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Newborn Screening for Severe Combined Immune Deficiency (SCID) Frequently Asked Questions

This document has been developed by ASCIA, the peak professional body of clinical immunology/allergy specialists in Australia and New Zealand. ASCIA information is based on published literature and expert review, is not influenced by commercial organisations and is not intended to replace medical advice.         

For patient or carer support contact AusPIPSHAE AustralasiaIDFA, or IDFNZ.

pdfASCIA PC NBS SCID FAQ 2024114.27 KB


Q 1. Why are SCID newborn screening tests performed in Australia and New Zealand?

Severe combined immune deficiency (SCID) is a group of genetic immune system disorders, with low or absent T cells. T cells are a type of white blood cell that fights infection. This means that babies born with SCID have a high risk of infections.

Around 1 in 60,000 babies born in Australia and New Zealand will have SCID. Newborn screening for SCID allows these babies to be diagnosed and treated early, which improves long term outcomes.

Newborn screening for SCID also enables early life saving treatment with bone marrow transplantation. This can cure SCID if performed early, before babies with SCID have life-threatening infections.

Q 2. How are SCID newborn screening tests performed?

All babies born in Australia and New Zealand will have some blood taken from their heel in the first few days of life. This is tested for a range of rare medical conditions that are serious but treatable, including SCID. Early diagnosis of these conditions allows doctors to start the correct treatments before symptoms occur.

Q 3. When are further tests needed?

If there is an abnormal or borderline result from the SCID newborn screening test, further tests will be needed to confirm if your baby has SCID, or delayed development of their immune system, or another medical condition. It is also possible for some babies to have a normal immune system, but an abnormal or borderline newborn screening test result.

The only way to find out what your baby’s result means is to have further tests.

While waiting for results of further tests, your baby should not receive any live vaccines, such as rotavirus. It is also important for you and your baby to avoid contact with people who are unwell, including people with cold sores or skin infections.

If further tests show that your baby has enough T cells, and does not have SCID or other medical conditions, no more tests are needed, and your baby should receive their routine vaccines.

If you have any concerns, please discuss these with your doctor, midwife or other health professional. 

© ASCIA 2024

Content developed January 2024

For more information go to www.allergy.org.au/patients/immunodeficiencies

To support allergy and immunology research go to www.allergyimmunology.org.au/donate

Content created 11 January 2024

Subcutaneous Immunoglobulin (SCIg) Therapy General Information

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Immunoglobulins (commonly known as antibodies) are used to treat adults and children with primary immune deficiencies (PID), also known as inborn errors of immunity, and other medical conditions, who are unable to make enough of their own antibodies, or who have antibodies that don’t work properly.

Replacing these antibodies helps to protect against infection and can prevent long term damage from ongoing infections, such as chronic lung disease.

What is SCIg?

Subcutaneous Immunoglobulin (SCIg) infusions are given by slowly injecting purified immunoglobulin into fatty tissue just underneath the skin. SCIg:

  • Requires frequent administration (ranging from 1-3 times per week to once a fortnight) by patients or carers at home.
  • Involves slow diffusion of IgG from subcutaneous tissue.
  • Is associated with more consistent serum IgG levels due to frequent administration.
  • Is administered at multiple injection sites according to personal preference, usually in the lower abdomen. However, the outer edge of the thigh or back of the upper arm can also be used.

How are SCIg infusions given?

SCIg can be given at home using:

  • Mechanical infusion pumps - spring loaded or battery powered.
  • Push method - a manual method that does not require a pump, with the infusion pushed by hand through a syringe.

Immunoglobulin products are safe

SCIg is very well tolerated and safe. SCIg is made from plasma (the liquid part of blood), which comes from blood donors who are checked to make sure they are healthy and do not have certain infectious diseases.

Manufacturers also include steps in the processing of blood or plasma that inactivate or remove viruses.

This means that there is an extremely low (almost zero) chance of the transmission of blood borne viruses (such as Hepatitis B, Hepatitis C, HIV and Variant Creutzfeldt-Jakob disease (also called “mad cow disease”) via SCIg.

What are the risks associated with SCIg?

