We hope that you are keeping well and staying safe.
2020 was a year like no other and we want to say to you that Cystic Fibrosis Ireland, including our national office, our Board and our branches, continues to be here for you in 2021.
COVID-19 Update
Of immediate priority is the need for those who are medically vulnerable, including those with CF, to be vaccinated as soon as possible, while also being sensitive to the need for front line healthcare workers to be given first priority. CFI wrote to the Minister for Health before Christmas to urge him to give greater priority to those with CF and we will continue to advocate with you on this issue.
The COVID-19 pandemic has dominated public health policy and services throughout the year and at times has disrupted other health services, including CF services. CFI is very grateful for the continuing work of all health care professionals and in particular those involved in CF care in keeping services going in these most trying and extraordinary times.
There is no doubt that the next few weeks will be very challenging because of the increasing numbers of people being referred to hospitals for treatment for COVID-19.
CF Ireland are aware that changes are likely to take place to CF outpatient appointments due to the recent COVID-19 surge. Some clinics may defer appointments, or some may continue with remote telehealth appointments. We will endeavour to circulate general information as we receive it, but your team will advise you of any changes.
If you begin to feel unwell, please do not delay contacting your CF Unit directly. Contact details for all CF Centres can be here.
CFI Services & Supports
CFI continues to fund a number of front line posts including doctors, dietitians, psychologists, nurses and physiotherapists, that would not exist without our support. CFI branches play a key role in identifying the need and fundraising for these posts.
The support of CFI for vital health research is also of increasing importance and since the pandemic, there is increasing public knowledge as to why health research needs to be given greater priority in Ireland.
CFI will continue to provide advocacy, advice and supports in 2021 to the best of our ability and in this context the first call for CFI exercise grants will be issued shortly. We are also preparing a virtual ‘annual conference’ and a series of webinars on CF related issues for later this year.
The Board of CFI is presently discussing our strategic plan and we will continue to press for increased priority for vaccinations, the commencement of building of the adult in-patient unit in Beaumont Hospital an improved organ donor consent system; a fairer fertility support programme and increased opportunities for independent living among many other issues.
Kaftrio
One outstanding recent highlight was the commencement of the prescribing of Kaftrio in October 2020. As you will be aware, Ireland is among the first 4 countries in Europe to receive Kaftrio, along with the UK, Germany and Denmark.
In 2020 Dr Francis Collins, the Director of the National Institutes of Health (NIH) in the United States and leader of the team that discovered the CF altered gene more than 30 years ago, stated:
CFI understands that the prescribing of Kaftrio in Ireland is going well and more than one third of those who are presently eligible are receiving this very important drug therapy and many more will follow in 2021.
CFI continues to urge for the license of Kaftrio to be expanded when more data becomes sanctioned by the European Medicines Agency and we expect positive news in Quarter 2 of 2021 on this issue.
Please stay safe and take care in 2021 and we promise to continue to keep you updated on further progress in CF care over coming months.
Philip Watt
CEO
Cystic Fibrosis Ireland