COVID 19 and PIDs FAQs

Updated 17 March 2020

General prevention measures to avoid infection

  • Wash hands frequently (every hour) with soap and water (20 seconds) or alcohol-based hand rub, especially after direct contact with ill people or their environment
  • Avoid touching eyes, nose and mouth
  • Avoid close contact (1 meter) with people suffering from acute respiratory infections
  • Avoid close contact (1 meter) with anyone who has fever and cough
  • Avoid greeting people by shaking hands or kissing
  • 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 if instructed by their local health care provider

If you feel unwell and experience symptoms such as fever, cough and/or difficulty breathing, seek prompt medical assistance by phone from your health care provider.

PID patients and COVID 19

How high is the risk for PID patients to be infected?

  • Validated data regarding the additional risk for PID patients is not yet available.
  • Any respiratory virus that can be spread from person-to-person may be a risk for PID patients. Therefore, PID patients should be cautious and keep track of developments of COVID-19 in their region.
  • Whilst immunoglobulin (Ig) replacement therapy provides protection against a wide range of infections, it does not guarantee immunity against coronavirus.

Is the course of COVID-19 infection more serious for people with a PID?

  • Validated data regarding COVID-19 infection in PID patients is not yet available.
  • There is therefore currently no data pointing to whether PID patients are at higher risk of more severe disease from the SARS-CoV-2* (as per the WHO, CDCs and PID expert healthcare professionals and NMO representatives along with patients themselves).
  • However, it is believed that PID patients might be at higher risk to catch this infection or experience a more severe course of the disease. Thus, patients with PID need to take extra care to prevent from getting this infection.
  • PID patients should be cautious, follow recommendations, and keep track of developments of COVID-19 in their region.
  • Whilst immunoglobulin (Ig) replacement therapy provides protection against a wide range of infections, it does not guarantee immunity against coronavirus.

* SARS-CoV-2 is the virus that causes the COVID-19 infection.

Does having a compromised immune system mean that a person is more likely to get an infectious disease and do they risk being more severely affected?

  • Validated data regarding additional risks for PID patients regarding the SARS-CoV-2 virus is not yet available.
  • In general terms, for PID patients suffering from lung complications, it is possible that the risk for an infectious disease is higher and that you might be more severely affected if catching the SARS-CoV-2 virus.
  • PID patients with significant respiratory issues (severe asthma, bronchiectasis or chronic respiratory failure) should receive special attention (as for any risk of respiratory infection).
  • Keep in mind that it is always essential to regularly continue to take the treatment for your PID. Plasma Derived Medicinal Products (PDMPs), such as immunoglobulins (IVIG or SCIG) are safe and will protect you from many other infections.

Some PID patients have daily fever without necessarily having caught the virus. How can they avoid being put in quarantine?

  • Ideally these patients would be tested, show negative results, and thus avoid quarantine.

Symptoms

What are the clinical symptoms of a COVID-19 infection?

  • Human coronaviruses commonly cause mild to moderate illness in the general population. So far, the main clinical signs and symptoms reported in this outbreak include fever, tiredness, fatigue, dry cough and running nose.
  • Some patients also experience aches and pains, nasal congestion, sore throat and/or diarrhea. These symptoms are usually mild and begin gradually.
  • Some people become infected but don’t develop any symptoms and don’t feel unwell. Approximately 80% of the affected people recover from the disease without needing special treatment.

Transmission

How does the SARS-CoV-2 spread?

  • The transmission mode of SARS-CoV-2 is similar to the previous coronavirus outbreaks, and seasonal flu, spreading from person to person through:

– Respiratory droplets spreading when coughing or sneezing

– Close personal contact with an infected person (shaking hands or touching)

– Touching contaminated surfaces and then touching eyes, nose or mouth with unwashed hands

Why should people be quarantined when returning from risk areas, if they are not coughing and sneezing?

  • The virus does not only transmit from person to person through respiratory droplets spread for example when coughing or sneezing. As an example, the virus can also transmit if an infected person coughs while covering their mouth with their hand and then touches someone else who in turn touches their eyes, nose or mouth with unwashed hands.
  • There have been some reports of people who have tested positive for SARS-CoV-2 with only minor or no symptoms at all. In these cases, the infected person has still been able to transmit the virus to people who then become symptomatic, with minor or sometimes more concerning symptoms.
  • The fewer people who are exposed to an infected person the better. This is why quarantine for 2 weeks is usually recommended for people infected with SARS-CoV-2.

