COVID – 19 Updates for IDFNZ Patient Members
All IDFNZ and KIDS Foundation members - please don't feel you are alone even though you may be isolated at home; IDFNZ support services will continue on throughout the COVID-19 situation – members can email us if they have queries or if we can help in any way please get in touch.Check out our facebook page too https://www.facebook.com/pg/IDFNZKidsFoundation.
Any IDFNZ KIDS Foundation patient members that are
hospitalised are encouraged to let our support office know as we can assist
with continued hospital assistance. Email firstname.lastname@example.org
and we will contact you.
Check the IDFNZ Facebook too for further information and daily updates.
*Special note for PID patients on Immunoglobulin therapy - There is no need to stockpile supplies of immunoglobulin ; supply continues as normal.
Keep calm and keep safe.
Most Recent Update:
Post Covid Back to school Information May 15th
Is it safe for our medically fragile children to return to school?
School starts back today for most children, many of our families have asked if this is safe for medically vulnerable children.
IDFNZ recommendation is to weigh up risks, talk to your medical team or school principal about any concerns and explore all options available to you. Ask to view for yourself the precautions in practice before making a final call if need be – get all the facts you need to feel comfortable.
Starship has prepared a very informative letter covering off useful facts about COVID-19, advice around what is known about risks to transplant children and answering questions around return to school. This may be helpful for all member parents to read.
For PID patients it might also be helpful to view the attached UK immunology stratification of PID conditions as weighed against Covid-19, to better understand the specific risk for each condition. Further questions can be raised with your specific medical team.
ASCIA have also provided a new information brochure; This information has been developed for parents and carers, to guide decisions about school attendance for children with primary immunodeficiency (PID) during the COVID-19 pandemic.
Public health measures implemented by Australian and New Zealand governments have been successful in controlling the spread of SARS-CoV-2, the coronavirus that causes COVID-19. This means that plans are being made in most regions to re-open schools for face to face learning.
For parents of more vulnerable children, including those with PID, the decision to send their children back to school is complex. The type and degree of immunocompromise varies widely between children with PID, so it is important to ask your child’s clinical immunologist if you have specific questions.See brochure here for more details.
Covid -19 News Update April 29th , 2020
Over the last five weeks we have been able to support members by distributing information via our website and Facebook, as well as by email and over the phone. Thank you to everyone for keeping in touch and letting us know how we can help in these uncertain times. Families have done an amazing job of coping with life at level 4 and the outlook is optimistic with level 3 now in sight. The reality for immune compromised individuals however is that real caution needs to be maintained until a vaccine is available for the wider population, to reduce risk for the vulnerable in the community. IDFNZ will continue to provide information and resources moving forward with a regular e-news update to summarise new information as it arises. We hope this is helpful to you and encourage you to engage and respond to me with any questions.
NZ Immunoglobulin Supply
New Zealand Blood Service has assured that there is no shortage of plasma, no reason for individuals to stockpile. NZBS are working closely with plasma donors to ensure the supply chain is maintained, we are doing our bit to thank and encourage plasma donors as part of our Facebook posts – you can help by liking the posts, and adding notes of encouragement.
Individual Treatment Plans may be reviewed
NZ Immunology Specialists (NZCIAG), are looking after the interests of immunodeficient patients that rely on immunoglobulin therapy and liaise closely with NZBS. Please do not be alarmed if your treatment plan is reviewed.
In order to minimise opportunities for contact and potential infection with COVID-19 as well as preserving supplies of immunoglobulin, NZCIAG recommend that all patients receiving immunoglobulin should have their current treatment reviewed by their supervising consultant. If patients are well and their steady-state IgG is > 7g/L they recommend increasing dosage interval by an additional 1-2 weeks for intravenous and 2-3 days for subcutaneous.
This is a consensus decision involving adult and paediatric immunology services on a national basis, in conjunction with the Blood Bank. All patients will be closely monitored through this process – please let your doctor know if you have any questions or concerns.
Note : To be clear: SCIG/IVIG patients please carry on as normal,do not make changes unless specifically instructed by your medical team. Each patient will be reviewed by their Supervising consultants - it is their responsibility to decide any changes patient by patient.
NZCIAG have answered other questions raised by patients receiving immunoglobulin therapy:
I have really bad lungs and I am worried about not getting enough immunoglobulin
Your clinician will know whether it is OK to reduce the amount you get – some people will be on a dose where no reduction is appropriate.
What if I get sick when you change my dose?
It depends – if you catch a cold we won’t suggest any change. If the reduced dose is too low for you we can go back to your original treatment.
I’m scared about coming into hospital and getting infected?
Part of the reason for this change is to reduce the number of potential contacts that you have with people who may be infected. However, we have screening processes in place for all people entering hospital. You should contact your clinician if you become unwell before a planned appointment.
