Report Shows Major Improvements in the Lives of  People with Cystic Fibrosis over 20 Years – But Much More to Do

Date of issue: Wednesday, April 4 2018

A new and ground-breaking report on ‘Independent Living’ from Cystic Fibrosis Ireland (CFI) highlights major improvements in the quality and the length of lives of people with cystic fibrosis (CF) over two decades (1998-2017). The report shows that the sustained investment in better CF services and medications in recent years has made a very significant difference to those with CF in Ireland- but there is also much more that can and should be done. 

At the core of the Report ‘Independent Living and Cystic Fibrosis’ are two surveys undertaken by CFI in 1998 and 2017. Around one quarter of the adult CF population participated both surveys. Corroborative data was also drawn from other sources such as the CF Registry of Ireland. 

Amongst the key points noted in the report are:

• In 1998 adults with CF were not expected to be in any employment. In 2017, a remarkable 54% of those surveyed were in full-time or part-time work. 
• In 1998, 74% of respondents lived with their parents in their parents’ house. By 2017 this figure had reduced to 43%. 
• In 1998 adults with CF were not expected to have children of their own. In 2017 (thanks to better health and the introduction of IVF) 26% of the adult CF population aged 21 or over surveyed had children
• In 1998 only 8% of those surveyed were married, compared with 26% in 2017
• The percentage of those obtaining third-level qualifications has increased from 38% in 1998 to 49% in 2017 
• The median age of death in Ireland was only 17 years of age in 1998. By 2015 this had increased to 30 years for the first time.  

Philip Watt CEO of CFI stated:

“The findings are in many ways remarkable and send out a strong message of hope. The main message is that adults with CF are living much more fulfilled and independent lives in 2017 compared with 1998. They are much more likely to have a job, have better education attainment, to have their own home and to even have a family of their own.

“The improvements in length and quality of life are closely linked to improvement in services such as dedicated CF hospital centres which we have fought for; improved rates of double lung transplantation and more recently access to new ground-breaking drugs such as Kalydeco and Orkambi. The report shows that with sustained investment over a number of years people with a chronic and fatal disease such as CF can lead longer and better lives.” 

“However key gaps remain. The Government promised a dedicated CF in patient unit in Beaumont Hospital commencing in 2017. There has been no progress on this commitment in the Programme for Government and understaffing in major CF centres remains an issue.” 

The ‘Independent Living and Cystic Fibrosis’ Report covers a number of key issues:

Relationships and Housing

In 1998, 74% of respondents lived with their parents in their parents’ house. By 2017 this figure had reduced to 43%. 


In 1998, 87% of adults surveyed were ‘single’ compared with 39% in 2017. 

In 1998 adults with CF were not expected to have children of their own. In 2017 thanks to better health and access to IVF, 26% of the adult CF population aged 21 or over have children. 

Employment 
In 1998 adults with CF were not expected to be in employment because life expectancy was much shorter. However, by 2017, a remarkable 54% of those surveyed were in full-time or part-time work. These jobs range from journalism to the caring professions, from IT to accountancy. 

However, major challenges remain. 14% of all respondents in the 2017 survey remain  ‘too ill to work’. Many others said the potential loss of a medical card or sudden loss of Disability Allowance when entering a job remains a major deterrent to employment and independent living as their health comes first. 

There is also evidence of improved understanding by employers about the potential contribution of people with CF in the workplace. In 2017, 92% of people with CF surveyed were prepared to let their employer know they had CF compared with only 44% in 1998. However, the report also shows those in lower paid employment can still be treated callously by employers. 

Education and Mobility:
In 2017, people with CF are still missing out on school and college because of their illness. However, the percentage of those obtaining third-level qualifications has increased from 38% in 1998 to 49% in 2017. 

In 1998, 82% of those surveyed were reliant on public transport. By 2017 only 19% of journeys made by people with CF were on public transport. This reflects a much greater access to/ownership of cars and an increased wariness of the risk of infections in confined places, such as buses. 

Foreign travel: 
For leisure is increasingly the norm for people with CF, through travel insurance can be difficult to access at times.

Starting a family: 
The report shows that almost all men with CF and some women with CF will need IVF treatment to commence a family.  However, there are presently no state supports for the needed IVF treatment that costs about €5-6,000 a time.

The publication of the report comes ahead of the national fundraising day for Cystic Fibrosis Ireland, 65 Roses Day, on Friday 13th April. With funds raised helping people with cystic fibrosis to live independently in Ireland, the public is being urged to lend its support by buying a purple rose for €2 or donating online at 65rosesday.ie.

To download a copy of the "Independent Living and Cystic Fibrosis" Report, click on the image below.

Methodology

o   In 1998, 25% of the CF adult population in Ireland participated in the survey (n.83)

o   In 2017, 22% of the CF adult population in Ireland participated in the survey (n.145)

o   The 2017 survey was commenced in November 2016 and concluded in January 2017 

o   The survey respondents were drawn from all parts of the Republic of Ireland and their profile is consistent with the known CF demographic profile for those with CF

o   The survey data was authenticated by a former senior statistician in the CSO and by CFI staff

o   21 of those surveyed in 2017 were post-transplant – there would have be no-one post-transplant in 1998