COVID19 FAQs
22 Mar
Clinical care

COVID-19 and cystic fibrosis Q&A

24 March 2020 update

At 11.59pm on Wednesday 25 March New Zealand moves to COVID-19 level 4. New restrictions, especially for schools and non-essential businesses supersede some of the information provided in this Q & A.

We encourage everyone to stay up-to-date on the websites provided below and on our COVID-19 updates for the CF community page.

Most importantly, ongoing support is still available from our fieldworkers via phone call, text and email. Full contact details here. For medical advice please ask your clinical team.

The New Zealand Government also announced changes to its COVID-19 employer support programme that supports people financially. You can find more information on the Work and Income website.

Please also visit our Cystic Fibrosis New Zealand Facebook page for regular updates.


22 March 2020

Earlier this week we put out a request for questions from our CF community about COVID-19 and cystic fibrosis.

Most of the questions we received were for advice about attending school, work, self-isolation and the physical effect of COVID-19 for people with cystic fibrosis. We received an overwhelming response and because many similar questions were asked we have combined some of the questions if the answer covers the same information.

As most of you will appreciate this is a very fluid situation. This advice presents the best information possible to date but new information may alter recommendations relatively quickly.

Please read in conjunction with the latest Ministry of Health updates. Further information is also available on the New Zealand Government Unite against COVID-19 website. Please follow the Ministry of Health Guidelines for the most current information that may supersede this advice.

A list of reliable sources for further information is provided at the end.

 

Physical effect of COVID-19 for people with cystic fibrosis

Are people with CF more at risk of COVID-19 infection?

Information from the Ministry of Health and the Centers for Disease Control and Prevention (CDC) notes that people with a serious chronic medical condition such as lung disease are at a higher risk of getting very sick from COVID-19. This does not mean people with CF (PWCF) are at higher risk of being infected with COVID-19 but their symptoms may be worse IF they get it.

The Ministry of Health has a list of at risk populations of COVID-19 and includes:

  • People who have conditions that compromise their immune systems or who have compromised immune systems as a side effect of taking certain medications such as chemotherapy or other medications.
  • People who have chronic medical conditions such as liver disease, heart disease, kidney disease, diabetes mellitus, lung disease or other long-term conditions.
  • People with a disability and co-existing long-term conditions.
  • People who have medical devices that enter the body (e.g. a catheter, tracheostomy, ileostomy, feeding tube).
  • People with surgical or large wounds.
  • Frail older people.

Age is especially a risk factor and COVID-19 also seems to be more of a concern for males.

Read more: Information for disabled people and people who need support for daily life and their family/whanau


Is there anything people with underlying conditions such as CF can do to protect themselves better?

The Ministry of Health has recently released guidelines for immune-compromised people (section 6).

The Ministry of Health also urges people to start to be prepared for avoiding illnesses including:

  • Staying home as much as possible and avoiding crowds.
  • Avoiding shared/public transportation if possible, use a car or taxi.
  • Making sure you have access to several weeks of medication supplies in case you need to stay at home for an extended period of time.
  • Stocking up on basic household items and groceries to limit the number of trips to the supermarket or ordering your groceries online and having it delivered to your door.
  • Developing a plan for what you will do if people you rely on for support become sick. Talk to people who need to be included in your plan: household members, neighbours, other relatives, whānau and friends, support service providers and support workers.

If community transmission of COVID-19 is confirmed people with significant lung disease shouldn’t attend school and should work from home (see school and work sections below for more information).


Does COVID-19 affect the lungs of a person with CF differently? And what about transplanted lungs?

Because of underlying lung damage caused by CF, PWCF are at higher risk of developing more serious complications of COVID-19. Post lung transplant medications suppress the immune system so if you’ve had a transplant your risk of serious illness from COVID-19 is higher.

We recommend following advice from the Ministry of Health for immune-compromised people to minimise your risk of becoming sick with COVID-19. If you have had a lung transplant we recommend self-isolating as much as possible. Hospital clinic appointments are still important and you should speak with your transplant team for further advice.


Are there any cases of someone with CF getting COVID-19? If so, what should we expect and what’s the best plan of attack for treatment?

There has been no cases of COVID-19 in people with cystic fibrosis in New Zealand. Internationally there have been only a few cases; some have been hospitalised but stable and other people have remained at home.

Our Clinical Advisory Panel is in regular communication with international CF registries and keep up to date with international information.

People with CF are encouraged to keep up their regular treatments to keep themselves as healthy as possible. Talk with your CF care team for individual advice about your treatment plan.

The influenza vaccination is strongly recommended for everyone.


Do you become immune to COVID-19 or can you get it again?