Will I get COVID-19 from immunoglobulin?
The process of manufacture of immunoglobulin (donor screening, testing, purification etc) means that there is no risk of becoming infected.
Will immunoglobulin protect me against COVID-19?
There is no evidence for this.
Further Q + A can be viewed on our IDFNZ website
ASCIA has listed similar information for Australasian PID patients.
Members can view similar questions raised by European PID patients listed on the IPOPI website
Remember IDFNZ is here to help – if you have further questions please get in touch
We are thinking of our members across New Zealand in these difficult times as this global situation escalates. Please keep safe and keep calm, the various Public health measure we see coming into effect may seem an inconvenience, but they are for your protection. Please do not panic but take all practical steps to protect yourselves.
March 24th Government raised the Covid-19 Virus alert level to level 3
Note: All IDFNZ patient members fall into the category of being immunocompromised, some members also have additional risk factors to consider.
For your safetywe urge you to heed this advice to self-isolate/ stay at home - it is important that friends and family, particularly children, do not visit.
For the moment this might mean talking to wider family on phone, Skype or other methods. Use online delivery services for groceries and essentials. All family members living in the same home should take precautions.
Keep in touch with your medical team with regards to accessing medicines and medical treatment.
Most Clinicians and General practitioners are now working from home and consulting by telephone, email, Skype or Telehealth. Many sent out texts, emails and notices over the weekend notifying patients that general outpatient clinics are being suspended and giving specific advice to individual patient groups.
Keep medical contact details handy. Do not turn up at your doctor’s surgery or hospital – contact by phone or email first to seek advice.
Should any member of your family be unwell or show symptoms call the dedicated Healthline 0800 number for COVID-19 health advice and information
The number is 0800 358 5453 (or for international SIMs +64 9 358 5453).
It is free and available 24 hours a day, 7 days a week.
People calling that line will be able to talk with a member of the National Telehealth Service. They have access to interpreters.
PID patients on Immunoglobulin treatment – New Zealand Blood Service have assured IDFNZ that they will be doing everything they can to ensure that the supply of plasma products continues as normal. In the medium term there is sufficient product in New Zealand or within the wider supply chain to cover us for at least 6 months. Note :There is no need to stockpile supplies of immunoglobulin.
NZBS is working with blood donors to try to ensure that they continue to collect enough blood and plasma to support the ongoing plasma product fractionation plan. They have begun emergency planning to ensure ability to provide future product is monitored very closely.
At the present time NZBS believe that they will be able to continue supply of essential product to all those that require it. We will keep you informed if that situation changes.
For your specific treatment regime - Please keep in touch with your nurse specialist / immunology team for instructions around IVIG hospital appointments, and SCIG plasma and consumable supplies. Our advice is to ensure you have consumables and product to last you at least 6 months.
IDFNZ holiday homes – Because our holiday homes are located in public Campgrounds, all bookings are hereby cancelled, and we are not taking any new bookings for your protection until further notice.
IDFNZ Patient Events and meetings – All events have been cancelled for the foreseeable future.
Please feel free to email any questions you may have to email@example.com – we will do our best to assist. Check our facebook and website for other updates.
Information for PID and
Immune compromised Patients in New Zealand
The Ministry of Health is monitoring this situation closely. All public health measures related to this virus are advised on https://www.health.govt.nz/our-work/diseases-and-conditions/novel-coronavirus-2019-ncov#statsu. There is lots of information and advice posted on this website - please keep checking.
Advice is to keep calm, but be vigilant as the situation unfolds. Patient members have asked how this affects the PID and
Immune compromised members of the community.
Coronavirus (COVID-19) Advice -Department of Clinical Immunology and Allergy, Auckland Hospital
Many types of coronaviruses exist, and they can infect both
people and animals. The current outbreak of coronavirus disease 19 (COVID-19)
started in mainland China, but cases have now been reported in many countries
worldwide including New Zealand. Ethnicity does not predict risk.
The main route of infection is by respiratory droplets, produced by coughing or sneezing. These droplets can land on surfaces and will remain infectious for a short time. Most transmission overseas has occurred within households. At the moment no cases in New Zealand have occurred from being infected from another infected person in New Zealand. There is no risk of infection from receiving immunoglobulin.
As yet there is no vaccine to prevent or treat COVID-19 and no medication.
Patients with immunodeficiency are generally at risk of infection, although it is unclear what the specific risks of COVID-19 are in this group. We don’t know if immunoglobulin has any protective effect against COVID-19. It does however protect against other infections, including seasonal influenza (the flu). Getting the influenza vaccine once it is available is also important.
Handwashing is the most important form of prevention. Soap and water should be used for at least twenty seconds; alcohol-based hand gel can be used if soap and water are not available. People should cover their nose and mouths when coughing or sneezing. Maintain at least 1 metre distance from people who are coughing/sneezing.
