in — the first one fresh, the rest frozen. You have subsequent embryo transfers until you are successful.
Catherine says that in that same research, Fertility Network has found that "at least a third, probably more" of all healthcare areas in England are offering partial cycles (one fresh transfer and one frozen transfer) and calling them IVF cycles. According to further research by Fertility Network, of those offering these partial cycles, one in 10 are offering the "absolute bare minimum" of just one embryo transfer. "It is really scraping the bottom of the barrel," Catherine adds.
Those who go private do so because they feel they have no other choice. Robin and Jen had hoped for the NHS route but long waiting times, the BMI cut-off of 30 and limited access for queer couples pushed them down the private route.
Who can (and cannot) access NHS IVF?
Support for Robin and Jen and other queer couples like them is particularly fraught. In July last year, the Women’s Health Strategy announced plans to remove the additional barriers restricting same-sex couples' access to NHS-funded IVF. As things stand, same-sex couples must pay for either six or 12 rounds of artificial insemination, with at least six taking place in a clinical setting, before they can be considered for NHS IVF. This means the financial burden of all testing, sperm and storage, as well as several rounds of intrauterine insemination, falls to the couple. These changes were expected to happen in April 2023 but have yet to be implemented. And so several campaigners, including Stonewall with its #IVFforAll campaign, have increased their pressure on the government. While these restrictions mostly directly impact same-sex and queer couples who can carry, access to IVF is also restricted for other family structures, including single women and women who have a child from a previous relationship. Guidance for trans men and other queer people with wombs is unclear, though some trans men have been able to freeze their eggs at NHS-funded fertility clinics.
The NHS across the UK also uses the BMI, an unreliable indicator of health, to police access to IVF. Katie, 31, (she/her), has been trying to conceive with her long-term partner, Pete, for nearly two years but has struggled because of her polycystic ovary syndrome (PCOS). The symptoms of PCOS that are most directly affecting her are anovulation (absence of ovulation), amenorrhea (absence of menstruation) and unexplained weight gain. "For some time now, my BMI is over 30," she explains to Refinery29 over email. "Because of this, I don't qualify for fertility treatment care. I've been recommended by my NHS GP to take Ozempic [a diabetes medication that some doctors prescribe for weight loss], which I have been doing, but because my BMI isn't high enough to meet the NHS criteria, I have to pay for it myself. The cost from a private dispensary has just increased (like literally everything else) from £195 per month to £225." Katie doesn’t have financial support and says that private care could impede NHS access later, meaning she is caught between a particularly devastating rock and hard place. She is paying for her treatment by working constantly and, when unavoidable, going into her overdraft.
She continues: "All I can do is risk an eating disorder relapse, work myself to death to earn enough for Ozempic and pray that my gynaecologist can prescribe me Clomid [a medication prescribed to help induce ovulation] so that my BMI doesn't impede my access to motherhood. Otherwise, I'm fucked."
These restrictions even apply for people who otherwise fit the NHS criteria. Sarra*, 34, (she/her), and her boyfriend, Josh, had been trying to conceive for a year and fell within the NHS guidelines around BMI and family formation. They decided to do a private 'fertility MOT' as they were struggling to conceive but their GP couldn’t refer them for fertility diagnostics until they’d been trying unsuccessfully for an additional 12 months. The standard wait is between 12 and 24 months.
"When we were finally referred by the GP, the NHS clinic wouldn't accept our private test results so we underwent the same tests again and were given the 'diagnosis' of unexplained infertility," she tells Refinery29. This process included sitting on a months-long waiting list for one of the diagnostic tests, known as a HyCoSy (hysterosalpingo contrast sonography, an investigation of the fallopian tubes). As her particular ICB requires that you try to conceive for at least three years with this diagnosis, Sarra was faced with a choice between waiting — and risking her fertility declining further — and going private. She chose the latter.
The added stress of other medical debt
Restrictions and delays in other parts of the health service also have a knock-on effect. Rachel, 26, (she/her), and her wife have a debt of about £20,000 following her wife’s medical transition. They are now trying to formulate a savings plan to start IVF with her wife’s sperm, which they froze pre-medical transition.
"We've had a difficult experience with the NHS through my wife's transition: being on those waiting lists, being let down and, in the end, making that decision to go private and seeing the effect it had on how quickly she could medically transition. For us it just made sense to go straight down the private route [for IVF]." However, this is a scary prospect given their current financial situation.
