FREQUENTLY ASKED QUESTIONS (PRIMARY IMMUNE DEFICIENCY AND COVID19)

No.

At this time, the main way of transmission is human-to-human through respiratory droplets from the nose or mouth when an infected person coughs or sneezes and an uninfected person inhales these droplets. We don’t know how far these viruses travel in the droplets but it is recommended to stay at least 6 ft (2 meters) away from sick people who are coughing or sneezing. In addition, droplets from infected people land on objects and surfaces. Virus in these droplets can stay alive for hours and people can get infected if they touch these surfaces and then touch their nose, mouth or eyes.

Please follow these recommendations by the CDC: Wash your hands often with soap and water for at least 20 seconds especially after you have been in a public place, or after blowing your nose, coughing, or sneezing. If soap and water are not available, use a hand sanitizer that contains at least 60% alcohol. Cover all surfaces of your hands and rub them together until they feel dry. Avoid touching your eyes, nose, and mouth with unwashed hands. In addition, we recommend you take every effort to avoid mass gatherings. Always consider alternatives such as virtual meetings, distant learning, working from home, or rescheduling your travels and conferences.

The CDC lists the following groups as high risk: Older adults, and People who have serious chronic medical conditions like:

• Heart disease
• Diabetes
• Lung disease
• Immunecompromise patients (mostly due to medications and illnesses)

Also please visit CDC recommendations for people at risk of serious infection. https://www.cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

There are many clinical trials ongoing but as of now, there is no specific treatment for COVID-19. However, many cases are mild. Fever and body aches can be treated with acetaminophen. Antibiotics will not treat COVID-19 and should not be used without physician’s recommendation.

The following is excerpted from a statement from the major international medical organizations which deal with PIDs (https://ipopi.org/wp-content/uploads/2020/03/COVID19_Joint_IPOPI_ESID_INGID_APSID_LASID_ASID_CIS_ARAPID_SEAPID_Statement—Update1_v2.0_20200311_1300CET-FINAL.pdf )

The situation is changing all the time and we advise you to monitor for the latest advice applicable to your area. The test usually consists in a nasal swab, that is sent to a dedicated microbiology laboratory for detection of this virus (by polymerase chain reaction (PCR) method, within a few hours). However, in light of shortage of manpower and availability of PCR, most national guidelines do not include or manage patients with chronic diseases including PID different compared with other patients. At this stage, it is not recommended to have PID patients with no or very limited symptoms tested. Furthermore, in some cases, a negative PCR does not rule out to be infected (“false negative”). Hence, it is advised to adhere to local and national guidelines for testing. For NJ residents: https://www.nj.gov/health/cd/topics/covid2019_professionals.shtml For NY residents: https://www.health.ny.gov/diseases/communicable/coronavirus/

There is currently no data pointing to whether PIDs are actually 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 patients with PID 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 primary care physician 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 PID patients 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. Immunosuppressive drugs (in particular corticosteroids), might limit signs of infections (fever and other clinical symptoms). It is recommended to contact your PID expert physician in case of unexplained change in clinical status including your well-being. 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.

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 (WHO), Center for Disease Prevention and Control (CDC) and by your national and local public health authorities. Plasma Derived Medicinal Products (PDMPs), including Immunoglobulins (IVIG or SCIG) According to a statement from Plasma Protein Therapeutics Association (PPTA) there is no risk of transmission of COVID-19 into IVIGs. For PID patients who are on immunoglobulin replacement therapy, there is no evidence to date that more frequent dosing of immunoglobulin will offer more protection. Whilst immunoglobulin replacement therapy provides protection against a range of infections, it does not guarantee immunity against coronavirus. For PID patients whose condition does not require to be under regular Ig replacement therapy, there is no need to start Ig since there should be no antibodies targeting COVID-19 is expected to be contained in the existing preparations. There is no recommendation to give immunoglobulins to the general population to protect or treat people against COVID-19. We should stress the fact that only your PID expert would know best what to recommend to you.

Immune Deficiency Foundation recently published a video and helpful links to inform individuals with primary immune deficiencies: https://primaryimmune.org/news/covid-19-video-update-march-10 https://primaryimmune.org/coronavirus