Hyperemesis gravidarum is severe sickness and vomiting affecting more than one in every 100 pregnancies. We hear from two women who have suffered hospitalisation, mental distress and physical complications because of the prohibitive cost of the medication prescribed for the condition
The profile of hyperemesis gravidarum (HG) was raised some years ago when Kate Middleton had the condition during her three pregnancies, and in recent weeks, there have been reports in the Irish media highlighting the fact that Cariban, the HSE’s recommended frontline treatment for HG, is not available on the medical card or drug payment scheme.
When you talk to women unable to afford their medication it’s clear the current system puts them in an impossible situation. In 2017, during her first pregnancy, when Clare Larkin (then aged 25), was diagnosed with HG, her prescription was beyond her budget, and what followed was relentless nausea and vomiting that saw her bed-bound for most of her pregnancy.
“From four weeks I couldn’t keep anything down so I was sent to hospital to get my fluids done. A nurse told me it was morning sickness and I’d have to get on with it. I couldn’t stop crying. It was like a non-stop horrendous vomiting bug, it was nothing like morning sickness,” she said.
A few months previously, Clare, who is from New Ross but lives in Waterford, had started a new job, and on the days she could drag herself in, it was tough going. “There was no toilet in the shop where I worked so I was being sick out the back in a box, it was humiliating. I was often too sick to go in and when my probationary period ended my contract wasn’t renewed.”
At six weeks when Clare was hospitalised to get IV fluids, she was diagnosed with HG and prescribed Cariban, but when the chemist handed her the bill, she was horrified. “I was told to take four tablets a day but myself and my partner Dale were struggling financially and I couldn’t afford to do that, so I took two tablets.”
During her pregnancy, Clare would be sick up to 20 times daily and was hospitalised 12 times for rehydration. A symptom of HG is weight loss. Clare weighed 14 stone 2lbs before she got pregnant, but during the pregnancy lost two stone.
“I would wake up hungry but it was impossible to eat and I got really scared my baby would be harmed. I could not even keep a vitamin down,” she said. HG is thought to affect 1 to 1.5pc of pregnancies each year, it’s on a spectrum and while most women are over the worst of it by 20 weeks, for Clare, and for around one in 10 women, the symptoms last until the birth.
At 37 weeks and four days Clare gave birth by C-section after being admitted to hospital the week before. When her son Harvey was born, the nausea lifted immediately. Although Harvey was small (6lbs 3oz), he was healthy, but for Clare it took a long time to emotionally get over HG.
“People told me it was great I had lost weight but it felt horrible because when I was pregnant I was totally unable to eat. It took ages to get over the trauma,” she adds. For subsequent pregnancies there is an 80pc risk of HG, and when Clare got pregnant again, she was diagnosed with HG.
Thankfully, this time has been easier. Her new employer has been supportive and from four weeks (when she was diagnosed) until 31 weeks into her pregnancy, Clare was taking the recommended four tablets a day as her friend abroad was posting them over. “I have only been hospitalised three times with this pregnancy because my friend has been able to buy the tablets for €20 a box in Spain and send them over so I could take four a day.
“I’m still wrecked, after I drop Harvey to creche I go straight back to sleep, but this time I can eat. Even if it is not the healthiest stuff, I can manage and I have put on two stone”, she says. But unfortunately, in recent weeks, Clare’s friend has been unable to send the Cariban.
“My friend was asked for a prescription so I’ve cut back to two tablets daily as that is all we can afford and I find I’m vomiting more. I had to go into hospital this week for fluids,” she said. Clare says HG left a lasting negative phychological impact on her and she was on antidepressants until last year. Unfortunately her story is not unusual and there is a large body of research linking HG with depression before and after the baby arrives.
Research in October 2020, from Imperial College London, found women who suffered from HG were eight times more likely to suffer antenatal depression, and four times more likely to have postnatal depression. The recommendations of the research were that in addition to treating physical symptoms, an assessment for mental health support should be routine.
This kind of awareness would be something women like Trish Lynch would have benefitted from. When Trish got pregnant in 2018 (then aged 29) she was convinced something was seriously wrong. “I was working in a warehouse but I was vomiting constantly and had to keep a bucket beside my bed. I was getting sick 20 times a day and soon after I couldn’t work and went to the doctor”, says Trish.
“When my GP told me I would feel better at 12 weeks, and to eat crackers and ginger, I felt like screaming, ‘will you not listen to me?’ I had not eaten for four days and could not stand up. I was sent into A&E to give a urine sample which showed I needed HG medication.
“I was sure it would be affordable and once I had the medication, all would be ok. I handed in my prescription and was told it was nearly €86 for two weeks and I had to pay all of it as it wasn’t on the Drugs Payments Scheme. I was out of work on unpaid sick leave, we were renting in Kildare and could not afford it, so I went without,” she says.
“What followed was traumatic. If I stood up or moved my insides somersaulted and I got sick. The mental toll was horrible. I was so anxious for my baby and would curl up in bed and cry all day. My husband Simon then lost his job and we moved into my parents’ spare room in Kildare. This meant I could start taking Cariban from 26 weeks and was able to eat foods like mashed potato, or soup, but I lost so much weight.
“When I got pregnant I weighed 106kg but this fell to under 80kg,” she adds. While the vomiting had eased, there were other complications. “At week 28 I got gestational diabetes and three or four times the baby stopped moving. They brought me in at 37 weeks for induction because she was below the sixth centile,” she said.
When Trish’s daughter Riley was born the nausea disappeared but then another problem suddenly appeared. “I was told I had been vomiting so violently it caused a hernia which had pushed part of my stomach up into my esophagus and an abscess had formed in my abdomen. When Riley was six months old I was hospitalised and had to stay in for six weeks,” Trish says.
“It felt like my life fell apart. It was a real downward spiral. The abscess kept coming back and I was in and out of hospitals for four months,” she says. “My mam had been caring for Riley with my dad and Simon, and they had to tell me how to look after my own daughter. I’d missed building a routine and bonding and this pushed me over the edge and I felt I didn’t belong in my own life. I had a breakdown, I began to self harm. At my lowest point, I contemplated suicide.
“I ended up on antidepressants and mood stabilisers, which I’m still taking. “All through the pregnancy I kept telling myself once she is here I can forget about the pregnancy but HG flipped my life upside down and I am still trying to put it back together. If I had been able to take the proper medication maybe I would be back now to where I was before.”
When Simon got offered a job in his hometown of Sligo, Trish and her family moved there, but so far she is still certified unfit for work by her doctors. “I’m 32 and because of HG my mental health feels shattered. Three years on the effects are still here. I’m terrified it will happen again if I get pregnant. If the drugs were free, or even affordable, it would make it more manageable mentally,” she says.
Dr Peter Boylan, a former master of the National Maternity Hospital, is a trustee of the charity Hyperemesis Ireland, which has been running a campaign, #HG2costly, to have the necessary medication reimbursed by the HSE. Dr Boylan says HG is extremely debilitating with some women requiring repeated hospital admissions, and while there are treatments to prevent this, they are not cheap.
“The first-line treatment is not included in the HSE’s reimbursable items. It makes sense to include it on humanitarian and economic grounds as outpatient management of excessive vomiting in pregnancy is much cheaper than hospital care,” he says.
Chief pharmacist at the Rotunda Hospital, Brian Cleary, says not enabling women to access the full range of treatment options for HG is unacceptable. “HG can have a profound impact on women. They have enough to deal with without worrying about being able to afford essential treatments,” he says.