She continues: "It's getting that balance right between what is going to give us that result that we want, which is starting a family, versus having to wait forever and being let down, something we've already experienced so much of."
So why is fertility treatment and IVF so expensive?
The normal rules of financial planning don’t work for fertility treatment. You can budget and save and have a clear vision of the exact path you want to go down but so much is out of your control, including the expected outcome. You don’t know if or when you’ll reach the outcome you’re hoping for (a baby), nor do you know how the process will affect you. IVF is an incredibly emotional and invasive process and it’s difficult to make emotional decisions, like how many times you should try, based on financial realities. It may be economically unwise to rack up more debt for just one more attempt but the alternative is emotionally devastating for many who are trying to conceive.
Nader AlSalim is the founder of Gaia, a fertility startup aiming to make IVF more accessible. Based on his own experience and the company’s research, he says the strain of these decisions can lead to what he calls "financial trauma".
"People, especially in the UK, are weird about money so they don't talk about it — even in couples. Imagine you're not talking about money when you're going through fertility, which is stressful. Then imagine you don't know how much money you're not talking about. Is this £1,000? Is this £30,000? Because I don't know how much, I don't know how to fund it and I don't know what the result will be. By the end of the day, I might resort to debt that I can't afford."
A major factor in the cost of private fertility treatment is that in the UK, the industry is currently charging incredibly high prices. IVF is a very emotional investment with very heavy expectations — it’s unsurprising that people will spend money they don’t have on the promise of a child. And the normal checks and balances that bring down the price of healthcare aren’t at work when it comes to fertility.
As Nader explains, there are two parties in healthcare that usually negotiate the price down: "the government if they form some sort of a subsidy and they force the private market to come down, and the insurance company." In the UK, the government is not taking that action and as the majority of insurance companies don’t cover fertility treatment, no one is negotiating with healthcare providers to deliver services at competitive prices.
How can we fix the problems surrounding access to fertility treatment?
All of this conspires to take a huge toll on people who are seeking fertility treatment. It can exacerbate pre-existing problems with self-worth or weight, fuel tensions in families or lead to the treatment becoming a constant fixation.
Several parties are working on ways to provide solutions to this problem. From a public health perspective, the Fertility Network is continually campaigning to change the situation for everyone who deals with infertility, while others focus on the discrimination against queer people. Last week, influencers Whitney and Megan Bacon-Evans withdrew their high court case against the NHS, citing a "victory for equality" as their ICB volunteered to give same-sex female couples the same access to fertility treatment as heterosexual couples, following a two-year review.
On the private side, Nader’s company Gaia is working to alleviate the financial burden by acting as an insurance provider: They negotiate with service providers to get competitive rates for every possible treatment you could seek in IVF and create bespoke monthly plans for individuals that are calculated based on each customer’s IVF success rate. This is determined using 2 million data points from about 1 million women who underwent IVF in 115 countries globally. That price is then fixed on day one, with you losing only 30% of the money you’ve paid if you don’t get the results you want. Gaia's offering was launched in March 2022 and the company already has over 200 members.
There are small improvements from these pushes. This year, two areas — Essex, Basildon and Brentwood; and mid Essex — reinstated NHS IVF and for the first time in a decade, all areas of England now offer some access to NHS treatment. The issue is also getting (some) wider attention. Maria Caulfield, the parliamentary under-secretary of state for mental health and women's health strategy, recently stated: "We expect the removal of the additional financial burden faced by female same sex couples when accessing IVF treatment to take effect during 2023." Refinery29 asked for additional comment from the Department of Health and Social Care, and a spokesperson said: "We are improving access to IVF and wider NHS fertility services through our 10-year Women’s Health Strategy for England." They added: "Decisions on NHS-funded IVF treatment are rightly made by doctors, based on a patient's individual clinical needs."
What is vital now is that these words are turned into actions. As many people cannot afford to wait for things to improve, the most important thing that Nader, Catherine, Rachel and many others offered is advice: Research thoroughly by looking up commercial protections surrounding purchasing IVF from the Competition and Markets Authority; have in-depth, honest conversations with your partner, if you have one; and seek support through a charity like the Fertility Network — they have an information line, a support line and peer support groups. The process can be isolating but there are those who can offer support in making those difficult decisions.
*Name changed to protect identity