12 April 2020

Last week CFNZ Chief Executive Jane Bollard had a virtual meeting with the Child and Youth Cystic Fibrosis Clinical Network Clinical Reference Group. Together with the Clinical Advisory Panel we offer the following update for our CF community:

• Please continue to contact your CF care team as usual if you’re feeling unwell. Over the past couple of weeks CF clinicians have seen people with CF presenting later than normal, and therefore more unwell. Don’t hesitate to contact your CF clinical team if you’re feeling unwell – they continue to be available to help as usual during the COVID-19 pandemic and their top priority is to help keep you as well as possible.
  
  
• There are a few people around New Zealand starting Kalydeco. Please remember daily physiotherapy is very important as at the beginning of use of Kalydeco more physiotherapy has been found to be necessary.
  
  
• If you do need to come to hospital, all people with CF are screened for COVID-19. This includes a nasal swab, which although uncomfortable, is done very quickly. Results from the test are usually available in 24–48 hrs. You’ll also be asked questions about recent travel and any contact with people with COVID-19.
  
  
• If you’re admitted to hospital for treatment and before your COVID-19 status is known the doctors, nurses, physiotherapists and dietitians will be dressed in personal protective equipment (PPE). This is part of the COVID guidelines to protect both people with CF and health professionals. PPE includes long sleeved gowns, masks and gloves. If your test result comes back negative, the nurses will wear gloves and mask only but the doctors and physiotherapists will continue to wear PPE.
  
  
• Hospitals across the country are very well prepared to care for people with COVID-19 safely. Because COVID-19 arrived in New Zealand later than other countries health professionals had time to learn about managing COVID-19. Entering into level 4 lockdown when the number of people infected with COVID-19 was low has also helped minimise infection rates.
  
  
• The CFNZ Clinical Advisory Panel is in regular communication with international CF registries and CFNZ CE Jane Bollard is in regular contact with her counterparts in the UK, Ireland and Australia. Anecdotal evidence suggests people with CF who’ve been infected with COVID-19 don’t become sicker than people without CF and have managed the symptoms at home.
  
  
• International CF organisations are discussing how they'll record infection with COVID-19 for their data registries, including CFNZ and its Port CF data registry.

Stay up-to-date and connected with the CF community on our Facebook page. Our closed Facebook group is also a great support network for people with CF and their families.