Hyperemesis: I wouldn’t be able to walk, talk, or work without Cariban
Sabrina Hill who is pregnant and suffering from severe moring sickness. Picture Dan Linehan
Last week, Cork hairdresser Sabrina Hill posted a very personal video on Instagram, of herself – in the intimacy of her bathroom – nauseous and getting sick.
Pregnant with her second child – her son Aaron is 21 – the 41-year-old influencer suffers from hyperemesis gravidarum (HG), a pregnancy complication in which women experience extreme levels of nausea and vomiting.
Pharmacist Laura Dowling aka Fabulous Pharmacist describes the condition as debilitating. “It is not normal morning sickness. The nausea and vomiting can go on all day. It can keep women out of work and because they can’t keep down food or water, they can end up hospitalised and on a drip.”
Sabrina, who is 27 weeks pregnant, says: “I’ve been very, very sick since the eighth week, so I’ve had about 20 weeks of being unbelievably unwell. Some days are horrendous. There’s no pattern or trigger that I can see. I could be driving and literally vomit into my lap.
“I could be dressed to go to work and, with the force of the vomiting, I’d vomit up blood and wet myself. I could vomit up to 10 times on a very bad day,” says the Kilworth-based mum, who owns Kopper Hair Salon in Cork city.
Last autumn, Sabrina could never have imagined that just weeks into the new year she’d take to Instagram to highlight what she described in her post as “the disgraceful lack of women’s healthcare in our country”. She would never have dreamed that she’d tag Health Minister Stephen Donnelly with a video of herself throwing up in her bathroom.
That’s because last September Minister Donnelly announced that €32.2m funding would be provided in Budget 2023 for Women’s Health Initiatives, to include dedicated funding for the HG drug Cariban.
But it didn't prove as straightforward as people would have liked. To understand why we need to go back to the start.
“I’ve been prescribing Cariban for years for HG. The big problem is it has always been incredibly expensive and there was no funding for it,” says Cork GP Phil Kieran, who describes how, after a lot of pressure, the Government’s decision to bring in funding was hailed as great news.
As an example of the widespread delight at the news among the HG community, another Cork woman, Tina Hemlock Coyne – who also suffered from HG – retweeted a post from Hyperemesis Ireland last September: “WOW! #Budget2023 to provide 'funding to facilitate reimbursement of Cariban'. Await full details but this looks like absolutely fantastic news! Thank you to the many, many people who helped us get here.”
But the euphoria was short-lived. When women visited their GPs in January, got a prescription for Cariban and presented in pharmacies, they found that, yes, the drug is reimbursable under the Community Drug Schemes – but only if the prescription is initiated by a consultant obstetrician.
In December, Minister Donnelly explained that Cariban is an Exempt Medicinal Product – not licensed with the HPRA in Ireland – and under the Community Drug Schemes, a prescription for such a product must be initiated by a consultant.
However, Sabrina Hill says there are several medications that aren’t licensed yet can be prescribed by a GP and are still covered under the Drug Payment Schemes (Dowling gives examples of two of these: regularly-used drugs amitriptyline for sleep/nerve pain/depression and bendroflumethiazide for blood pressure). So why, Sabrina wonders, can something similar not be done with Cariban.
Waiting for a consultant to sign off on a prescription for Cariban doesn't add up. Kieran explains why this is so. “A lot of the time HG starts in early pregnancy – and a lot of the time women don’t see their consultant obstetrician until week 16 of the pregnancy.
“With all aspects of the healthcare system creaking at the seams, making the prescribing of Calibran an administrative job that takes at least two doctors is ridiculous,” says Kieran, explaining that almost always a patient will come first to their GP.
“As a GP I then write a letter to get the consultant to see the patient and the consultant prescribes. It just wastes everybody’s time. It makes no sense clinically because you’re delaying treatment for a condition – where a woman can be vomiting multiple times a day – and you’re making it awkward for the patient.”
And what adds insult to injury is, as Kieran explains: “The drug is available over-the-counter in some European countries – though it’s still quite pricy.”