Reactions or side effects to SCIg include:

  • Common injection site reactions such as redness, swelling and itching.
    • These are usually mild and go away over a day or two.
    • Reactions are generally worse with the first few infusions and get better over time.
    • Most itching is resolved by slowing the infusion.
  • Uncommon side effects such as headache, feeling hot, nausea, diarrhoea, sore throat, rash, increased cough and back pain.
    • These are usually mild.
  • Extremely rare and serious side effects such as allergic reactions, kidney problems or blood clots.

If a reaction occurs you must inform your nurse specialist or doctor as soon as possible and get advice before having any more infusions.

For information about managing reactions see pages 6 and 7 of this document.

What needs to be done before starting SCIg?

ASCIA Transfer Care Plan for patients Before you start on SCIg, your nurse specialist will provide you with information and training on how to give SCIg at home. Nurses play a crucial role in educating and supporting people who are being treated with immunoglobulin products.

You will need to sign a consent form to say that you understand the need for treatment and the chance of reactions that may occur with the treatment.

An ASCIA Transfer Care Plan for patients is available at www.allergy.org.au/hp/papers/ascia-transfer-care-plan-irt

This plan has been developed as a medical document to be completed by an immunology or nurse specialist, when a patient is transitioning from:

  • Paediatric to adult medical care.
  • One region to another.
  • IVIg to SCIg.
  • SCIg to IVIg.

Choosing a SCIg infusion site

SCIg injection sitesUsing the same site for infusions can help reduce the amount of local swelling and redness that can occur after an infusion.

However, multiple (2-3) sites can be used on a rotating basis, according to patient preference.

Rotating the infusion site is preferable for some patients and this may reduce the risk of scar tissue developing.

SCIg injection sites are usually in the lower abdomen, but the outer edge of the thigh, buttocks or back of the upper arm can also be used. Avoid bony areas such as the hips.

When using the lower abdomen in adults and most children, the needle should be inserted at least 5cm away from the belly button.

If using more than one site at a time, make sure they are at least 5cm apart.

Note: Do not insert the needle where the skin is scarred, bruised, broken or inflamed (such as eczema).

Before infusion it is important to have your equipment ready – see the ASCIA Subcutaneous Immunoglobulin (SCIg) Equipment Checklist  www.allergy.org.au/patients/immunodeficiencies/scig-therapy-equipment-checklist

An ASCIA Subcutaneous Immunoglobulin (SCIg) Infusion Checklist is also available at www.allergy.org.au/patients/immunodeficiencies/scig-infusion-checklist

It is recommended to have a cold pack, a non-drowsy antihistamine and an analgesic (pain medication) available in case of a mild reaction.

Examples of SCIg infusions are shown below.

SCig infusion   SCig infusion

Documenting the SCIg infusion

Patients should record the following details in a SCIg infusion diary, which can be shown to the nurse or medical specialist:

  • Brand of SCIg product.
  • Batch number/sticker.
  • Date and time of infusion.
  • Time taken for infusion.
  •  Date
  • Reactions to infusion.
  • Problems with product (e.g. visible particles - not used and returned).
  • Unused or wasted product (e.g. spilled/damaged or infusion stopped due to adverse reaction).

Ordering, collection, transport and storage of SCIg

  • Use the ASCIA SCIg Treatment Plan, which is available on the ASCIA website allergy.org.au/hp/papers/ascia-scig-treatment-plan
  • SCIg product needs to be ordered in advance.
  • Your nurse specialist or doctor will explain how and where to collect the SCIg product and this should be included in your SCIg treatment plan.
  • SCIg must be kept cool (2-8°C) for the journey home:
    • When collecting SCIg you must provide a cool box or cool bag large enough to transport vials with an icepack. Ensure SCIg vials are not in direct contact with the ice, to avoid possible freezing.
    • Take SCIg home immediately and place in a sealed container in the central part of the refrigerator.
  • Storage temperatures are dependent on product choice - your nurse specialist will tell you how to store the SCIg product you are using. However, the following principles should be followed for all SCIg products: 

scig tickStore SCIg in original packaging until needed, and protected from light
scig tickStore SCIg between 2°C and 25°C and avoid extreme temperatures. 
scig crossDo not freeze SCIg  - never store below 2oC and do not use SCIg that has been frozen. 
scig crossDo not shake SCIg.

