Saturday 21 April 2018

Comment: We're at a watershed moment... Cystic Fibrosis is no longer a childhood illness

Patricia Duffy Barber, Chair of Cystic Fibrosis Ireland with President Michael D Higgins
Patricia Duffy Barber, Chair of Cystic Fibrosis Ireland with President Michael D Higgins
Patricia Duffy Barber, Chair of Cystic Fibrosis Ireland with President Michael D Higgins

Patricia Duffy Barber, Chair of Cystic Fibrosis Ireland

This week marks the launch of the Independent Living Report by Cystic Fibrosis Ireland. A report which I believe stands out as a vibrant piece of social research; a snapshot of life for our adults living with cystic fibrosis (CF).

Coming at a time when the Cystic Fibrosis Registry of Ireland is signalling a tipping point in the ratio of adults to children living with CF in Ireland we're at a watershed moment where we can state unequivocally that this disease is no longer a childhood illness.

As a child of the 70s, when I was diagnosed, gains were being made in understanding more about the diagnosis and progression of the illness but science struggled to identify the gene (it was only identified in 1989) and the cellular level changes at the root of our illness.

Treatment focused on managing symptoms with the available resources borrowed largely from asthma and other pulmonary conditions, and the difficulties with absorption and malnourishment were exacerbating any efforts to maintain good respiratory health.

The 1980s saw welcome advances with novel antibiotic combinations and new treatment regimes positively impacting the care of people with CF. Improvements came too late for some and despite a health service staggering under cutbacks, CF consultants and parents worked hard to sustain an emerging generation of teens with CF.

In 1997, the Cystic Fibrosis Association of Ireland (now Cystic Fibrosis Ireland) surveyed young adults to get a sense of life outside hospital and to find out about completing education and whether they would be able to work.

The responses showed the massive impact of illness on completing primary and secondary school, the high percentage of adults living in their parental home for health reasons, and the burden of treatment substantially impacting on the opportunity to take up regular employment.

 I too had a number of hospitalisations in secondary school and participated in that survey in my late teens, having just finished my Leaving Cert and starting college.

Patricia Duffy Barber, Chair of Cystic Fibrosis Ireland with President Michael D Higgins
Patricia Duffy Barber, Chair of Cystic Fibrosis Ireland with President Michael D Higgins

How much has changed since then. Personally, I have been able to complete my education at third level with a degree and professional qualification, enabling me to get a job practicing as a speech and language therapist. I moved out of my parents’ home, got married and have a seven-year-old son.

Having volunteered in different capacities with Cystic Fibrosis Ireland since then, I am currently the Chairperson and proud to represent ‘the oldies’ at almost 40 years old.

My experience wouldn’t reflect all adults with CF, but in many aspects the results of our survey of adults in 2017 shows us that many of my CF peers have survived to mid-life and some to their 50s. Improved treatments have helped people manage and proactively treat flare-ups. New drugs are now correcting the genetic defect at a cell level and have transformed everyday health for many of our people.

Others have required lung transplant to manage their illness and have benefited from the long campaign for the Mater Hospital transplant programme. Today, almost all of the in-patient care received is in dedicated units with minimal risk of infection, however, we still await the development of the increased capacity needed for Beaumont Hospital in Dublin.

Notwithstanding the constant treatment burden that is unfortunately part and parcel of life with CF for now, for many there have been improvements in health that have meant an illness that is less unpredictable, thus enabling people to work towards their goals of completing education, taking up employment, and enjoying relationships.

Of course, there are still barriers that prevent adults with CF from living independently: the financial burden of illness, including the cost of fertility treatment which can be a huge obstacle to starting a family; the inflexibility around medical card and disability allowance criteria when considering taking up employment; as well as problems with accessing housing, life and travel insurance.

The results make for a tale of a lot done, plenty still to do.

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