Dowling outlines the lengths women feel they have to go to so as to get hold of medication for a condition that has the potential to keep them bed-bound and toilet-bound. “With morning sickness you can live your life. You can’t live your life with HG."
Women, says Dowling, are being “forced” to see their obstetrician in the first trimester. “The maternity system is already overwhelmed. Women are now turning up in A&E looking to get this medication – and obstetricians are being pulled into A&E to provide it. The GP has been left out of the loop altogether, yet the GP is the first port of call for women. It’s poorly thought out.”
Of course the GP can prescribe Cariban, but then the woman buying it can’t be reimbursed. Dowling is explicit about how “prohibitively expensive” the medication is. “A box of 24 tablets is €35 – without a dispensing fee.” Women, she says, are generally directed to take four tablets a day so that the box will last six days. “Some women could be prescribed six a day, so it’s going to last just four days. And then if you lob a €9 dispensing fee on top of that…”
Even on Cariban, Sabrina Hill finds she vomits daily, but the medicine helps greatly. “I wouldn’t be able to walk, talk, or work without it,” she says. And while she has spent hundreds of euros on Cariban in a short few months, she considers herself lucky she can afford it and that she can afford to pay a private obstetrician and so get her prescription in a timely way. But she’s mindful of the women who aren’t so lucky.
Since her video post last week many women have messaged her, saying they can’t afford their monthly prescription and are suffering severely.
“One woman spoke of vomiting just after she’d taken Cariban and she could only afford two weeks' supply. And she put her hand down into the toilet bowl to retrieve the tablet. That’s how precious that tablet was to her.
“Another woman told how she went to her pharmacy and found out the cost of Cariban and she just started crying in front of the pharmacist – it was either pay for her weekly shop or pay for her medication. Because when they tell you it’s ‘quite expensive’ you think expensive is €40 or €50 – you don’t think it’s in or around €200.”
Kieran says that – prior to last autumn’s news that funding would be provided for Cariban – about two-thirds of the women whom he would have recommended take Cariban bought it immediately. “But many of them weren’t able to continue it because of the expense. Only about one in 10 would have continued to take it.”
Describing how mystified he is that a GP can’t initiate a reimbursable prescription for Cariban, Kieran says: “From a clinical point of view, I can’t think of any good medical reason why GPs shouldn’t be allowed to initiate a prescription. Cariban has been around for decades and is deemed very safe in pregnancy. In January, I thought I could initiate a prescription. It wasn’t communicated to us [GPs] that we couldn’t.
“It’s very frustrating when you have a patient with severe symptoms and you know there’s a treatment available but you’re left holding your empty hands to them because of administrative issues.”
As a pharmacist, Dowling sees firsthand how HG affects not just the afflicted woman but everybody she comes in contact with. “If the woman is in and out of hospital she may be away from her young children. I know of one four-year-old, traumatised at witnessing his mum getting sick over 20 times a day. It affects a woman’s relationship with her partner and the day-to-day running of the household. Some women have to give up jobs because they can’t work.”
Citing as yet one more hoop that women must jump through to get hold of Cariban, she says the prescription needs to be re-approved by the consultant after three months. “It’s as inaccessibly accessible as it can be because women are being made to jump through all these hoops to get it.”
Hyperemesis Ireland has the following information on the condition:
Unlike regular pregnancy sickness which affects 70-80% of pregnant women to some degree and which is considered a normal, if unpleasant, part of pregnancy, HG isn’t normal and can be potentially life-threatening without adequate treatment.
Around one in 100-150 pregnant women will be admitted to hospital due to the dehydration and malnutrition that HG can cause. Many more will need time off work due to nausea and vomiting.
HG is a biological condition though causes have yet to be fully understood.
The common belief that medication should never be used in pregnancy isn’t true and leads to a significant amount of suffering when treatment for severe HG symptoms is refused. There are safe guidelines doctors can follow for prescribing medications such as Cariban.
CONNECT WITH US TODAY
Be the first to know the latest news and updates
Celebrating 25 years of health and wellbeing