If you have a power or refrigerator failure and are unable to keep SCIg refrigerated:

  • Contact your nurse specialist as soon as practical for further advice.
  • If fridge is still cold, keep your supply in the fridge.
  • If the fridge is no longer cold, place SCIg in your transport cool box or cool bag with an ice pack.

Product from a vial is for single use only

  • Once the vial is opened, SCIg needs to be used as soon as possible as the product does not contain preservative.
  • If an infusion cannot be completed within the recommended time (which varies between 2 and 4 hours for different products), any unused product should be discarded.
  • All SCIg vials must be disposed of in the sharps container provided by your hospital. These should be returned to the hospital or pharmacy. SCIg vials must not be discarded in your household bin.

SCIg Products

There are currently three different brands of SCIg available in Australia and New Zealand:

  • Hizentra® - CSL Behring
  • Evogam® - CSL Behring
  • Cuvitru® - Takeda 

SCIg Product - Hizentra®

  • HizentraOnce removed from the refrigerator, store Hizentra® between 2°C and 25°C and use until expiry date.
  • Hizentra® is a clear, pale yellow to light brown solution.
  • Do not use if the solution is cloudy or contains particles.
  • Complete Hizentra® infusions within 4 hours of starting infusion.
  • For instructions go to https://www.nps.org.au/medicine-finder/hizentra-vial

SCIg Product - Evogam®

  • EvogamOnce removed from the refrigerator, store Evogam® between 2°C and 25°C and use within two weeks.
  • Evogam® is a clear, pale-yellow to light brown solution.
  • Do not use if the solution is cloudy or contains particles.
  • Complete Evogam® infusions within 4 hours of starting the infusion.
  • For instructions go to https://www.nps.org.au/medicine-finder/evogam-solution-for-injection 

SCIg Product – Cuvitru®

Cuvitru

  • Store between 2ºC and 8ºC, this is a change from below 25ºC.

  • The shelf life is now 36 months, this is an increase from 24 months.
  • Cuvitru® is a clear and colourless to a pale yellow or light brown solution.

  • Do not use if the solution is cloudy or contains particles.
  • Complete Cuvitru® infusions within 2 hours of starting the infusion.
  • For instructions go to https://www.nps.org.au/medicine-finder/cuvitru
  • Note: The National Blood Authority (NBA) advises that Cuvitru is transitioning to a revised temperature and storage requirement from 12 September 2022 in accordance with product registration changes on the Australian Register of Therapeutic Goods. Future Cuvitru stock will be labelled to specify the revised shelf life and temperature storage requirements.

Checking SCIg vials before an infusion

All SCIg vials should be checked for the following prior to an infusion:

  • Expiry date on the vial - DO Not Use if out of date.
  • Protective cap is in place - DO Not Use if seal is broken.
  • Solution in vial is clear - DO NOT USE if solution is cloudy, discoloured or contains particles.

Contact your nurse specialist if any of the above happens.

Use of SCIg when unwell, pregnant or breastfeeding

Contact your doctor or nurse specialist for further advice if you:

  • Are unwell with a fever.
  • Suspect you are pregnant.
  • Are breast feeding.

Your doctor and nurse specialist will work with you to develop a plan to respond to any adverse reaction.

SCIg and vaccinations

Some immunisations may not be required while on SCIg. Discuss this with your doctor.

Travelling with SCIg

ASCIA SCIg travel planPeople travelling with SCIg should:

  • Plan well in advance before travelling.
  • Obtain advice from their doctor or nurse specialist before travelling, especially overseas, as an export permit may be required.
  • Use the ASCIA SCIg Travel Plan, completed by their nurse or medical specialist Travel Plans are available on the ASCIA website www.allergy.org.au/hp/papers/ascia-travel-plan-for-scig-patients
  • Take their SCIg Travel Plan and Treatment Plan in hand luggage.
  • Consider having a dose of Intravenous Immunoglobulin G (IVIg) before travel, which may be a convenient alternative.
  • Consider having extra SCIg infusions before and after the trip, for shorter periods of travel.
  • Pack SCIg in hand luggage when flying, whilst maintaining the cold chain and remembering to collect it before they leave the plane. SCIg must not be put into checked-in luggage.
  • Carry pain medication and a non-drowsy antihistamine in case of adverse reactions.
  • Take enough consumable equipment for the time they are away from home.
  • Pack enough SCIg for the trip and store this in original packaging until needed, in a cool box or cooler bag. It is important to keep SCIg at an appropriate temperature as specified for the product, at all times. Patients should check product information, and if uncertain, check with their nurse specialist. SCIg should never be stored below 2°C or above 25°C.

