Ahead of Cystic Fibrosis Ireland’s 65 Roses Day,
Almost Half of People with Cystic Fibrosis Surveyed Fear Health Impact of Contracting COVID-19

65 Roses Day Fundraising Appeal Goes Virtual as Collections Cancelled & Public Urged to Donate Online at 65RosesDay.ie

Date of issue: Thursday April 9, 2020

Cystic Fibrosis Ireland (CFI) has today published details of a survey of the cystic fibrosis (CF) community undertaken during the current COVID-19 pandemic. The survey canvassed the views of people with CF and their families on their concerns around COVID-19 and the challenges they are facing when it comes to daily CF care. The survey saw 300 responses in total (105 people with CF; 195 parents/relatives) and was undertaken in late March/early April 2020.

Among the concerns highlighted by respondents are the health implications of contracting COVID-19, the ability to access hospital care, the health impact of cocooning, and family worries about being infected and passing it on, or not being able to care for their loved one with CF (see below for details). Ireland has the highest incidence of CF in the world, with almost 1,400 people diagnosed with the disease. It also has some of the more severe forms of CF.

Tomorrow, Friday April 10, CFI is hosting its annual 65 Roses Day appeal. However, due to COVID-19, it has regrettably had to cancel collections and the selling of purple roses that would normally take place. Instead the campaign has had to go virtual with people being encouraged to lend their support by donating online at 65RosesDay.ie

65 Roses Day is CFI’s national fundraising day and was targeted to raise €200,000 to help fund essential supports and services now needed more than ever by people with CF. To show their solidarity with people with CF at a difficult time, many high-profile personalities have this year lent their support to the appeal by providing a personal snap of themselves featuring a purple rose. Among them are: An Taoiseach Leo Varadkar TD, Bethany and Serena Barr, Michael Carruth, Natalya Coyle, Rosanna Davison, Bryan Dobson, Adrian Martin, Muireann O’Connell, Arthur Lanigan O’Keeffe, Graham (O’Reilly) and Nathan (O’Toole), and Conor Ferguson, husband of long-time CFI ambassador, the late Keelin Shanley, with their children Lucy and Ben.

Survey Highlights
Among the survey’s findings are:

• Fear of contracting COVID-19: almost one in two (45%) people with CF fear contracting the disease and the potential health implications this may cause. Most concern is for those who already have severe respiratory problems and those with CF who are post-transplant. These fears are compounded by the lack of international data on the effects of COVID-19 on people with CF.
• Accessing hospital care: one in three (33%) people with CF are concerned about their ability to safely access hospital care, particularly if the COVID-19 emergency is prolonged.
• Cocooning & health impact: Over a quarter (27%) of people with CF are concerned about how long self-isolation will last and the implications on their physical and mental health.
• Medication shortages: one in six (16%) people with CF are concerned about potential medication supply issues or shortages, with 17% reporting practical issues accessing pharmacy services and 13% food shopping.
• Exercise concerns: for two in five people (39%) with CF, the most common practical challenge is the ability, or otherwise, to maintain regular exercise while in isolation. Exercise is a crucial part of CF health management and reduced opportunities to exercise could result in a negative impact on a person’s health in the longer-term.
• Family worries: one in four (28%) parents and relatives of people with CF fear contracting the virus and passing it onto their loved one; while one in seven (15%) expressed a concern about their ability to care for their children if they are infected.

Resilience Being Tested
Commenting on the survey, Philip Watt, CEO, Cystic Fibrosis Ireland notes:
“People with cystic fibrosis are resilient but this resilience is being severely tested by the COVID-19 crisis. From their long experience of having CF they are probably the most practised people in Ireland in relation to self-isolation and reducing the chance of catching an infection. However, there is considerable concern about the impact of COVID-19 the more the emergency is prolonged.

