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Coronavirus: Five Things To Know If You Have Primary Immunodeficiency

Professional associations and advocacy groups dedicated to primary immunodeficiency diseases make a joint, global statement to share the latest about COVID-19.

coronavirus on a blue background

Nine organizations from around the world have issued a detailed statement for patients who have primary immune deficiencies – a community especially concerned about the coronavirus pandemic.

“We hope these evidence-based recommendations from our experts in the PID field will be helpful in providing accurate information to all our stakeholders,” Johan Prevot, Executive Director of the International Patient Organisation for Primary Immunodeficiencies (IPOPI) said in a tweet. IPOPI delivered the statement on behalf of nine entities, including the European Society for Immunodeficiencies (ESID) and the International Nursing Group for Immunodeficiencies (INGID)

The statement takes a comprehensive approach and includes some now-familiar best practices for everyone, such as regular hand washing/hand sanitizing and avoiding large gatherings. But the statement also includes detailed advice for people who live with primary immune deficiencies (PID).

Read the statement in English.

Read the statement in Spanish.

Here are five takeaways from the communication:

  1. While there’s no data yet to suggest PID patients are at higher risk of more severe disease, it is believed that they are. (People who have primary immune deficiency are more vulnerable to infections, in general.) Therefore, patients must be vigilant and take every precaution, especially if they live in areas where there are many cases of COVID-19.
  2. Patients should remain on current therapies/medications unless their doctor who has expertise in primary immunodeficiency disease recommends a change.
  3. Patients should keep handy the details of their primary immunodeficiency disease diagnosis, medical charts, and medications, as well how to reach their PID expert doctor and an emergency contact.
  4. It is not recommended that PID patients without COVID-19 symptoms or limited symptoms get tested for the virus. In most nations, people with chronic illness – including PID – are not being treated or managed differently than the rest of the population. 
  5. Patients who get sick with a suspected infection should quickly call their doctor. If a patient consults a general practitioner, the patient should also ensure that he or she coordinates with their specialist in primary immune deficiency disease.

The statement also reminds patients that the situation remains fluid and that they should be attentive to local public health authorities.

The situation is changing all the time and we advise you to monitor for the latest advice applicable to your area,” the statement says.

Other groups joining the statement included:

  • Asia Pacific Society for Immunodeficiencies (APSID)
  • ARAPID (Arab Society for PID)
  • African Society for Immunodeficiency (ASID)
  • Clinical Immunology Society (CIS)
  • Latin American Society for Immunodeficiencies (LASID)
  • South East Asia Primary Immunodeficiency Network (SEAPID)

IPOPI also has been using its social media accounts to thank “the brave healthcare teams on the front lines” and everyone who is washing their hands and adhering to social distancing.

Primary immunodeficiency patients are amongst the most vulnerable and benefit from these measures,” IPOPI said on its Facebook page.