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Thursday, June 24, 2021

There's A 'Gay Tax' On NHS Fertility Treatment. This Is The Impact

The NHS needs to end the “gay tax” imposed on same-sex couples seeking fertility treatment. That’s the message from Whitney Bacon-Evans and her wife Megan – plus other couples interviewed by HuffPost UK – who are calling for an end to the “discrimination” LGBTQ+ couples face in starting a family. 

Whitney, 33, and Megan, 34, decided to pursue fertility treatment in 2020. They thought they understood the NHS system as Megan’s sister had recently had IVF with her husband, but they were “shocked and disappointed” to learn of the restrictions imposed on lesbian couples. 

While heterosexual couples are expected to try to conceive for two years before accessing NHS-funded treatment, NICE guidance states that female same-sex couples must undergo six rounds of intrauterine insemination (IUI) from a licensed fertility unit before they’re considered. They’ll then be offered NHS IUI (usually another six rounds), before being offered IVF. The restrictions are even more complex for male same-sex couples where a surrogate is needed. 

Megan and Whitney were told having six inseminations at home – for example, via a friend as a donor – would not count. Only private treatment would be accepted as “evidence” that they’d tried to conceive. 

A single round of IUI using a sperm donor can cost up to £1,600, meaning lesbian couples might fork out £10,000 before accessing free support. The bill can be even higher if extra tests, sperm storage and scans are required. 

The couple, who are known as ‘Wegan’ on social media, have now launched a petition calling for an overhaul of the system, which has nearly 6,000 signatures.

“The fact that we’re in 2021 – 2020 when we started the campaign – is just baffling in itself. I can’t believe that these walls in legislation and policy are still in place,” Whitney tells HuffPost UK. “In the eyes of the government and the law, equal marriage came into effect in 2014. If we can get married, there shouldn’t be any barriers to expanding our family. The principles are unjust.” 

Whitney and Megan Bacon-Evans

The couple’s petition has gained more than 5,800 signatures. It comes as data from the fertility treatment regulator, the HFEA, demonstrates how the makeup of families has changed in the past decade. In 2019, 2,435 IVF cycles (4% of all cycles) involved a female partner – this is four times the 489 cycles in 2009.

The NICE guidance for same-sex fertility treatment is just that – guidance – and funding for fertility treatment is ultimately decided by local CCGs, or clinical commissioning groups. Some CCGs require lesbian couples to demonstrate two rounds of IUI, but most request all six. 

Even after a lesbian couple has met the criteria, they may not be eligible for NHS treatment. They still have to contend with other restrictions imposed under the IVF postcode lottery on all couples, including age limitations, BMI cut-offs, and restrictions if one partner has a child from a previous relationship. A handful of CCGs have cancelled all free fertility treatment, no matter the couple. 

“I think there can be little doubt that same-sex couples are at best, overlooked and at worst, actively discriminated against by these restrictions,” says Claire Lynch, who’s upcoming book – Small: On Motherhoods – details her complex journey starting a family with her wife. 

“One aspect that’s often forgotten is that same-sex couples also experience multiple forms of infertility. They can have low sperm mobility, or poor egg quality, or suffer multiple miscarriages, or any of the many other heartbreaking reasons that might lead to IVF being the major hope for their family.”

Claire Lynch

This is the experience of Maria*, 35 from Leeds, who is currently undergoing fertility treatment with her partner. The couple have had four failed IUIs, one round of IVF that resulted in no embryos, and a second round using ICSI (Intracytoplasmic sperm injection), which ended in miscarriage. These were all paid for privately – and they’re about to undergo another round of private IVF.

“There is a huge impact on all aspects of your relationship,” she says. “We  struggle to make plans with family and friends or book holidays and events. We’ve been on this journey nearly two years and never know when we’ll next be ‘in treatment,’ taking medications, needing to go in to clinic for appointments and the like. It’s all really tough and consuming.” 

The restrictions on same-sex couples are “very unfair”, she adds. “I appreciate there needs to be some level of guidance, not free for everything for all – I work in the NHS, I understand commissioning – but it’s so difficult for same-sex couples.”

From Whitney and Megan's petition. 

One of the barriers faced by lesbian couples is that you can’t buy sperm from a sperm bank and inseminate at home, even if there are no apparent fertility problems. Megan and Whitney were “devastated” to discover this as they’ve always planned to get pregnant at home – seeing it as a more “loving and intimate” way to start a family – and a much cheaper option.

Instead, they’re in the process of having treatment at a private clinic, where Megan has had to undergo a series of mandatory tests, primarily designed for heterosexual couples who’ve struggled to conceive. This includes a HyCoSy test, where dye is flushed through the fallopian tubes to check for blockages.

“It was a really painful process,” she says. “Whitney couldn’t be in there with me because of Covid, and it was horrible.

“We’re not being treated like it’s a really exciting time in our lives and we’re just embarking on trying to have a child. We’re already treated like we’re infertile, we’ve been trying for years and this is our last resort. I haven’t even tried once to get pregnant, so I have no idea yet as this stage.”

The couple have also had to have mandatory counselling before Megan is inseminated. “I don’t need counselling, because I’ve known for years that I’m going to have a sperm donor, it’s not a shock, whereas you can understand that for some straight couples maybe it would be a shock if they had to go down that route,” says Megan. “It just seems like we’re just not really catered for.” 

One person trying to improve this system is Professor Geeta Nargund, a fertility doctor who’s launched abc ivf, a new fertility service marketed as the UK’s “most affordable”. The clinics, part of her parent company Create Fertility, offer fertility treatment that’s far cheaper than competitors, because they cut out “unnecessary testing and unproven add-ons”.

The company was born out of Prof. Nargund’s years of campaigning for affordable, equal fertility treatment. 