Whether people develop immunity to COVID-19 is unknown at this stage but it’s thought unlikely.


I've heard that those who have good lung function and keep in good health will be okay but those with low lung function and poorer health could have problems? Is there a criteria/more risk to those with poorer health or is CF at high risk and do we know what the implications could be??

Staying as healthy as you can is important for recovering from illness, including COVID-19. Anyone is at risk of COVID-19 but people with chronic medical conditions such as lung disease are more at risk of becoming more unwell.


I’ve been told to avoid public places, but I can’t live inside until this virus goes away, what if it doesn’t go away?

While avoiding public places, especially poorly ventilated indoor areas is a good idea, you don’t need to self-isolate inside only. You can still go outside, go for a walk or bike ride by yourself, go for a drive in the car.

The idea is to minimise the amount of close contact you have with lots of different people while still remaining connected with other people. If you do meet with other people, keep a safe distance and use a non-touch greeting. Scroll down to the end of this article for some good alternative greetings.

Plan to meet outside where you can keep a safe distance more easily.

And remember, every time you arrive home from anywhere wash your hands as soon as you’re in the door. You need to wash your hands for at least 20 seconds which is longer than you think, so set a timer, sing the happy birthday song twice, whatever strategy helps you and your family.




Attending clinic appointments & coming into hospital

Should people with CF still attend clinic appointments?

Talk with your CF team before a clinic appointment if you’re concerned as they will have the most up-to-date information from their DHB and Ministry of Health.

Advice from the CFNZ Clinical Advisory Panel hasn’t changed since our 5 March update: People with CF should continue with the same basic precautions as usual during clinic or inpatient visits, including wearing a mask (advised), washing your hands when you enter and exit the hospital and maintaining a safe distance from others.


Are we still going to be attending clinics as usual, especially if/when it gets worse?

Most clinics are moving to virtual clinics which means your clinic team will ring you at home (and as the technology is running more smoothly it will likely involve more ‘zoom’ like meetings).

Virtual meetings will reduce the number of people coming to clinic, however some people will still need to be seen physically at clinic.

The situation is rapidly changing so things may change over the next days and weeks.


My husband is due an annual review, will they be putting these off?

The health of people with CF is the priority of your CF care team so they’ll be regularly assessing any risk of exposure. An annual review may be deferred in the first instance but the likelihood is at this stage people who need assessments because they’re unwell or for their annual review will be seen in clinic (with strict timings) but regular well clinics may turn into virtual clinics.

Because this is a rapidly evolving situation you will be phoned before your next clinic appointment with advice as to what is planned.


I’m concerned about being an inpatient in hospital. Am I at any extra risk of COVID-19?

Most cases of COVID-19 in New Zealand to date have self-isolated at home and haven’t received care in hospital. If more cases of COVID-19 in New Zealand needed hospital level care all hospitals have infectious disease protocols which staff follow with any infectious disease like COVID-19. These include the use of negative pressure isolation rooms, where the air from the room cannot escape outside, and standard droplet and contact precautions.

You should continue to follow the usual infection control guidelines recommended by your clinical care team when you’re an inpatient. Your CF care team will let you know if there are any changes to these guidelines.

 


Shortage of sterigel and masks  

Can CFNZ or the branches supply us with hand sanitiser? Can CFNZ purchase directly from a supplier for us to buy?

CFNZ has had difficulty in accessing hand sanitiser directly from the supplier. Please use soap and water which is readily accessible. It’s possible to make your own sanitiser using isopropyl alcohol.


How can we access masks such as the n95 masks for PWCF and other household members when it’s necessary for going out in public?

CFNZ is not able to access or supply masks. We recommend talking with your district health board but because of the limited supply these masks will be strictly limited even within the hospital. It’s unfortunately unlikely a supply can be found in the community.  

 


School

Should my child still be going to school?

This is a fluid situation and if community transmission occurs because it’s so close to school holidays it may be advisable to start holidays early and reevaluate after the holidays.

The holidays may be brought forward for the whole country.

New Zealand remains on COVID-19 alert level 2. Schools remain open but high risk people (as above) are advised by the Ministry of Health to remain at home. Parents and caregivers should continue to assess their individual situation against the Ministry of Health recommendations.


At what point do we pull our children out of school/preschool and self isolate?

This is a fluid situation and if community transmission occurs because it’s so close to school holidays it may be advisable to start holidays early and reevaluate after the holidays.

The holidays may be brought forward for the whole country.

New Zealand remains on COVID-19 alert level 2. Schools remain open but high risk people (as above) are advised by the Ministry of Health to remain at home. Parents and caregivers should continue to assess their individual situation against the Ministry of Health recommendations.