Is COVID-19 contagious before symptoms begin?

  • The data regarding the contagiosity is still scarce.
  • However, there have been some reports of people who have tested positive for SARS-CoV-2, showing only minor or no symptoms at all. In these cases, the infected person has still been able to transmit the virus to people who then become symptomatic, with minor or sometimes more concerning symptoms.

Prevention

What can people do to protect themselves from SARS-CoV-2?

  • Any respiratory virus that can be spread from person-to-person may be a risk for PID patients. Therefore, PID patients should be cautious and keep track of developments of COVID-19 in their region. Whilst immunoglobulin (Ig) replacement therapy provides protection against a wide range of infections, it does not guarantee immunity against coronavirus. The World Health Organization’s (WHO) and the Centers for Disease Control and Prevention’s (CDC) recommendations to reduce exposure to and transmission of COVID-19 include, but are not limited to, the list below.
  • The MOST IMPORTANT means to prevent infection are:
    – Wash hands frequently (every hour) by using alcohol-based hand rub or soap and water (20 seconds), especially after direct contact with ill people or their environment
    – Avoid touching eyes, nose and mouth
    – Avoid close contact (1 meter) with people suffering from acute respiratory infections
    – Avoid close contact (1 meter) with anyone who has fever and cough
    – Avoid greeting people by shaking hands or kissing
    – 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 if instructed by their local health care provider.
  • If you feel unwell and experience symptoms such as fever, cough and/or difficulty breathing, seek prompt medical assistance from your health care provider.

Are there additional prevention measures for PID patients?

  • There is currently no data pointing to whether PID patients are at higher risk of more severe disease from COVID-19 (as per the WHO, CDCs and PID expert healthcare professionals and NMO representatives along with patients themselves).
  • However, it is believed that PID patients might be at higher risk for this infection or a more severe course of the disease. Thus, patients with PID need to take extra care to prevent from getting this infection.
  • Patients with PID living in areas of high prevalence should take every precaution and adhere to local, regional and national recommendations (staying at home, teleconsultation, work from home, etc..).
  • Beyond the precautions mentioned above, we advise prompt phone contact with a doctor if an infection is suspected (should it be your PID expert, or your GP who should let your PID expert know about your condition in order to provide the best advice for each PID patient’s specific condition).
  • Patients should always keep the details of their PID diagnosis and medical charts, medications, PID expert doctor and next of kin at hand, in case urgent medical care is needed.
  • PID patients with lung and/or heart complications, solid organ transplants’ recipients, recent recipients of hematopoietic stem cell transplantation or gene therapy, PID patients undergoing treatment for a cancer (malignancy), as well as patients under immunosuppressive or immunomodulatory drugs (for autoimmune or inflammatory or autoinflammatory complicating the PID course) should remain on their specific therapy until recommended otherwise by their PID expert physician.
  • PID patients with significant respiratory issues (severe asthma, bronchiectasis or chronic respiratory failure) should receive special attention (as for any risk of respiratory infection).
  • Immunosuppressive drugs (in particular corticosteroids), might limit signs of infections (fever and other clinical symptoms). It is this recommended to contact your PID expert physician in case of unexplained change in clinical status including your well-being.
  • Keep in mind that it is always essential to regularly continue to take the treatment for your PID. Plasma Derived Medicinal Products (PDMPs), such as immunoglobulins (IVIG or SCIG) are safe and will protect you from many other infections.
  • For everyone, including PID patients, we strongly recommend you to keep aware of the latest information on the COVID-19 outbreak in your region, for example provided by the World Health Organization’s (WHO), the European Centre for Disease Prevention and Control (ECDC) and by your national and local public health authorities.

Can antibiotic prophylaxis be useful?

  • Validated data is not yet available.

Can vitamins help increase resistance against SARS-CoV-2?

  • There is no evidence that taking vitamins will protect people from the new coronavirus.

Daily life

Should children with PID stop going to school?

  • Several countries have closed schools to avoid further spread of the virus. Decisions are being made based on the local epidemiological situation and the situation is changing constantly.
  • In countries where schools have not closed, the first recommendation is to monitor the latest advice applicable to your area and to always seek advice from your child’s expert physician in case of doubt.
  • A general recommendation however would be that PID patients continue to go to school, but that the school should ensure that the parents are informed immediately if any of the teachers or classmates present (even mild) symptoms. School attendance will therefore depend on the local epidemiological situation and the underlying PID and needs to be discussed with the PID expert physician.

