CFI Statement re Soft Opt-out Organ Donation Legislation

Statement from Cystic Fibrosis Ireland re Soft Opt-out Organ Donation Legislation

The seven patient groups which are members of the Irish Donor Network (IDN) strongly support the announcement that the Cabinet has approved a proposal for the introduction of a Human Tissues Bill, including soft opt-out organ donation consent and altruistic kidney donation.

Philip Watt, Chairperson of the Irish Donor Network, and CEO of Cystic Fibrosis Ireland, welcomed the announcement:

“The proposed change in organ donor consent will optimise the availability of solid organs – kidney, heart, lungs, pancreas and liver – for transplantation. This means that more people will be given the gift of life of a transplant that has the potential to lengthen life and improve the quality of life.

“The legislation will also need to be accompanied by the necessary resources including funding for an online registry, an awareness programme to better inform the public about the proposed change, and resources to employ more specialised organ donation and transplant staff and to open pre- and post-transplant rooms.

“We know from research that the vast majority of the Irish population are willing to donate organs but, unfortunately, many have not registered that wish or spoken to their next of kin about organ donation. The new system will help to bridge that gap between wishing to do something and actually taking the steps to implement that wish.”

Under the proposed new system, the presumption is that people want to donate their organs, unless they explicitly opt out through an online register, or their family declines (hence called “soft opt-out” as opposed to “hard opt-out” where next of kin are not involved). It is a system which is already in place in almost every other country in Europe.

According to the latest report from Organ Donation Transplant Ireland, which is for 2018, there were:

  • 234 organ donations from 81 deceased donors in 2018, compared with 260 donations from 99 deceased donors in 2017
  • 522 people on waiting lists for liver, kidney, heart, lungs or pancreas transplants
  • 42 people died awaiting a transplant

The seven patient groups represented by the Irish Donor Network are the Alpha One Foundation, Cystic Fibrosis Ireland, COPD Support Ireland, Cystinosis Ireland, the Irish Heart and Lung Transplant Association, the Irish Lung Fibrosis Association, and the Pulmonary Hypertension Association Ireland.

ENDS

For further information: Philip Watt, Chief Executive, Cystic Fibrosis Ireland, tel. 01 496 2433 / 087 637 0557