April 06, 2020
Dear Patients and Family Members,

With the emergence of COVID-19 pandemic, our patients and their families are understandably unsettled about its implications for their health and well-being.

We suggest that the patients under our care follow the CDC recommendations given to the highest risk populations such as the elderly and those with other co-morbid conditions, which pose a greater risk of complications. Please check the CDC website for current updates.

cdc.gov/coronavirus/2019-ncov/about/index.html

cdc.gov/coronavirus/2019-ncov/specific-groups/high-risk-complications.html

While it is suggested that COVID-19 may remain asymptomatic in pediatric population, we interpret this observation with extreme caution for the pediatric patients followed at our center, as the disorders we treat affect the immune system (either primary or secondary), and in addition, many of these disorders have lung involvement as well.

We recommend social distancing, but we also would like to emphasize the importance of continuation of your therapy uninterrupted. Please contact the center where you receive your infusion treatments and inquire whether certain policies that may limit personal contact and duration of the time spent (such as private rooms, and availability of checking in and preparation of the medication in advance) are in place. Please note that we DO NOT recommend interrupting or skipping any treatments especially for patients who have an active “Gaucher disease”. If you are skipping treatments for reasons that are not predictable, such as unavailable home nursing services, or delays in drug shipments, kindly contact us so that we can advise a plan to monitor your disease.

The oral medication (Cerdelga®) may interact with many medications, especially with Hydroxychloroquine used as the first line treatment in COVID-19 infections. Cerdelga, Hydoxychloroquine and Azithromycine combination should not be taken together for their potential interactions that may affect the heart rhythm and EKG. Please contact us immediately if you are unsure about your medications.

For the patients who receive their treatments at our center, we will implement a triage system prior to the appointment by confirming that you do not have any symptoms such as chills, sore throat and cough or a history of known exposure to COVID-19. At the day of the appointment in addition, we will check your temperature before you enter the premises at the check-in station. If you have a fever, even low grade (for adults 99 degrees F, and for children 100 F and above), we will not be able to administer your treatment, and will refer you to your health care provider for further diagnosis and management.

If you are uncertain of your disease status, please contact us so that we can offer you guidance. Let us know whether we could be of further help by utilization of remote health and Telemedicine services. You may contact us via email at This email address is being protected from spambots. You need JavaScript enabled to view it. or by phone at +1 703-261-6220.

Respectfully,

Ozlem Goker-Alpan, M.D.

Lysosomal & Rare Disorders Research & Treatment Center (LDRTC) Fairfax, VA