Managing side effects of SCIg

Swelling side effects SCIgCommon local reactions at the infusion site include:

  • Mild or moderate swelling (egg sized lump).
  • Hardness.
  • Blanching (whiteness).
  • Redness at the infusion site.

These reactions are normal and short lived, usually gone by the next day. They are more common in people who have just started SCIg, especially in the first few months.

Most people start to notice a decrease in local reactions after about 8-10 weeks.

Over time, the skin will “get used” to the repeated infusions, and local reactions will lessen.

Using the same SCIg infusion site versus rotating sites

Using the same site for SCIg infusions can help to reduce the amount of local swelling and redness that can occur after an infusion. However, rotating the infusion site is preferable for some patients, and may reduce the risk of scar tissue developing.

General steps to take if an infusion site reaction occurs

infusion site reaction actionIf an infusion site reaction occurs, you should:

  • Apply gentle massage and warm or cold pack (according to your personal preference) to reduce discomfort. An ice pack should not be applied for four hours post infusion to ensure adequate absorption.
  • Not rub or scratch the infusion site.
  • Record site reactions in an infusion diary.
  • Report unusual site reactions, such as extreme pain or discomfort, blistering or spreading redness to your nurse specialist.
  • Refer to the table below for different ways to manage reactions or problems at the infusion site.

Management guide for SCIg infusion site reactions and problems

Site Issue

Possible Cause/s

Management Options

Redness

Common reaction, which usually settles over 24 hours.

If redness is excessive:

  • In some cases it may be due to an allergy or sensitivity to tape. 
  • Needle may not have been inserted correctly or needle may be too short.
  • If it does not cause discomfort, do nothing.
  • Warm or cold pack for short periods may help with discomfort
  • Wrap warm/cold packs in a cloth - do not apply directly to the skin
  • Slow the infusion rate if uncomfortable
  • Try using an over the counter non-drowsy antihistamine
  • Check correct needle placement/length with your nurse specialist
  • Consider alternative tapes/dressings to secure needle/s with your nurse specialist

Swelling

Common reaction, which usually settles over 24 hours, resulting from the amount of fluid being infused underneath the skin (amount of swelling should relate to the volume being infused).

  • If it does not cause discomfort, do nothing
  • A warm pack for short periods may help with absorption.
  • A cold pack for short periods may help with discomfort, but delays absorption 
  • Wrap warm/cold packs in a cloth - do not apply directly to the skin
  • Take a walk to help with absorption
  • Check correct needle placement/length with your nurse specialist
  • May need to decrease volume at the site, reduce the rate or change the infusion site. This should be discussed with your nurse specialist

Itching or burning

  • Incorrect needle placement
  • Incorrect needle length
  • Irritation from tape
  • Ig at needle tip, causing skin irritation
  • Do not scratch or rub
  • Check needle placement and length
  • Try using an over the counter non-drowsy antihistamine
  • Consider alternative tapes/ dressings to secure needle/s
  • Apply cold pack for short periods - wrap pack in a cloth - do not apply directly to the skin
  • Discuss dry priming with your nurse specialist

Pain with infusions

  • Incorrect needle placement
  • Incorrect needle length
  • Infusion going too fast
  • Check needle placement/length
  • Apply cold pack for short periods - wrap pack in a cloth - do not apply directly to the skin  
  • Slow infusion rate
  • Try simple pain medication (such as paracetamol) before starting the infusion
  • Take a walk to provide a distraction
  • Check tape placement for pulling on skin or body hair
  • Discuss with your nurse specialist

Blanching (whiteness)

Normal tightening of tissue that can occur as SCIg infuses into the fatty tissue under the skin.

  • Do nothing, usually goes away on its own when the fluid is absorbed
  • Warm pack for short periods (may assist absorption) - wrap pack in a cloth - do not apply directly to the skin

Leaking from the infusion site

  • Incorrect needle insertion
  • Incorrect needle length
  • Amount of volume infused at the site
  • Check needle insertion
  • May need to consider changes to volume, needle length or rate of infusion.
  • Speak to your nurse specialist or doctor.

