Cystic Fibrosis Ireland (CFI) calls on Minister Donnelly to give greater vaccination prioritisation to people with cystic fibrosis at risk from COVID-19
Separately, CFI welcomes the inclusion of organ donor consent in the Spring legislative programme announced yesterday and calls on the Government to provide adequate funding for IVF as part of the forthcoming Assisted Human Reproduction Bill
Date of issue: January 14 2021
Philip Watt, CEO of Cystic Fibrosis Ireland (CFI), has today again called on the Minister for Health, Stephen Donnelly, to give greater vaccination priority to people with cystic fibrosis (CF) at risk from COVID-19. He stated:
“We have written to Minister Donnelly to seek to ensure that people with cystic fibrosis are given greater priority for COVID-19 vaccination, especially those with severe forms of the disease and those that have had a double lung transplant.
“Cystic Fibrosis Ireland notes that people with cystic fibrosis who are at very high risk in the UK are fourth on its priority list and all other people with CF are sixth, whereas all our patients are presently seventh on the list.
“There are 1,400 people with cystic fibrosis in Ireland. At the very least those people with cystic fibrosis who are very high risk should be vaccinated as soon as possible.”
Call for Fertility Supports for People with CF
Separately, CFI has welcomed two important pieces of health legislation – the Assisted Human Reproduction Bill and Human Tissue Bill – being prioritised as part of the Legislation Programme Spring Session 2021. Specifically, CFI is calling for the necessary funding to be put in place to support people with CF who want to have a family and who need fertility treatment supports.
The Assisted Human Reproduction Bill will provide a legislative framework for the regulation of assisted human reproduction practices and associated research. One of the lesser-known side effects of CF is infertility. Many women with CF are able to become pregnant and achieve a normal pregnancy but a significant number will need the support of IVF to become pregnant.
Of further relevance is genetic testing of an embryo prior to implementation which gives people with genetic diseases such as CF the chance to become parents without passing on inherited conditions. The procedure which is undertaken in conjunction with IVF is known as Pre-implantation Genetic Diagnosis (PGD).
Ireland is one of the few countries in Europe where people with CF do not have access to subsidised or fully supported IVF, which can require a number of repeated cycles. According to a CFI study in 2017, 26% of adults with CF are parents, a development that would have been unheard of 20 years ago. The cost of unsubsidised IVF treatment is prohibitive – around €6,000 for one cycle and upwards of €12,000 if PGD is included.
Philip Watt, CEO of Cystic Fibrosis Ireland, states:
“It is completely unacceptable that some people with CF seeking to become parents are potentially impoverished if they want to have a family. There is at present only a small government fund available to subsidise IVF treatment for all those with infertility problems in the general population, but this is completely inadequate. We are calling on the Government to ensure the necessary funding is put in place to support those people with CF who wish to have a family and who require fertility treatment supports.”
New Opt-out Organ Donation Legislation Welcomed
The Human Tissue (Transplantation, Post Mortem, Anatomical Examination and Public Display) Bill will provide an opt-out system of consent for organ donation.
Philip Watt, CEO of Cystic Fibrosis Ireland and Chairperson of the Irish Donor Network (IDN) stated:
“We welcome the decision by government to prioritise organ donor consent in the Spring Legislative Programme. Organ donation saves and transforms lives. Most EU countries are bringing in, or have brought in, a soft-opt out form of organ donor consent. Failure to secure consent for organ donor retrieval is widely regarded as the single most important obstacle to transplantation.
“This new organ donor consent system will replace the opt-in system that is presently in place. Under the new system, an online opt-out register will be available for those that don’t want to donate their organs. However, it is important to point out that the proposed new soft opt-out system in Ireland will still allow next of kin to be consulted before organ donation proceeds.
“Recent research from the UK has shown that an opt-out approach to consent has increased the availability of organs for donation. Wales introduced an opt-out organ donor consent system in 2016. Researchers compared deceased organ donor rates in Wales with England from 2016-2018 and concluded that organ donor consent rates in Wales were 2.1 times higher than England which had an opt-in consent system and 2.8 times higher in patients who had made no prior donation decision in life. The research showed that the change needed to be accompanied by a Government public awareness programme and the change in consent needed time to take effect. We have been promised this change in organ donor consent for some years now and this is another important step in the right direction.”
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For further information:
Philip Watt, CEO, Cystic Fibrosis Ireland, 087 6370557
References
[1] https://www.gov.ie/en/publication/32097-legislation-programme-spring-session-2021/