“YOU might not have had hyperemesis yourself, you might not know anyone who has had it, you might not even know how to pronounce hyperemesis gravidarum, but that is exactly why we are asking the public to stand up and help these women be heard.’’
#HG2costly is a campaign recently launched by Hyperemesis Ireland. The charity says the desired outcome of the campaign is very simple: “Desperately ill pregnant women should be able to access HSE-recommended treatments without facing financial hardship.’’
Hyperemesis gravidarum is a complication of pregnancy causing sufferers to experience extreme levels of nausea and vomiting. It is not to be confused with, or compared to, morning sickness, which can affect up to 80% of pregnant women.
Hyperemesis is a less common and far more severe condition which often results in dehydration, significant weight-loss, malnutrition and, if left untreated, can be life-threatening. Women living with this condition face frequent hosìtal admissions and suffer a high degree of physical and emotional distress.
Hyperemesis Ireland is a registered charity and Facebook group offering support to the one in every one hundred or so women who will experience this debilitating condition in pregnancy.
The charity stresses that the first action any woman who believes she may be suffering from hyperemesis should take is to contact their GP.
“We do not offer medical advice, and are in no way affiliated with any drug company, but we can provide information about treatment options and services in your area to be discussed with your doctor.
“We also work to raise awareness of the condition with healthcare professionals to improve the care women receive.”
The charity has a number of medical trustees including Prof Brian Cleary, Chief Pharmacist at the Rotunda Hospital, and Sinéad Curran, Dietician Manager at the National Maternity Hospital.
The first line of treatment, recommended by the Health Service Executive (HSE), for hyperemesis is a combination drug of doxylamine and pyridoxine, marketed in Ireland as Cariban. Although routinely prescribed by Irish medical practitioners, Cariban is currently unlicensed in Ireland. This means that the treatment is not covered under the Irish Drug Payment Scheme (DPS), or by a Medical Card (GMS).
Women eager to avail of this treatment must fund the full cost of the medication which can, in some cases, run up to €2,000 per pregnancy.
Hyperemesis Ireland are contacted daily by women who are struggling to afford their prescriptions and this is the driving force behind the #HG2costly campaign.
The charity is calling for Minister for Health, Stephen Donnelly TD, to include Cariban on DPS and Medical Card schemes. The campaign has received support from many politicians including Dublin Lord Mayor, Hazel Chu. The topic has been discussed in the Seanad with leader, Senator Regina Doherty, describing it as a ‘false economy’ for the HSE not to reimburse first-line treatments for hyperemesis on the DPS, given that many women will be readmitted to hospital if they cannot take their medication.
Hyperemesis Ireland are urging the public to support this campaign by bringing it to the attention of their local politicians.
“A small number of women will have hyperemesis but their lives will be impacted hugely by it — physically, emotionally and financially. Please contact your TDs, tell them about #HG2costlys, tell them that you think pregnant women should be able to access HSE-recommended treatments for hyperemesis without facing financial hardship, and ask them to raise it with the MInister for Health and the HSE.”
Siobhan O’Connor, from Ballydesmond, North Cork, was admitted to hospital suffering from hyperemesis and severe dehydration in her fifth week of pregnancy. She was prescribed Cariban but struggled to afford the cost on the €159 weekly illness benefit was receiving.
“It was very expensive but it was the only thing helping to stop the vomiting. HG affected me drastically both physically and mentally, I’ve never felt like that before.
“I spent weeks on the couch barely able to look after my other two children. I joined the Hyperemesis Ireland group for support and I found it a great help knowing I wasn’t suffering alone. All the other women were highly supportive and helpful.’’
Tina Hemlock Coyne recalls the initial joy of her first pregnancy in 2015. “I was lucky enough to have married the love of my life and achieved my dream of opening my own millinery business, Elizabeth Christina Design. Having a baby was the icing on the cake.”
The multi-award winning milliner from Kinsale, Co Cork, found her joy was short-lived however. She began to feel unwell in her third week of pregnancy and her condition rapidly deteriorated. With her own GP away, Tina made an appointment with another doctor.
Unfortunately, she was then told she had morning sickness.
Knowing that what she was experiencing was far more severe, Tina returned to her own GP, who diagnosed hyperemesis and referred her to a consultant.
“At that moment I had no idea that the next eight months of my life would revolve around chronic throwing up, hospital stays and drips. Hyperemesis steals the joy of pregnancy.
“The vomiting was extremely violent and constant, day and night, anything from 40-50 times a day. The condition is relentless, there’s no let up, no sense of it easing.
“With nothing in your stomach and constant vomiting, you grow weaker and weaker. Between bouts of vomiting I couldn’t catch my breath, my husband would have to hold my shoulders and head up as I would struggle to grasp for breath.”
Cariban was not available as a treatment in 2015 and Tina credits her husband, family, in-laws and her consultant for supporting her through that first pregnancy.
“One of the biggest misconceptions surrounding hyperemesis is that it is some form of morning sickness.
“The reality is that they are worlds apart and this misconception has a huge impact on the mental health of sufferers. There is still huge ignorance surrounding hyperemesis, not only in the public domain but in the medical field also.”
Now pregnant with her second child, Tina is suffering from hyperemesis once again. The support she receives from Hypermises Ireland is invaluable.
“The advice and help these women have given to me is immeasurable. I’ve never known solidarity like it.”
With Cariban now available to her, Tina says the difference between her two pregnancies is like night and day. The cost of her treatment is €180 per month and while she feels fortunate to be able to afford the cost of the medication herself, Tina would urge public support for #HG2costly.
“This campaign is not just something that should be backed by current sufferers, but by everyone. Like all other diagnoses, no one knows its hardship until it comes to their own door.”
The vomiting was extremely violent and constant, day and night, anything from 40 to 50 times a day. The condition is relentless, there’s no let up, no sense of easing it.