SCID and COVID-19: Considerations for caretakers and persons with SCID

In this Q&A, Dr. John Routes provides insight about COVID-19 for families affected by severe combined immunodefiency, or SCID.

Dr. Routes received his Fellowship training in Allergy and Clinical Immunology and Infectious Diseases at National Jewish Health and the University of Colorado School of Medicine, where he was a faculty member for over 20 years. In 2006, he became head of the Allergy and Clinical Immunology Division in the Department of Pediatrics at Medical College of Wisconsin (MCW) and established the Primary Immunodeficiency Program at MCW.

In 2008, Dr. Routes was the principal investigator for the first statewide program (in Wisconsin) to screen all newborns for SCID. In 2010, Dr. Routes testified at the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children on Wisconsin’s successful, statewide implementation of newborn screening of infants with SCID, which resulted in the addition of SCID to the panel of newborn screening tests recommended by the United States government.

Dr. Routes was the President of the Clinical Immunology Society (CIS) in 2012 and in 2016 received the CIS Distinguished Service Award.

Terms to know

SARS-coV2 is the name of the virus.

COVID-19 is the name of the infectious disease that SARS-coV2 causes.

Coronaviruses are a family of hundreds of viruses known to infect birds and mammals.

Q. What particular threat does COVID-19 pose to a baby with SCID who hasn’t undergone treatment?

A. Babies with SCID prior to treatment are very susceptible to life-threatening infections of any sort and in particular respiratory tract infections caused by viruses. Although there are no published studies on COVID-19 in a baby with untreated SCID, it is likely that COVID-19 in SCID would be especially dangerous as the baby has no T cells and T cells are thought to be necessary to successfully clear viral infections. 

Q. If I am a parent of a child with SCID who has undergone treatment during the last 18 months, what special precautions beyond the recommended ones should I be taking to keep my child healthy during this time of threat from COVID-19?

A. You should closely follow the current CDC guidelines to prevent the spread of infection with SARS-coV2. This is especially important in patients with impaired immune function. Importantly, the child should remain on his or her prescribed medications and promptly report any change in clinical status to your provider.

Q. How could the time out from treatment affect how a person with SCID copes with COVID-19, should they contract it? Would a person treated in the last two years be more vulnerable than someone treated several years ago?

A. There is no information on this question. On the one hand, children of all ages with COVID-19 appear to have less severe infections. However, until the baby with SCID has responded to treatment with a more normal immune response, it is thought he or she may have an increased risk for poor outcome with COVID-19.

Q. As an adult with SCID, should I be taking any additional precautions?

A. You should closely follow the current CDC or national guidelines to prevent the spread of infection with SARS-coV2 to immunocompromised patients and promptly contact your provider if you experience any signs or symptoms suggestive of COVID-19.

Q. How would infection prior to treatment or side effects from treatment compromise a person’s ability to cope with COVID-19, particularly damage to lungs or other internal organs?

A: There are no publications on COVID-19 infection in babies with SCID. However, we know that T cells are essential to fight viral infections. Babies with SCID have no T cells and, therefore, are highly susceptible to life-threatening viral infections including viruses that infect the respiratory tract. Therefore, we think that COVID-19 in babies with SCID would be life-threatening. We also know that any serious infection prior to treatment (with bone marrow transplantation) in babies with SCID is associated with a poorer outcome. It is not known if side effects from treatment of SCID are worse in a patient with COVID-19.

Q. What are a parent’s and/or patient’s options when it comes to pursuing follow-up appointments? Should they do their best to pursue telehealth? What if bloodwork is required or trips to an Ig center are required?

A. It is important that you discuss if telehealth is an option or if bloodwork is needed with your provider. Your provider can help to minimize risk of infection if bloodwork or a face-to-face appointment is needed. However, it is important that the patient continue to receive his or her medications, including Ig replacement.

For the latest IDF COVID-19 update, click here.