Sir Keir Starmer has promised to address a postcode lottery for the only drug approved for a debilitating pregnancy sickness condition.
The prime minister was asked in the Commons on Wednesday by Liberal Democrat MP James MacCleary if he would work with the Department of Health to end the “scandal”.
Xonvea is the only drug approved in the UK to treat the extreme vomiting and nausea caused by hyperemesis gravidarum (HG), which affects thousands of woman, about 3% of pregnancies, each year.
Some women have it for several weeks, some their entire pregnancy, and it can lead to dehydration, weight loss, and serious physical and emotional distress, with some so ill they are terminating wanted pregnancies.
Sir Keir said he would make sure Mr MacCleary has a meeting with a minister “to see what more can be done to get this treatment to patients who need it”.
The Princess of Wales was admitted to hospital with HG during all three of her pregnancies.
An inquest last year found a failure to provide adequate care to HG sufferer Jessica Cronshaw, who was 28 weeks pregnant when she took her own life, “contributed to her mental health deterioration”.
The charity Pregnancy Sickness Support has found it is a postcode lottery to get Xonvea on the NHS, despite 84% of 800 sufferers surveyed by the charity reporting it to be effective.
Different NHS trusts and GPs have different rules on prescribing the drug, which costs the NHS about £28 for a 10-day supply – but £90 if bought privately.
Woman terminated pregnancy after Xonvea denied
Sarah Spooner, 32, terminated a pregnancy at 13 weeks in April after being denied Xonvea, which was first licensed for use in the UK in 2018, by her GP.
The 32-year-old optometrist, who had HG for 40 weeks with her first child, had to take a 50-mile round trip to a hospital to get a two-week supply.
Sarah Spooner had a termination at 13 weeks due to hyperemesis gravidarum
After the second hospital trip, the prescription did not have a date so the pharmacy would not give her the drugs and she was feeling so much more ill than her first pregnancy she did not feel she could go on.
She twice booked a termination but could not go through with it before eventually deciding it was the only option.
A month later, her pharmacy told her it had an old prescription from her GP for Xonvea – the same GP who had said she could not have it.
“It just felt like my whole body was saying ‘this isn’t happening’,” she told Sky News.
“When I went for the second attempt at a termination I was so upset they said they couldn’t do it, and I said ‘I don’t really want it, to be honest’.
“I remember the woman saying to me ‘worst case scenario you’ve only got another seven months of this’ and I was thinking another seven months of this is going to kill me.”
Mrs Spooner ran out of Xonvea the day before her third termination booking in Cardiff and was vomiting “non-stop” from 1am.
“Going in to pick up antidepressants – because of everything – from the pharmacy a month later and being handed the bag of Xonvea was just the most horrific moment of my whole life,” she added.
She said the GP surgery investigated the incident, apologised, and has been very helpful since then, with her doctor pushing to get the health board to allow them to prescribe Xonvea at an early stage.
Mrs Spooner’s GP said they could not comment due to patient confidentiality.
A spokesperson for Aneurin Bevan University Health Board said: “We’re very sorry to hear of Mrs Spooner’s experience. We do not underestimate how distressing this must have been for her and her family.
“After the family contacted us via our Putting Things Right process, we have been liaising with them and are in the process of conducting an investigation into their concerns.
“Our thoughts and sincere condolences remain with Mrs Spooner and her family at this very difficult time.”
The Welsh government told Sky News: “We rely on the expert advice of the National Institute for Health and Care Excellence (NICE) and the guidance of the All-Wales Medicines Strategy Group (AWMSG).
“The AWMSG published advice in 2019 which confirms that Xonvea is not recommended for use within NHS Wales, and NICE has published guidance on the management of nausea and vomiting in pregnancy and concluded that the evidence supporting the use of Xonvea is very old, of low quality and does not show a convincing effect on symptom improvement.”
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‘End this postcode lottery’
Charlotte Howden, who leads Pregnancy Sickness Support, told Sky News: “We welcome the mention of Xonvea and the postcode lottery at PMQs – it’s a vital step forward for the thousands of pregnant women and people suffering from nausea and vomiting in pregnancy.
“We’ve long called for urgent action on this issue. It remains an ongoing battle.”
Charlotte Howden from Pregnancy Sickness Support
She added: “Xonvea is the only medication licensed in the UK for pregnancy sickness, yet access still depends entirely on where you live. Many local formularies continue to reject it based on cost, even though a week’s supply is cheaper than a single GP appointment and vastly less than a hospital admission, which is all too common for those who become severely dehydrated.
“This isn’t just poor care, it’s a false economy. If the government is serious about prevention, long-term thinking, and equity, it must act to end this postcode lottery.
“A meeting with the responsible minister must now follow – and we are ready to share our evidence and experience to help drive meaningful change.”
‘Women deserve better’
Mr MacCleary told Sky News: “My own partner suffered with HG, so I know just how brutal and traumatic this condition can be. I first saw its devastating impact through her experience.
“Sadly, some women have even felt forced into terminations or have taken their own lives because they couldn’t get the treatment they needed – and this is entirely preventable.
“That’s why I asked the prime minister to urgently tackle this postcode lottery and meet with me and campaigners who’ve have been tirelessly working on this for years. Women deserve better – something must change.”
Lib Dem MP James MacCleary asked the PM to end the postcode lottery for Xonvea at PMQs
Sarah Smith, MP for Accrington where Ms Cronshaw lived, said her death “brings into sharp focus the devastating impact HG can have”.
She added: “Her story is heartbreaking and it underlines the urgent need to ensure fair access to treatments like Xonvea, wherever women live. I welcome the prime minister’s commitment to working with ministers on this issue and will support efforts to end the postcode lottery for women facing this condition.”
Anyone feeling emotionally distressed or suicidal can call Samaritans for help on 116 123 or email jo@samaritans.org in the UK. In the US, call the Samaritans branch in your area or 1 (800) 273-TALK.