Should PWCF be concerned about attending university classes?

Most universities are looking to provide teaching online, for example the University of Auckland is having a free week beginning 23 March and will re-advise after that. The universities have good information on their websites and you should be receiving email updates. Closely packed lecture theatres should not be ongoing.


Should our children with CF be wearing a mask at school?

Masks at school are not likely to help.


How do we parents protect our kids during school hours if they're involved with other schools and out of school activities? We don't know who they’re in contact with?

Most of these events such as school trips and sports activities have been stopped in the short term.

New Zealand remains on COVID-19 alert level 2. Schools remain open but high risk people (as above) are advised by the Ministry of Health to remain at home.

Parents and caregivers should continue to assess their individual situation against the Ministry of Health recommendations.

Now might be a good time to talk with your school about general infection control guidelines for children with CF. To help, on pages 7 & 8 of our Starting School, A guide to cystic fibrosis for primary schools and teachers there is information about infection risks at school you can share with teachers and schools.

 


Work

What should I do as a CF person who works in retail? I can't just not turn up to work due to bills and normal life.

Continue good hygiene practices in the workplace and stay home if you’re unwell. If you have significant lung disease, or are immunosuppressed, once there is community transmission you may have to self-isolate. 

You may find our A guide to cystic fibrosis for employers helpful to give to your employer. While it doesn’t specifically cover COVID-19 there is general information about supporting an employee with CF.


I have CF and work in a pharmacy, I’m pretty healthy but should I be risking it?

Continue good hygiene practices in the workplace and stay home if you’re unwell. If you have significant lung disease, or are immunosuppressed, once there is community transmission you may have to self-isolate.


I’m a parent of a child with CF and work in a large organisation. How worried do I need to be about being around a lot of people?

The Ministry of Health released information for disabled people or people who need support for daily life and their family/whanau and noted people with chronic medical conditions such as lung disease are more at risk of COVID-19 infection.

Its recommendation is people might consider extra measures to put distance between yourself and others, for example if you work, speaking with your employer about the possibility of working from home.

The government has recently released a COVID-19 employer support programme. There are leave payments available to support people financially if they need to self-isolate, cannot work because they are sick with COVID-19 or cannot work because they are caring for dependents who are required to self-isolate or who are sick with COVID-19. This may help some individuals. Find out more 

Most businesses and organisations will also have their own guidelines for managing coronavirus but they may not address people with underlying medical conditions such as CF.

You may find our A guide to cystic fibrosis for employers helpful to give to your employer. While it doesn’t specifically cover COVID-19 there is general information about supporting an employee with CF and how a work environment, especially one that encourages people to not come to work if they are unwell, might help.

 


Self isolating

Should PWCF already be self isolating?

At the moment self isolation hasn’t been specifically recommended for people with CF in New Zealand. But it's a good idea to consider staying away from crowded spaces, especially inside areas with poor ventilation, and keeping your distance from people a bit more. New Zealand remains on COVID-19 alert level 2

And remember, self isolation doesn’t mean just staying inside at home. What it means is reducing physical contact with other people. You can still go for a walk or bike ride by yourself, go for a drive in your car and have people drop things off to you at.

 


Public transport

Should PWCF be using public transport?

No.

Should PWCF be flying, either domestically or internationally?

No.

 

Ventilator Guidelines

Some states in the US have come out with guidelines saying those with CF are not to be ventilated, should they need to be, due to COVID-19. Has NZ released similar guidelines? 

New Zealand does not have any guidelines about CF patients being ventilated during the COVID-19 pandemic.

New Zealand is fortunately not in the same situation that many other countries, including the USA, are in that demand for care exceeds resources. We’ve seen limited impact on our healthcare system from COVID-19 and it looks increasingly as though that will remain the case.

Dr Mark O’Carroll wants to reassure people with CF that they’ll continue to be provided with their usual care and emphasises it’s important for people to contact their CF team with any health concerns. Everything is ‘open for business’ and we want to make sure people don’t defer seeking help if needed. 

 

Further information

Unite against COVID-19, New Zealand Government

New Zealand COVID-19 Alert Levels, New Zealand Government

COVID-19 (novel coronavirus), Ministry of Health 

The Spinoff website – a range of articles written by New Zealand microbiologist Siouxsie Wiles 

Coronavirus COVID-19 outbreak, Health Navigator 

COVID-19 employer support, Work and Income New Zealand

Information for disabled people and people who need support for daily life and their family/whanau, Ministry of Health

 

For full cystic fibrosis COVID-19 updates visit the COVID-19 updates page.