Some desperately needed medications are currently not available under the drugs repayment scheme. I have been contacted about two drugs in particular - Ryeqo, a medication used in the post-operative treatment of women with severe endometriosis, and Skyclarys, a drug to slow the debilitating effects of the progressive life-shortening disease Friedreich's ataxia. I have contacted the Minister for Health about funding for both these drugs and all I get is a vague response saying that it under advisement and that the Government is looking into it, which ultimately feels like a "No". The process for the HSE to review these drugs is so long.

Ryeqo has already been refused for women experiencing moderate to severe uterine fibroids because it is not considered cost-effective. The Government is basically saying that helping people to reduce painful symptoms, ease heavy bleeding or slow the loss of their physical functions - basic things that prevent people from having a normal quality of life - does not offer value for money. For women suffering from severe endometriosis, Ryeqo is crucial for reducing their pain and slowing the growth of lesions. There has also been significant historical underfunding of endometriosis treatment and women's health in general so I really think we need to focus on this and redress it. Women who need Ryeqo must pay around €140 a month out of pocket on top of what they are already paying in astronomical rents, soaring energy prices, grocery bills or childcare costs because treating them publicly is not considered cost-effective.

What is the true cost of this disease when it is left untreated? A 2024 report from the UK estimates that the cost to the UK economy from people being off sick from work due to pain or heavy bleeding is about £11 million per year. The report also stated that if one extra pound per woman in England were invested in women's healthcare, it would generate £319 million for the state.

It pays to invest in women's health.

Approximately 200 people in Ireland are living with the neurodegenerative disease Friedreich’s ataxia. Skyclarys is the only known drug approved for treatment of this illness. One of those people is Emily, a 28-year-old woman from Kilkenny who has been living with Friedreich's ataxia since she was 16. She has gone from a life of running and dancing to now being wheelchair bound. Skyclarys has been shown to markedly improve neurological function in those with the illness. Based in Ireland, Biogen Idec is the manufacturer of Skyclarys. The HSE is weighing up whether it is worth it to fund this treatment, which could greatly improve the life of Emily and other people who are suffering from this condition. If they do not receive it, they will progressively experience vision impairment, hearing loss, slurred speech, aggressive scoliosis, diabetes and serious heart conditions. Without State help, Skyclarys can cost families around €300,000 a year.

The national rare disease strategy, which was published recently, made a recommendation on access to orphan drugs for rare diseases and the importance of improving access to those drugs. I accept that we simply cannot continue to pay never-ending amounts to drug companies that are making significant profit off people's illnesses, but we do need improvements to how drug repayments are made, the timelines around them and the different criteria that are included. It cannot just be about the economic benefit in the moment or the cost; it needs to be about the wider economic benefit. It needs to include things about people's quality of life and the criteria need to be broadened. I would like us to have a debate about that so we can ensure every person in Ireland receives the life-changing medical treatment they need without major financial obstacles.