Management guide for other reactions to SCIg 

Management guide for other reactions to SCIg

© ASCIA 2022

Content updated September 2022 

For more information go to www.allergy.org.au/patients/immunodeficiencies

To support allergy and immunology research go to www.allergyimmunology.org.au/donate

ASCIA is the peak professional body of clinical immunology and allergy specialists in Australia and New Zealand

Disclaimer

This document has been adapted with permission from resources developed by Perth Children’s Hospital Immunology Department (Department of Health, Western Australia), formerly Princess Margaret Hospital.

The content has been peer reviewed by ASCIA members and is based on expert opinion and the available published literature at the time of review. Information contained in this document is not intended to replace medical advice and any questions regarding a medical diagnosis or treatment should be directed to a medical practitioner. Development of this document is not influenced by commercial organisations.

Hereditary Angioedema (HAE) FAQ

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Q 1: What is Hereditary angioedema?

Hereditary angioedema, also called HAE, is a very rare and potentially life-threatening genetic disorder that occurs in around one in 50,000 people.

People with HAE have unpredictable, recurrent and rapid swellings (HAE attacks) throughout life, that interfere with daily life and can be potentially life threatening.

‘Hereditary’ means that this condition runs in families because it is a genetic disorder. If one parent has HAE, their children have a 50% possibility of inheriting this disease.

However, less commonly, there may be no family history of the condition, as HAE may occur “spontaneously”. Around 20% of cases result from people who have a spontaneous mutation of the particular gene at conception. Subsequently, these people can pass the defective gene to their children.

‘Angioedema’ is a term used to describe swelling of the tissues. There are many other causes of this type of swelling, the most common being allergic causes.

HAE has been classified as a primary immunodeficiency (PID), also known as inborn errors of immunity (IEI). However, unlike other PID/IEI, people with HAE do not have an increased risk of infections.

Q 2: What are the symptoms of HAE?

Symptoms of HAE include episodes of angioedema (swelling) in various body parts including the hands, feet, face and airway:

  • These episodes can last for days causing great discomfort and interfering with daily life.
  • People with HAE can also often have bouts of excruciating abdominal pain, nausea and vomiting that is caused by swelling in the gut wall.
  • Airway swelling is particularly dangerous and can lead to death by closing over the airway.
  • There is an increased frequency of attacks during puberty or adolescence.

The time when swellings begin in people with HAE varies considerably. In one study, half of the patients reported onset of symptoms by seven years and over two-thirds became symptomatic by thirteen years.

If you are diagnosed with HAE, remember to have other family members tested, as HAE runs in families.

Q 3: What causes HAE?

People with HAE have a defect in the gene that controls a blood protein called C1-Inhibitor:

  • The role of C1-Inhibitor protein helps to regulate the complex biochemical interactions of blood systems involved in immunity, inflammation and blood clotting.
  • The genetic defect in people with HAE results in production of either an abnormal or non-functioning C1-Inhibitor protein.
  • Abnormal or absent C1-Inhibitor protein does not perform its important regulatory function, which causes a biochemical imbalance. This produces other chemicals that can cause tiny blood vessels to leak fluid into surrounding tissue, causing swelling or oedema.

Q 4: How is HAE diagnosed?

Diagnosis of HAE is usually considered due to typical swellings or a family history suggestive of the condition:

There are three blood tests that are used to confirm HAE - a screening test called C4 and specific tests of the level and function of the C1-inhibitor protein.

There are three recognised forms of HAE:

  • HAE Type I is the most common form which affects around 85% of people with HAE - blood tests show low quantitative levels of C1-inhibitor protein.
  • HAE Type II affects the other 15% of people with HAE who have normal or elevated levels of C1-inhibitor protein, but the protein does not function properly.
  • HAE Type III is an extremely rare form of HAE where the levels of C1-inhibitor protein are normal – there are different genetic defects causing this form.

Q 5: How is HAE treated?

At the present time HAE cannot be cured, although scientists are working on gene therapy which will result in exciting possibilities for the future.

Currently there are modern treatments available that can be used to:

  • Treat an acute HAE attack, to reduce severity and duration of the attack.
  • Prevent HAE attacks in the first place.

