As of 3/2/22. All information contained is provided with input from physicians on the NGF Medical Advisory Board.
Please remember that this website provides only general information about COVID-19. Your Gaucher specialist is the best person to advise you about your health.
Medical understanding of COVID-19 is evolving. To maintain your optimal health, follow your local guidance and CDC COVID-19 recommendations.
COVID-19 and Gaucher
You should continue all treatments and medical management of lysosomal disorders, including Gaucher disease. Before making any changes to your medical regimen, or if you need care for COVID-19-related illness, seek advice from both your Gaucher specialist and your primary care provider (PCP). Learn more about coronavirus and people with Gaucher disease.
COVID-19 Vaccines Available Now
On August 23, 2021, the US Food and Drug Administration (FDA) approved the Pfizer-BioNTech mRNA vaccine, the first COVID-19 vaccine. The vaccine will be marketed as Comirnaty for the prevention of COVID-19 disease in individuals 16 years of age and older. This mRNA vaccine requires two doses, 21 days apart.
This vaccine has an EUA for ages 5 – 15, with children receiving an age appropriate dose.
In addition, the FDA has issued Emergency Use Authorization (EUA) to make two other vaccines available in the United States. These vaccines are:
- Moderna: Another mRNA vaccine, this vaccine requires two doses, 28 days apart. The EUA is for ages 18 and older and for the administration of a third dose in moderately to severely immunocompromised individuals.
- Janssen-Johnson & Johnson: This recombinant adenovirus vaccine requires only one injection. The EUA is for ages 18 and older.
For vaccines that require two doses, it is important to get both doses. Administering the second dose up to 42 days after the initial dose has been shown to be effective.
The administration of a third dose in certain immunocompromised people, and for a single booster dose is recommended:
- For adults who received a mRNA vaccine (Pfizer/BioNTech & Moderna):
- 5 months after the last dose in their primary series, a booster dose of either mRNA vaccine
- For adults who received a J&J:
- At least 2 months after the first dose, a booster dose of either mRNA vaccine
- For teens 12 – 17 who received a mRNA vaccine:
- 5 months after the last dose in their primary series, a booster dose of a Pfizer/BioNTech mRNA vaccine.
Learn more about the CDC booster recommendations and discuss with your physician if you should have a booster.
Who Can Receive a COVID-19 Vaccine?
Answers to Other Questions About COVID-19 Vaccines and Gaucher
As more people become vaccinated and the COVID-19 pandemic continues to evolve, we will update this section. Meanwhile, here is what we know:
What are the benefits of the SARS-CoV-2 vaccine?
The COVID vaccine offers several major benefits. The vaccine:
- Reduces the severity of the disease if contracted.
- Protects others around you by reducing prevalence of the SARS-CoV-2 virus among the general population.
- Real world evidence show the vaccines help protect against COVID-19 infections, with or without symptoms (asymptomatic infections).
Should I get the COVID vaccine if I have Gaucher disease?
Vaccination is an important tool to help society return to normal. Vaccines are effective at preventing COVID-19 infection and preventing serious illness even if you get COVID-19.
All vaccines have gone through a rigorous authorization process. Careful trials of the vaccines indicate that they are safe and effective.
Currently, COVID-19 vaccines have an EUA for people age 12 or older (Pfizer) or 18 and older (Moderna and Johnson & Johnson).
We do not know whether these vaccines will be as effective in GD patients as in everyone else, but there is no evidence to the contrary. To the best of our collective knowledge, there is no reason why patients with Gaucher disease would have additional adverse events from the vaccines. If you already had COVID-19, you can still get the vaccine.
If you already had COVID-19, you can still get the vaccine. Check for the latest recommendations from the CDC and discuss with your physicians.
COVID-19 can be a serious, highly infectious and unpredictable illness. The risks of COVID infection far outweigh the risks associated with the vaccine. The disease is still spreading rapidly through communities in the United States and elsewhere.
What are the vaccine’s side effects for people with Gaucher?
Like most vaccines, the shot can cause mild side effects. These reactions go away after a few days. Vaccine side effects may include:
- Swelling, redness and pain of the injected arm
- Fatigue, sometimes severe
- Muscle and joint pain
Very rarely, predisposed allergic individuals could have an anaphylactic reaction. All individuals receiving vaccines are monitored for at least 15 minutes post-injection to reasonably assure no anaphylaxis.
Additional and serious side effects are extremely rare in our relatively short-term post-vaccination experience.
As recommended for anyone receiving such vaccinations, persons with Gaucher disease who have previously had a major allergic reaction (anaphylaxis) to food, or to Gaucher or other medications should alert the healthcare facility providing the injection and should be closely monitored for at least 30 minutes after their injection.
If you receive enzyme, we suggest that you do not get vaccinated on an infusion day.
Can I still get COVID-19 if I’ve been vaccinated?
Recent studies from Israel suggest that ~2 in 10,000 people who have been vaccinated have had symptomatic COVID-19. In people who have received the vaccine and contracted COVID, the illness remains mild and, except in very rare cases, requires no specialized care.
It is still unknown if and how many individuals can have asymptomatic infection after vaccination and, therefore, transmit the disease to others. It is important to continue to follow CDC mitigation guidelines after vaccination.
We do not yet know how long immunity to COVID-19 disease will last after infection or immunization. We also do not have information about how variable that immunity will be among individuals with or without GD.
How do the COVID vaccines work?