Surgical masks can help prevent those who are infected from infecting others. They need to be correctly used to be effective and changed regularly with proper technique. Current Ministry of Health advice is that these are only recommended for unwell people with respiratory symptoms (coughing/sneezing). High-level protective masks are being kept for hospital use.
Travel advice is changing rapidly and travel insurance may not cover people who travel to places with large numbers of cases. Depending on spread, people may end up having to self-quarantine for 14 days on their return. We advise checking the Safe Travel website (www.safetravel.govt.nz) for up to date information.
IF YOU ARE CONCERNED THAT YOU MAY HAVE COVID-19 PLEASE DO NOT COME IN TO HOSPITAL
Phone dedicated Healthline no. 0800 358 5453 Available 24/7, has interpreters
If you are unwell and have an appointment please phone before attending
Day stay: 0800 466 254 Outpatients: 307 4949 ext 27038 ( Auckland Hospital)
If you feel unwell and have an IVIG or other hospital clinic appointment scheduled please phone your clinic nurse specialist in advance to discuss .
Patients on Scig / IVIG treatment
Will I get COVID-19 from immunoglobulin?
The process of manufacture of immunoglobulin (donor screening, testing, purification etc.) means that there is no risk of becoming infected.
Will immunoglobulin protect me against COVID-19?
We don’t know. It will provide protection against other infections such as influenza that may make COVID-19 illnesses worse.
Can I get vaccinated?
There are no vaccines available yet for COVID-19. You can obtain influenza vaccine from your GP.
Should I wear a face mask?
Ministry of Health guidelines are that these are only recommended for people with respiratory symptoms (sneezing, coughing).
Should I get an N95 mask?
These are only recommended for in-hospital use.
Should I still travel internationally?
Travel advice is changing rapidly. Check with the Safe Travel website (www.safetravel.govt.nz) and your travel insurance.
Should I still go to work/school?
Close household contact with cases is the main risk. Certain types of employment (e.g. customs, healthcare, work requiring extensive overseas travel) may also be increased risk. You need to discuss this with your employer and your specialist.
Should I still come to my appointment?
Yes, unless you are unwell (phone first) or have been told to self-isolate.
I read this thing on the internet…
Much of what is being said on the internet and social media is inaccurate and unhelpful. Check authoritative sites such as the Ministry of Health (for NZ), the CDC, and WHO. The Immune Deficiencies Foundation (US) have a COVID-19 page for PID patients (https://primaryimmune.org/coronavirus).
If you have specific concerns not addressed here please discuss with your specialist
Starship Hospital -Pointers for Paediatric Liver Transplant patients
The situation is rapidly evolving and we can’t respond to multiple individual queries from families. The most up to date information will be on the MoH website and families should also have the Healthline number in case they need it. Just a few pointers:
- There are no specific recommendations regarding transplant patients. We suggest they are treated in exactly the same way as any other child at present. Reported cases from overseas do not suggest an increased rate of disease in immunosuppressed people and there have been very few cases in children, especially the under 10s.
- The most important thing that families can do over the coming weeks is to get their children vaccinated against influenza as soon as it becomes available. We would also advise that families consider getting flu vaccines for all household members.
- The country is running out of alcohol handgel. Soap and warm water are just as good. We recommend 20 seconds of washing which is the same length of time it takes to sing Happy Birthday twice. Hands must be dried, again for 20 seconds using a towel or paper clothes.
- We advise that families very carefully consider any overseas travel at this time.
- Any queries about whether children should be excluded from school or daycare should be addressed directly to them rather than us as they will understand the risks within their facility.
- Finally, we are offering patients the opportunity of telephone clinic appointments rather than physical appointments if they prefer this. However the risk of acquiring coronavirus at Starship Child Health at the moment is very low.
WHO Recommended Precautions
The World Health Organization’s and the Centers for Disease Control and Prevention’s recommendations to reduce exposure to and transmission of the coronavirus 2019-nCoV include but are not limited to:
· Avoid close contact with people suffering from acute respiratory infections
· Avoid close contact with anyone who has fever and cough
· People with symptoms of acute respiratory infection should practice cough etiquette (maintain distance, cover coughs and sneezes with disposable tissues or clothing, and wash hands) and wear a respiratory mask
· Frequent handwashing by using alcohol-based hand rub or soap and water, especially after direct contact with ill people or their environment
New Zealand MOH : For official updated local information refer to https://www.health.govt.nz/our-work/diseases-and-conditions/novel-coronavirus-covid-19
ASCIA information about COVID-19
The IDF USA web page also offers helpful updates including WHO reports: https://primaryimmune.org/news/update-video-helpful-resources-covid-19