Some dental and surgical procedures can be dangerous for people with HAE, so it is important that protective treatment is used beforehand to limit the risk of HAE attacks.

The various treatment options should be discussed with your clinical immunology/allergy specialist to enable you to have the most appropriate treatment for your circumstances.

It is important to note that acute HAE attacks do not respond to antihistamines, corticosteroids or adrenaline.

Q 6: Where can support and further information be obtained?

For more detailed information on HAE and for patient or carer support, visit the HAE Australasia website: www.haeaustralasia.org.au

© ASCIA 2021

ASCIA is the peak professional body of clinical immunology/allergy specialists in Australia and New Zealand.

ASCIA resources are based on published literature and expert review, however, they are not intended to replace medical advice. The content of ASCIA resources is not influenced by any commercial organisations.

For more information go to www.allergy.org.au

To donate to immunology research go to www.allergyimmunology.org.au

Content created October 2021

COVID-19 and Immunodeficiency Frequently Asked Questions (FAQ)

This information has been developed in response to the COVID-19 pandemic, for people with primary or secondary immunodeficiencies. 

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Q 1: What is COVID-19 and how does it spread?

Coronaviruses are a large family of viruses that cause respiratory infections, including the common cold and more severe diseases such as Middle East Respiratory Syndrome (MERS) and Seve

Infection with SARS-CoV-2 coronavirus causes COVID-19 (coronavirus disease), and symptoms include cough, fever and shortness of breath. This virus and disease were unknown before the outbreak began in December 2019.

Studies to date suggest that COVID-19 is mainly spread through contact with respiratory droplets and aerosols containing the SARS-CoV-2 coronavirus.

COVID-19 can spread when people:

  • Inhale droplets or aerosols containing the virus, that are shed by a person with COVID-19.
  • Touch a person or surface that is contaminated with droplets containing the virus.

Q 2: Why is COVID-19 vaccination important?

Vaccination is an important way to reduce the risk of developing infectious diseases which can easily spread. This includes COVID-19, which is caused by infection with the SARS-CoV-2 coronavirus.

Immunity occurs after the vaccine stimulates a person’s immune system to make antibodies (immunoglobulins) and COVID-19 specific T cells, to help protect the body from future infections. This means that if a person is vaccinated, they will be less likely to get COVID-19. Even if a person does get infected, it is likely to be a milder illness.

Public health measures and restrictions that have been implemented by the Australian and New Zealand governments since March 2020 have suppressed the spread of COVID-19 in our countries. 

However, the COVID-19 pandemic is a major cause of illness and deaths worldwide, and local outbreaks continue to occur.

This means that vaccination programs are required throughout the world, including Australia and New Zealand

More information is available on the ASCIA website www.allergy.org.au/patients/ascia-covid-19-vaccination-faq

Q 3: Are COVID-19 vaccines safe for people with immunodeficiencies?

Yes. COVID-19 vaccines that are approved for use in Australia and New Zealand are safe for people with primary or secondary immunodeficiencies.

People with certain pre-existing medical conditions have been identified as priority groups for COVID-19 vaccines. This includes people with immunodeficiencies, who are immunocompromised and are therefore at greater risk of any infections.

People with immunodeficiencies should follow the usual advice from their clinical immunology/allergy specialist regarding vaccinations or ask for specific advice regarding the COVID-19 vaccine.

Q 4: Is a third COVID-19 vaccine booster dose recommended for people with immunodeficiencies?

In Australia a third COVID-19 vaccine ‘booster’ dose has been recommended for people who are severely immunocompromised by the Australian Technical Advisory Group on Immunisation (ATAGI).

The ATAGI recommendations have been prepared in consultation with ASCIA, and are available at:

https://www.health.gov.au/news/atagi-statement-on-the-use-of-a-3rd-primary-dose-of-covid-19-vaccine-in-individuals-who-are-severely-immunocompromised

The ATAGI recommendations state that a third primary dose is recommended for people with primary immunodeficiency (PID):

  • Combined immunodeficiency and syndromes.
  • Major antibody deficiency (including common variable immune deficiency [CVID], agammaglobulinemia).
  • Defects of innate immunity (including phagocytic cells).
  • Defects of immune regulation.
  • Complement deficiencies.
  • Phenocopies of primary immunodeficiencies.