Access to hospitals/specialists/treatments 

Should patients continue to go to the hospital to receive their immunoglobulin (Ig) treatment?

  • It is very important for PID patients to stay on their Ig treatment, even though it might be administered at the hospital. Generally speaking, it is therefore better to continue receiving the treatment in the hospital rather than to postpone it.
  • Some countries have put in place special measures to enable patients who usually get their treatment in the hospital to instead, temporarily, get it at home.
  • For PID patients who have this possibility; temporary switching to home treatment is advisable to avoid visiting the hospital and potentially getting exposed to the virus. Home treatment can either be administered intravenously (IVIG) or subcutaneously (SCIG) depending on the country.
  • For PID patients who do not have this possibility, clinics should provide a space for PID patients on a dedicated time after the clinic has been closed and properly disinfected. The PID patients should be treated in separate rooms while receiving their treatments.
  • PID patients should follow the local health care professional advice in terms of prevention. If a shortage arises and a PID patient cannot access their treatment, then self-confinement and all other preventive measures should be strictly enforced.

What should patients do if the hospital is overwhelmed or closed?

  • PID patients should follow their local health care professional’s advice.
  • If there is an immunoglobulin shortage and a PID patient cannot access their treatment, then self-confinement and all other preventive measures should be strictly enforced.

In case of infection

If a PID patient is infected with SARS-CoV-2, should the general practitioner or local hospital get in contact with the patient’s immunologist?

  • Yes, if an immunologist is available, they should be contacted.
  • Not only may the immunologist have additional ideas and advice, but without them being informed there will be no possibility to collect new data. Collecting data is vital to improve the situation for the future.
  • IPOPI is currently participating in the launch of a global survey on SARS-CoV-2 and PIDs, working jointly with the International Union of Immunological Societies and other medical societies.
  • Help us by disseminating this survey to your national medical advisers and all national doctors who manage PID patients in your country: https://www.surveymonkey.com/r/67RBPNZ?

If a PID patient with bronchiectasis gets the virus, what is the protocol to follow in a country where knowledge on PIDs is low?

  • The bacteria in the lungs might create a more severe reaction if a PID patient is infected with SARS-CoV-2, therefore additional antibiotics that would normally be prescribed for a person with bronchiectasis might be an option to try for protection quality. It would be advisable to address this already existing bacteria to possibly reduce the severity of the symptoms caused by the COVID-19
  • PID patients should have prompt contact with their local healthcare professional if an infection is suspected and follow their advice (should it be your PID expert, or your GP who should let your PID expert know about your condition in order to provide the best advice for each PID patient’s specific condition).

Prospects for the future

Is there any action taken to improve knowledge on the impact of SARS-CoV-2 for PID patients?

Is there any anti-viral medicine to treat SARS-CoV-2 available?

  • There is currently no anti-viral drug available. There might be some anti-viral drug working in vitro in the laboratory, but it has not yet been tested in humans.
  • However, there are currently several clinical trials about to start or having started already through accelerated processes, all conducted in accordance to the standards regarding clinical research and therefore safe despite being accelerated.
  • There is not yet any vaccine available for SARS-CoV-2.

COVID-19 will most likely become a common disease, what does that mean for PID patients?

  • It’s not the first SARS virus outbreak, there were two before in the previous years, one called SARS-CoV and the other MERS-CoV, and there will likely be other SARS virus outbreaks in the future. It is not yet possible to say if this will be the same kind of viral infection, but we will need to live with this current virus in the next years.
  • It is likely that the vaccine will be available in approximately 18 months from now so the peak epidemic will have passed when the vaccine becomes available. We will probably still need to consider immunizing PID patients against the seasonal flu and against the SARS-CoV-2.

Plasma supply

Will there be shortages of immunoglobulin due to possible decrease in plasma donations?

  • Any decrease in plasma donations linked to SARS-CoV-2 will not have any immediate effect on supply as the manufacturing process of immunoglobulins takes over 6 months.
  • IPOPI is in close contact with several plasma products pharmaceutical companies who have confirmed that they have not seen any drop-off in plasma donation and are therefore currently not anticipating any impact on plasma collection and continuity of planned supply of plasma-derived medicinal products including immunoglobulin therapies. However, decreases in blood donations have been observed and the situation is changing all the time as movement restrictions are being enforced in certain countries/areas. IPOPI continues to monitor the situation very closely and will take action accordingly.
  • Latest updates from the Plasma Protein Therapeutics Association (PPTA) available here.

Translations of the FAQs

French; Spanish