“Fertility treatment is essential in supporting the creation of diverse families by enabling same-sex couples to become parents,” she tells HuffPost UK. “As a nation that strives for equality and diversity, we should be working to uphold the founding principles of our NHS and end the current IVF postcode lottery that means couples can be denied treatment on the basis of where they live.”

It’s vital that NICE guidelines on fertility treatment for same-sex couples are updated, she says – but for the postcode lottery to end across the board, we need an overhaul of the NHS system. “We need to establish a National Tariff that places a cap on how much the NHS pays providers per IVF cycle, as well as introduce centralised decision-making, rather than by CCG,” she says.

Professor Geeta Nargund

Until such a system is in place, female same-sex couples and single women will continue to be “disproportionately impacted by policies”, according to a recent report by the British Pregnancy Advisory Service

The restrictions, coupled with expensive private IUI packages, “push some women down unsafe routes to try to get sperm,” says Whitney. She and Megan have heard from several of their followers who’ve met men via Facebook willing to donate sperm. Some of these men offer sperm in vials, but others offer to do things “the natural way”. Since launching their petition, Whitney and Megan have been contacted by several men offering their “services”.

There are risks attached to using this method. One is that these men haven’t necessarily been screened medically, points out Megan. The couple has also heard from people who’ve used unknown donors and drawn up ‘contracts’, but there’s concern these contracts will not stand up in a court of law, meaning the man could end up with rights to their child. “This kind of arrangement relies, ultimately, largely on mutual trust,” states the HFEA

It’s a process that puts your life on hold.Claire, who’s 39 and lives just outside Windsor

Even among couples who find the money for mandatory private treatment, the emotional and financial toll should not be underestimated. 

Claire, who’s 39 and lives just outside Windsor, now has three children, five-year-old twins and a two-year-old, conceived through paid-for IVF, after “many, many cycles over a period of around five years”. 

“It’s a process that puts your life on hold in all sorts of ways because you’re always in a sort of limbo, waiting to see if treatment has worked, waiting for another cycle to start and so on,” she says. “The credit card bills and expensive private prescriptions piling up certainly just compounds that feeling.”

Amara*, a 41-year-old from London, echoes this. She had two failed rounds of privately-funded IUI before deciding to move onto private IVF. 

“I fell pregnant with our daughter after one egg collection which produced two embryos, on the second embryo transfer – our last chance before starting from scratch again,” she explains. “If that transfer had failed, I thought I would be eligible for NHS funding for a further round, but the fertility service said it had to be IUI not IVF, so I still wouldn’t have been eligible. Thankfully the issue didn’t arise as I was pregnant.” 

Amara and her partner now have a two-year-old daughter, but three years after their treatment, they’re still paying off credit cards. Tests, treatment, medication and travel costs totalled around £25,000. “Even though there are still two vials of sperm in the freezer at the clinic, I can’t imagine being able to afford our desperately-wanted brother or sister to my darling girl,” she says. 

The postcode lottery makes her “furious”. “It should be available to all women on the same basis, in line with NICE guidelines – for single women, lesbians and straight couples alike,” she says. “I am disgusted at the hurdles placed in the way of women seeking access to proven treatment.” 

As well as a review of LGBTQ+ fertility policies, Megan and Whitney are calling for formal training of all NHS staff on LGBTQ+ issues. They’ve heard of couples being asked “who’s the real mum?” or “who’s the dad?” at appointments. 

Amara adds: “I will never forget turning up at the clinic for our first round of fertility checks and my partner being handed a totally inappropriate form to fill in that asked about her testicles.”

But alongside these negative experiences, the women also praised individuals within the NHS and private clinics, whose hands are tied by the system. 

“Our family exists because of the expertise and kindness we received from our private fertility clinic, but also because of the care and support we all needed when they were born prematurely,” says Claire. “I suppose the irony is that, for all it forgot about us at the start, the NHS has remained such an important part of the story of our family all the same.” 

So, why are these restrictions on same-sex couples in place? When HuffPost UK contacted NICE to ask, we were told its guidance covers couples who are having difficulty conceiving, including people who are in a same-sex relationship and have not been able to conceive through donor insemination.

“NICE guidelines make evidence-based recommendations using the evidence available at the time of development,” they said. “We regularly check that our published guidelines are current and will consider any new evidence that suggests an update is necessary. This guideline was published in 2013, replacing the previous guidance from 2004, and has been periodically updated since then with minor changes. It was last updated in 2017.”

NICE added that guidance is intended to be a guide for local NHS services, but the details are not mandatory.

HuffPost UK also contacted the Department of Health and Social Care (DHSC) regarding its view on the so-called ‘gay tax’ on fertility. A spokesperson said the level of provision available is “a matter for local healthcare commissioners”. 

“We are clear there should be equal access across England, and that Clinical Commissioning Groups should commission fertility services in line with NICE fertility guidelines. These set out that same sex female couples are entitled to NHS IVF services if they have demonstrated their clinical infertility,” they said. 

“We are committed to creating a health and care system that works for everyone. We have launched a call for evidence to form the basis of the first government-led Women’s Health Strategy to improve the health and wellbeing of women across England, and we encourage all those who have not yet done so to respond by 13 June.”

Those responses are unlikely to ease the concerns of campaigners like Whitney and Megan, who’ll be undergoing their first, privately-funded insemination soon.

“I just don’t know how it’s still continuing,” says Whitney. “There are so many of our followers who have come forward and told us their stories and it’s heartbreaking. Something has to be done, this is impacting so many people.”

*Some names have been changed to offer anonymity. Small: On Motherhoods by Claire Lynch is published by Brazen, £12.99 on June 24. 

This post courtesy of Huff Post

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