The recommended interval for the third dose is two to six months after the second dose of vaccine. People with  PID who had a second dose more than six months ago should receive a third dose whenever this is feasible.

ATAGI also recommends a third COVID-19 vaccine dose for recipients of haematopoietic stem cell transplant (HSCT) or chimeric antigen receptor T-cell (CAR-T) therapy (within 2 years of transplantation), people on some Immunosuppressive therapies and some people with advanced or untreated HIV.

Q 5: Do immunodeficiency treatments need to be stopped to have a COVID-19 vaccine?

It is important that regular treatments for immunodeficiencies are continued, because stopping these treatments can place people with these conditions at greater risk from COVID-19.

Vaccination should occur on a different day (if possible) from regular infusion treatments, such as immunoglobulin (Ig) or immunosuppressant infusions.

For example, people on monthly intravenous immunoglobulin (IVIg) may be advised by their specialist to be vaccinated two weeks after an IVIg infusion.

This avoids confusion about the cause of side effects or allergic reactions, if they occur in response to the COVID-19 vaccine or the infusion treatment.

People on regular treatments should talk to their specialist about the best time to have a COVID-19 vaccine.

Q 6: What precautions should people with immunodeficiencies take?

Most people with immunodeficiencies are considered to be at greater risk of any infections. Precautions they take to prevent infections are consistent with the actions listed below, and they should follow the usual advice from their physician.

People with severe immunodeficiency, including those undergoing bone marrow transplant (haematopoietic stem cell transplant [HSCT]) are at high risk from all infections. They will already be aware of the need to avoid infections, (including actions listed below) and what to do if they are unwell or come in contact with any infectious disease.

People with immunodeficiencies who receive monthly immunoglobulin replacement therapy infusions in hospitals still need to receive their treatment. Hospital infection control policies are in place with extra precautions to isolate patients with, or at risk of getting COVID-19. If infection of COVID-19 is suspected at the time of infusion, promptly contact the treating team for advice.

Q 7: What actions can reduce the spread of COVID-19 and other infections?

If you follow the actions listed below this will help reduce the spread of COVID-19 and other infections.

get vaccinated Get vaccinated
Vaccination reduces the risk of developing COVID-19 and the spread of COVID-19. 
wash hands regularly Wash hands regularly
It is important to wash hands regularly to reduce the spread of COVID-19 and other infections, even if you are vaccinated. 
cover mouth
socially distance
Cover your mouth when you cough or sneeze and practice physical distancing
Cover your mouth when you cough or sneeze and keep a physical distance from other people, to reduce the risk of inhaling droplets or aerosols that contain virus. 
stay home if unwell
wear a mask
Stay home if you are unwell and follow regulations
People who are unwell should stay home, avoid contact with other people and follow local health regulations. 
be aware of symptoms Be aware of COVID-19 symptoms
If you have COVID-19 symptoms or have had contact with a person who has COVID-19, get tested and follow local health regulations. 
seek medical advice Seek  medical help
If you have a positive COVID-19 test result, seek medical help and follow local health regulations.

© ASCIA 2021

Content updated October 2021

For more information go to www.allergy.org.au

To donate to immunology research go to www.allergyimmunology.org.au

ASCIA is the peak professional body of clinical immunology/allergy specialists in Australia and New Zealand.

ASCIA resources are based on published literature and expert review, however, they are not intended to replace medical advice. The content of ASCIA resources is not influenced by any commercial organisations.

COVID-19, Immunodeficiency and School Attendance

July 2020

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 largely been successful in suppressing the spread of SARS-CoV-2, the coronavirus that causes COVID-19, however, outbreaks continue to occur. In regions where there are outbreaks, some students may be required to temporarily return to remote learning.

pdfASCIA PCC COVID-19 Immunodeficiency School Attendance 2020 July Update177.45 KB

For parents of more vulnerable children, including those with PID, the decision to send their children back to school during or after an outbreak 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.

Schools in Australia and New Zealand should have measures in place to reduce the spread of COVID-19 (and other respiratory infections), so we recommend that many children with PID can return to school, in regions where there are no outbreaks.

