As of 7/20/2020. All information contained is provided with input from physicians on the NGF Medical Advisory Board.
Get the facts about COVID-19, the disease caused by the novel coronavirus, discover how Gaucher diseases impacts your risk, and learn what you can do to protect yourself and others.
Most people experience mild symptoms from COVID-19 and do not require specialized treatment. However, people age 65 or older or who have certain chronic conditions are at an increased risk of developing complications from COVID-19.
So far, there is no evidence that Gaucher disease itself is an independent risk factor for getting COVID-19 or having a bad outcome if infected. To date, very few cases of COVID-19 have been reported among Gaucher patients. The few Gaucher patients that indeed developed more severe COVID-19 symptoms ALL had other co-morbidities known to increase COVID-19 symptom severity, i.e. obesity, hypertension, cardiac conditions, and diabetes mellitus. To date, the globally accessible numbers are considerably less than what was expected.
People with COVID-19, the disease caused by the novel coronavirus, may experience a variety of symptoms, which may range from mild to severe. According to the Centers for Disease Control and Prevention (CDC), potential symptoms of coronavirus infection include:
- Dry cough
- Breathing trouble or shortness of breath
- New loss of smell or taste
- Muscle pain
- Sore throat
- GI symptoms such as diarrhea, abdominal pain and/or nausea
Some symptoms are an emergency
Call 911 if you develop:
- Difficulty breathing
- Persistent chest pain or pressure
- New confusion or inability to become alert
- Trouble waking up or staying awake
- Bluish lips or face
Multisystem Inflammatory Syndrome in Children (MIS-C) Associated with COVID-19
A small number of children in recent weeks have been reported as presenting with a childhood inflammatory disease possibly resulting subsequent to COVID-19 infection.
This inflammatory condition may occur days to weeks after COVID-19 illness. Some children developed severe heart and multiple organ complications necessitating intensive care. Early pediatric recognition and prompt referral to in-patient critical care and other specialists are essential.
We are still learning how the novel coronavirus spreads. According to CDC and the World Health Organization (WHO), COVID-19 spreads primarily through person-to-person contact. When an infected person coughs, sneezes, or talks, they produce respiratory droplets that can spread the virus. The virus may spread via contaminated surfaces, especially if people touch their faces after touching a surface.
The best way to prevent the spread of the virus is to limit contact with infected people. Some people become infected but never show symptoms, so EVERYONE needs to follow these guidelines:
- Wash your hands often with soap and water for at least 20 seconds.
- Use hand sanitizer that contains at least 60% alcohol if soap and water are not available.
- Avoid touching your face.
- Avoid close contact with people who are sick.
- Clean and disinfect frequently touched surfaces.
- Practice social distancing (stay at least 6 feet away from anyone outside your household).
- Wear a mask that covers your mouth and nose if you must leave the house.
If you are sick:
- Stay home.
- Cover your coughs and sneezes with a tissue.
- Inform your doctor, especially if you experience symptoms of COVID-19.
Those at higher risk of severe illness from COVID-19 include people who:
- Are age 65 or older
- Live in a nursing home, group home, or long-term care facility
- Have underlying medical conditions
People of all ages with the following conditions are at higher risk:
- Chronic heart, lung, liver, or kidney disease
- Moderate or severe asthma
- Severe obesity (body mass index greater than 40)
- Due to conditions such as cancer, HIV/AIDS, organ transplant, or autoimmune disease
- From treatments that weaken the immune system, such as chemotherapy, biologics, or prolonged use of corticosteroids
Gaucher conditions that may increase risk of severe infection
Talk to your Gaucher specialist about how to protect yourself if you have any of the following GD-related conditions or other risk factors:
- Lung, kidney, liver, or spleen involvement
- Splenectomy (surgical removal of your spleen)
- Immunodeficiency (weakened immune system)
- Lack of mobility because of severe bone disease
- GD and Parkinson’s disease
It is important to continue managing your condition despite the disruptions caused by the pandemic. Keep in mind that most people infected with coronavirus do survive. Gaucher specialists have not seen any indication that people with Gaucher disease are more susceptible to COVID-19 than anyone else.
Here are some tips for safely maintaining your Gaucher care:
- Discuss your unique situation with your Gaucher specialist! Your specialist can answer your questions and may help set your mind at ease. Your doctors can help make sure you’re getting the care you need.
- Review your medications with your Gaucher specialist and any other doctors who prescribe medications for you. Discuss your medications at every visit and whenever your health or medical conditions change.
- Continue treatment, as recommended by your Gaucher specialist. Staying on treatment is the safest way to control Gaucher disease.
- Use telehealth appointments rather than in-person visits whenever possible.
Enzyme replacement therapy (ERT)
Continuing ERT is safer than stopping it, even during the pandemic. The main risk with ERT is potential exposure to coronavirus when you receive your infusion. You can take steps to minimize your risk of exposure:
- Wear a mask covering your mouth and nose.
- Ensure staff providing infusions wear personal protective equipment (PPE).
- Ask if you qualify for home infusions.
Considerations for substrate reduction therapy (SRT)
Continue taking SRT unless your doctor tells you otherwise. The main risk from SRT is potential interactions with other medications. Tell any medical providers about all medicines you take.
Before prescribing any medications, doctors should consider:
- Eliglustat (Cerdelga®) interacts in various ways with many medications, such as antidepressants and certain pain medications.
- Eliglustat (Cerdelga®) may have adverse interactions with medicines that have been used for treating symptomatic patients with COVID-19. These medicines include hydroxychloroquine and azithromycin. These two medications on their own can cause dangerous heart rhythm problems. Eliglustat can increase that risk.
- If a physician is prescribing hydroxychloroquine, azithromycin, remdesivir, or any other medication, make sure they know you are taking Eliglustat (Cerdelga®). Have them contact your Gaucher specialist to discuss the possibility of taking a break from Eliglustat (Cerdelga®) until you don’t need the other medications.
Any medical professionals providing urgent care for COVID-19 need to know about your underlying conditions. Here are four steps you can take to educate healthcare providers about Gaucher disease:
- Inform any physicians or healthcare providers that you see—whether outpatient, emergency room, or hospital—that you have Gaucher disease.
- Bring basic patient information with you.
- Provide contact information for your Gaucher specialist.
- Insist that any physician who is caring for you and who is not familiar with Gaucher disease call a Gaucher expert to discuss your case.
Medical understanding of SARS-CoV-2, known as COVID-19, is evolving. To maintain your optimal health, keep apprised of both your local as well as the CDC recommendations for Community Mitigation Strategies. Gaucher disease is one of many factors of your unique health. Seek advice from your Gaucher specialist as well as your PCP.
Additional Coronavirus Tips for Gaucher Patients
The NGF requested and received feedback from the Medical Advisory Board regarding the recent press releases concerning the Israel Institute for Biological Research pre-peer reviewed paper on the possible use of analogues of eliglustat (brand name Cerdelga) and venglustat, a 3rd generation substrate inhibitor currently in clinical trials for Gaucher disease types 1 and 3, for either treatment and/or prevention of COVID-19 viral illness.