Evanne Ní Chuilinn (Fine Gael) | Oireachtas source

Today, 15 May, is Hyperemesis gravidarum awareness day. Hyperemesis gravidarum, HG, is the medical name for extreme nausea and vomiting during pregnancy, which affects approximately 2% of pregnancies, so 1 in 50.

Unlike typical pregnancy sickness, it is highly debilitating with women often unable to work, look after their other children or leave the house or bed. It results in frequent hospitalisation and lasting physical and psychological effects. Some women choose to terminate their otherwise wanted pregnancies as a result. Without treatment, and in severe cases, it can be life threatening from a range of causes, including organ failure, venous thromboembolism, VTE, brain damage and suicide.

Recent research strongly suggests that HG is a genetic disease caused by an unusual sensitivity to the growth hormone GDF15, which is produced by the placenta in pregnancy. Physiologically, it is very similar to the extreme nausea and vomiting caused by platinum-based chemotherapies. Yet women, with the same levels of sickness while pregnant are often told it is normal and that is due to inconsistencies in care.

Cariban is one of the most common medications used to treat HG. Since August 2024, it has been available on the medical card and drugs payment scheme, which is a welcome development. That is due in large part due to the #HG2costly campaign by Hyperemesis Ireland.

The next focus for those campaigning on behalf of women suffering from HG is the publication of updated clinical guidelines for medical practitioners to help improve and standardise treatments. This report was due in the first quarter of 2024 and has not yet been released.

At the moment HG patients are navigating a system where early and appropriate access to care can depend on where you live and which doctor you happen to meet rather than how sick you are or what treatment you need. We have some excellent and, indeed, world-leading HG care in Ireland but this should not be restricted to just a few maternity units. It should be available no matter where and how a HG patient needs treatment. The updated clinical guidelines will help with this.

Improved HG care needs to be part of the next national maternity strategy to reduce the burden on patients, their babies and the health system. HG has multiple effects on the physical and mental health of the woman during and after pregnancy but also on babies born after a HG pregnancy. Much of this suffering and its associated costs to the health system is preventable with proactive, standardised and equitable access to HG treatment.

I would welcome a debate with the Minister to get clarity on a timeline for the publication of the updated clinical guidelines, and to ensure that improved hyperemesis care is included in the new maternity strategy.