SARS-CoV2 vaccines and other vaccinations for patients with rare liver diseases (available in 12 languages!)

Patients living with rare liver diseases are strongly encouraged to get vaccinated against COVID-19!

This includes patients with decompensated liver disease and any rare liver disease such as PBC, PSC, AIH, vascular liver diseases, patients waiting for liver transplant and patients post-transplant.

The vaccines appear safe. Talk to your healthcare provider if you are worried or unsure.

The Corona pandemic has had an enormous impact on all of us including patients, doctors, other health care staff, as well as society at large. To our relief, most evidence suggests that the risks to patients with rare liver diseases of acquiring the infection, of suffering a severe course of infection, or even of dying from infection, is not particularly high. It is in fact, more like the risk to the general population. Therefore, in the past, ERN RARELIVER has urged patients and doctors not to change how they manage liver disease including immunosuppressive therapy as needed. We would reiterate this statement in view of current knowledge. However, new questions are now arising with regard to the COVID-19 vaccines that have arrived on the market or are soon coming. We wish to be just as clear about our assessment of the vaccines. From our perspective as doctors and as scientists looking after patients with rare liver diseases: We strongly hope you will take your chance to receive the vaccine, as per your local vaccine rollout! Vaccine availability will speed up rapidly in the coming months, and will offer a realistic chance to end the pandemic within this year. Even though the mRNA-technology for developing vaccines is new in human vaccines, there is a lot of background knowledge on this technology, and experience from animal vaccines has shown us that this is an elegant new technology allowing faster development and faster production of vaccines than classical vaccines. The disadvantages of these vaccines are that they need to be applied twice with a three to four week interval, and that transporting them involves special cooling requirements. The side effects of these vaccines are very similar to the transient side effects we see with most other vaccines including influenza, and comprise local reactions such as pain in the upper arm for a couple of days and in some cases, fatigue, headache, a raised body temperature, and rarely even fever can occur, lasting one to three days. Like with all vaccines, a few cases of allergic reactions have been reported, but they have been confined to patients with a strong allergic predisposition – which is something entirely different from an autoimmune disease. Nonetheless, vaccinations should be given under appropriate medical supervision, as per common practice. Unfortunately, the vaccines have not yet been tested in and thus licensed for children. Therefore, vaccination in children should be weighed up carefully with treating paediatricians on the basis of the limited evidence available. In view of the very low risk of COVID-19 infection in children, in many cases vaccination may be safely deferred. What is important to note is that these are not live vaccines, and so they are also safe for immunosuppressed patients. What’s more, there will be other vaccines, and again we are confident that they will be safe and effective when widely approved, such as the viral vector vaccines (e.g. the Oxford vaccine). These are also not live vaccines and can therefore be applied to immunocompromised patients. At the same time, we would like to remind you that vaccines are generally a very powerful tool in preventing severe infections. Therefore, other recommended vaccinations for patients with chronic diseases and/or immunosuppression such as vaccination against influenza, pneumococcal vaccines or shingles vaccines, should be applied during the pandemic just as they should be applied during normal times. Talk to your doctor and protect your health by making use of these important medical advances. Best wishes for a healthy and happy 2021, Ansgar W. Lohse Coordinator ERN RARELIVER Professor of Medicine Chairman of the I. Department of Medicine (Gastroenterology, Hepatology, Infectious Diseases and Tropical Medicine) University Medical Centre Hamburg-Eppendorf, Hamburg, Germany