Members of the CRN’s Medical Advisory Board and Scientific Advisory Board weighed in on their thoughts regarding the COVID-19 vaccination and if people living with cystinosis should consider receiving it. Below you will find a collective statement from the group. It is important to note: this information is general in nature in regards to the cystinosis community. If you have questions, it is best to consult your physician(s).
We believe that patients with cystinosis may be at increased risk of becoming sick from the coronavirus (COVID 19) if they become infected. This is probably more likely if the patient has other risk factors (e.g., higher risk if diabetes, lung disease, high blood pressure, kidney transplant). Hence, social distancing and vaccination are more important for cystinosis patients than for healthy people the same age.
We currently believe that cystinosis patients should be vaccinated. Some may be in a priority group due to other health problems. Priority groups will receive the vaccine earlier than healthy people the same age. There is no reason to expect that patients with cystinosis would be at increased risk for side effects from the vaccine. All cystinosis patients may be vaccinated. This includes patients with a kidney transplant or receiving dialysis. We do not know if the vaccine will work as well in transplant and dialysis patients. But patients with cystinosis, including those with a transplant or receiving dialysis, should still receive the vaccine.