This advice is based upon the following facts:

  • Children are far less likely than adults to contract SARS-CoV-2 infection and the risk of severe COVID-19 is very low.
  • Evidence suggests that most immunosuppressed children are not at a significantly higher risk of severe COVID-19 than their age matched peers.
  • Very low rates of community transmission mean that the risk of contracting SARS-CoV-2 infection is currently very low. The improved availability of testing and contact tracing mean that we are well placed to isolate and contain outbreaks as they occur.
  • There is good evidence that children don’t spread SARS-CoV-2 like adults. Child-to-child transmission is rare and it is very unusual for asymptomatic children to spread COVID-19.
  • The low risk of contracting SARS-CoV-2 is likely to persist for many months or even longer, depending upon if, and when a vaccine becomes available. It is not in children’s best interests to exclude them from school indefinitely when the evidence suggests that the risk of developing severe COVID-19 is very low.

We understand there will be questions about this advice and will attempt to answer some questions here.

What evidence suggests that children with PID don’t have an increased risk of severe COVID-19?

ASCIA has been following reports and liaising with colleagues from countries that have been much more severely affected by the pandemic than Australia or New Zealand. An international survey is underway to document how many patients with PID have COVID-19. As of early May 2020, only a small number of patients with known PID have been diagnosed with COVID-19 and there is currently no evidence that children with PID are at increased risk of severe COVID-19.

What is the evidence that transmission of COVID-19 in schools is rare?

There have been a number of studies which have shown that the risk of transmissions in schools is low:

  • The NSW government has released a report regarding their investigation of 15 schools where cases were identified in March 2020. There were only two cases of probable secondary infection among 735 students who were close contacts of known cases (0.2%).
  • A population-based study in Iceland did not detect any cases of asymptomatic infection in children under 10 years of age.
  • International studies have consistently found that it is quite rare for children to infect other children or adults.

What is the Government advice regarding children with complex medical conditions?

  • Australian and New Zealand Governments provide official and up-to-date online advice for people at higher risk of COVID-19.
  • Advice from the Australian Health Protection Principal Committee (AHPPC) on reducing the potential risk of COVID-19 transmission in schools is available here.
  • Guidance from the New Zealand Ministry of Health on assessing for COVID-19 in schools is available here

Are there any groups of patients who should not return to school?

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. Advice may differ depending upon the child’s circumstances, infection transmission rates in their community and possibly the state or country they live in.

Is the risk different for primary or secondary school aged children?

There is a slight increase in risk of contracting COVID-19 in secondary school aged children, compared to primary school aged children, and the risk of transmission at school appears to be slightly higher in older teenagers. However, this slight increase in risk is not sufficient to make different recommendations regarding returning to school for these two groups.

Do children have to practice physical/social distancing at school?

Returning to school does not mean that everything will return to normal. There will be an increased focus on handwashing, other hygiene measures and physical/social distancing measures, where practical  

We understand that physical/social distancing is not practical for younger children, and in regions where there is low community spread it does not appear to be necessary, due to low risk of transmission in this age group.

Older students are generally more capable of complying with physical/social distancing recommendations and have a slightly higher risk of contracting the virus from other students. Therefore, older children should make every effort to follow recommendations regarding regular handwashing and physical/social distancing.

The greatest risk for school outbreaks remains adults. Therefore, it is very important that parents comply with restrictions to minimise contact they have with other parents, teachers and students in the school environment

Should children wear masks at school?

The role of masks has attracted a lot of attention in the media. The use of masks has mostly been recommended in countries and regions where there is widespread community transmission, to reduce spread of the virus.

It is understood that the potential benefit of widespread use of masks is to reduce the risk of asymptomatic adults spreading the virus, rather than protecting someone from contracting the virus. Therefore, wearing a mask at school is unlikely to provide any additional protection for your child.

However, in regions where there are outbreaks, the wearing of masks is recommended when physical/social distancing is not possible. 

Further information

This information has been adapted with permission from the Australian & New Zealand Children’s Haematology/Oncology Group (ANZCHOG) oncology and bone marrow transplant (BMT) advice.

The ASCIA COVID-19 webpage www.allergy.org.au/members/covid-19 is regularly reviewed and updated.

© ASCIA 2020

ASCIA is the peak professional body of clinical immunology/allergy specialists in Australia and New Zealand.

ASCIA resources are based on published literature and expert review, however, they are not intended to replace medical advice. The content of ASCIA resources is not influenced by any commercial organisations.

For more information go to www.allergy.org.au

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