“For example, people with CF and parents are concerned about accessing hospital care and the impact this may have on health. This relates to accessing routine healthcare, as regular check-ups are being suspended for a long time in many CF hospitals at present. Regular, routine check-ups in hospital are an essential part of CF care and most of these are understandably suspended because of the emergency. Cystic Fibrosis Ireland warmly welcomes the efforts of many CF hospitals to have ‘virtual clinics’ in the absence of regular check-ups and the innovative use of modern technology, including a device that links to a mobile phone to measure lung function.

“Mental health and well-being are also a major concern in the event of a prolonged COVID-19 emergency. Right now, CFI is continuing to provide people with CF and their families with the information, advice and support they need at this very difficult time. This includes online counselling and patient grants for those experiencing financial difficulties. Calls are being made to CF members, and advice is being provided on a range of issues, from employment rights to access to medications and home intravenous antibiotics. Members are also being provided with hand sanitiser by Cystic Fibrosis Ireland when required, though these are difficult to source.

“People with CF and their families are already thinking about the inherent challenges in the transition back to normality – though this is likely to be many weeks ahead as things stand. There is a need to ensure that those who are medically at risk should be given prolonged financial support to cocoon even after others return to work and shops re-open. This could be a particularly dangerous time for those with CF. We take this opportunity to give heartfelt thanks to all the CF specialist health teams at this time, many of whom will also be actively involved in fighting COVID-19 with their respiratory expertise.”

Personalities Supporting 65 Roses Day from Home
CFI depends on the public for almost the entirety of its funding. 65 Roses Day gets its name from the way children often first say the words “cystic fibrosis”. Monies raised will go towards various services, including: patient grants for various supports such as counselling, fertility treatment, and transplant assessment, the cost of a number of CF clinical staff in hospitals, and helping to raise €1m for the new CF in-patient unit at Beaumont Hospital.

For Olympic gold medallist and Cystic Fibrosis Ireland ambassador, Michael Carruth, we need to support people with CF now more than ever:
“It seems we are all in the fight of our lives at the moment to combat COVID-19. For people with cystic fibrosis, who each year often have to do battle with a whole range of viruses, the fight is very real. To me, people with cystic fibrosis are some of the most inspiring people you’ll meet. They are gutsy and dauntless, and are determined to live their lives to the full. They should know that we have their backs. I urge people to support Cystic Fibrosis Ireland on 65 Roses Day, by donating online at 65RosesDay.ie, so that people with CF can continue to receive the services and supports they need, now more than ever.”

For Rosanna Davison, author, nutritionist and Cystic Fibrosis Ireland ambassador, this is a difficult time, but people with CF are strong:
“I have always been struck by the fact that we have the highest incidence of cystic fibrosis in Ireland, compared with the rest of the world, as well as some of the most serious types of the disease. Right now is a difficult time for everyone in our country. For people with cystic fibrosis, it is even more so. While we have all had to adapt our lives to accommodate new requirements, from hand hygiene to physical distancing, the reality for people with cystic fibrosis is that this has been the story of their lives. Of course, now the precautions that they are having to take are at a completely different level as they are one of the vulnerable groups that has been advised to cocoon. But people with cystic fibrosis are strong and they will get through this. We need to support them in doing that. I would encourage everyone to support people with cystic fibrosis on Cystic Fibrosis Ireland’s 65 Roses Day by donating online at 65RosesDay.ie.”

Virtual Performances on 65 Roses Day
65 Roses Day will see a number of artists streaming live performances on their social media channels including The Celtic Tenors, Paddy Casey and Isaac Butler, as well as comedy sketches from Katherine Lynch. During these performances, viewers will be encouraged to text FIGHT CF to 50300 to donate €4. Cystic Fibrosis Ireland will receive a minimum of €3.60. Service Provider: LikeCharity. Helpline 076 6805278.

To keep up to date on all the latest developments, follow CFI on Facebook at facebook.com/CysticFibrosisIreland, on Twitter @cf_ireland, and on Instagram @cf_ireland. #65RosesDay2020

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Issued on behalf of Cystic Fibrosis Ireland by: Don Delaney, tel. 01 910 8987 / 087 793 3249 or email don@d2communications.ie