The vaccines teach your body to recognize the COVID-19 virus and mount its own defense to the virus. They work as follows:
- mRNA vaccines: Messenger RNA tells the body to make the spike protein found on the outside of the virus. Then the body’s own cells react to that protein. The vaccine trains your own immune cells to fight back any further infection. The mRNA rapidly deteriorates, and your body disposes it as waste. The mRNA does not enter your cells’ nucleus and cannot change the makeup of your cells.
- Modified adenovirus vaccine: The vaccine uses a deactivated cold virus changed to include the spike protein on the outside of the SARS-CoV-2 virus. The modified virus can’t reproduce in your body. The vaccine travels to your cells, which “read” the protein and start making antibodies to the virus.
Do the vaccines protect against variants of COVID-19?
The SARS-CoV-2 virus, like other viruses, is mutating (changing) as it spreads in the human population worldwide. New variants have emerged from the United Kingdom, South Africa, Brazil, and Finland.
The effectiveness of the current vaccines against these new mutant strains is still unknown. Some variants may have some ability to get around the body’s immune response. We expect that in the future, vaccine manufacturers will work to develop updated versions of the vaccine.
Meanwhile, vaccination is still recommended to provide significant protection against the SARS-CoV-2 virus.
Can the vaccine give me COVID-19?
No. None of the vaccines can cause a COVID-19 infection. The vaccine does not inject the virus into people.
The mRNA vaccines (Pfizer-BioNTech and Moderna) tell the body to make the spike protein found on the outside of the virus. Then the body’s own cells react to that protein. The vaccine trains your own immune cells to fight back any further infection. The mRNA rapidly deteriorates, and your body disposes it as waste. The mRNA does not enter your cells’ nucleus and cannot change the makeup of your cells.
The modified adenovirus vaccine (Johnson & Johnson Janssen) uses a deactivated cold virus changed to include the spike protein on the outside of the SARS-CoV-2 virus. The modified virus can’t reproduce in your body. The vaccine travels to your cells, which “read” the protein and start making antibodies to the virus.
Can my child with Gaucher disease get the vaccine?
Most children can now receive a COVID-19 vaccine. Currently, COVID-19 vaccines have an EUA for people age 5 -17 years (Pfizer) or 18 and older (Moderna and Johnson & Johnson). Clinical trials are underway in younger children, and authorization is likely in the coming months.
There have been reports of myocarditis and pericarditis in adolescents and young adults after COVID-19 vaccination. The CDC is monitoring these reports through VEARS, the Vaccine Adverse Event Reporting System.
Cases reported to VAERS have occurred:
- Mostly in male adolescents and young adults age 16 years or older
- More often after getting the second dose of one of these two COVID-19 vaccines than after the first dose
- Typically within several days after COVID-19 vaccination
- Most patients who received care responded well to medicine and rest and quickly felt better.
We do not know whether these vaccines will be as effective in GD patients as in everyone else, but there is no evidence to the contrary. To the best of our collective knowledge, there is no reason why patients with Gaucher disease would have additional adverse events from the vaccines.
Vaccination is an important tool to help society return to normal. Vaccines are effective at preventing COVID-19 infection and preventing serious illness even if someone gets COVID-19.
COVID-19 can be a serious, highly infectious and unpredictable illness. The risks of COVID infection far outweigh the risks associated with the vaccine. The disease is still spreading, rapidly through some communities in the United States and elsewhere.
More information is available from the CDC regarding COVID-19 vaccines for children and teens.
Should I have priority for vaccination since I have Gaucher disease?
Each state decides how they will distribute the vaccine. The official recommendations state that people over age 65 and those who have underlying health risks should get priority over the general population.
In our view, Gaucher disease is a chronic medical disorder, and thus our patients are considered to have an underlying health problem.
That being said, our collective experience over the past months indicate that patients with Gaucher disease who do not have other serious health issues do not seem to be more susceptible to COVID-19, nor do they appear to have more severe cases just because of Gaucher disease.
What about the possible use of substrate inhibitor analogues to treat COVID-19?
The Israel Institute for Biological Research shared news releases about a pre-peer-reviewed paper on the possible use of Gaucher medications to treat and/or prevent COVID-19 viral illness. The medications are analogues of eliglustat (Cerdelga®) and venglustat, a third-generation substrate inhibitor currently in clinical trials for Gaucher disease types 1 and 3.
The NGF requested and received feedback from the Medical Advisory Board regarding the recent press releases. In essence:
- There is no evidence that existing Gaucher medicines have an effect on COVID-19.
- Gaucher patients should continue their current treatment unless otherwise directed by their Gaucher specialists.
Are there publications regarding attitudes of Gaucher disease experts towards vaccination for patients with GD and the impact of the pandemic on their patients?
On July 5, 2021, the British Journal of Haematology published an article about a cross-sectional study conducted by surveying 19 Gaucher experts from 10 countries who collectively treated 1, 417 Gaucher patients.
The study “revealed overall support of the COVID-19 vaccination…specifically, the mRNA-based vaccines were favored…due to their overall efficacy, tolerance and safety profiles, as appears from clinical trials and world-wide experience.”
To note, the survey for the study was distributed when data was available for only one adeno-associated virus (AAV) vectored vaccine — the Oxford-AstraZeneca vaccine and, some responses were received prior to regulatory authorization. The only AAV vectored vaccine under Emergency Use Authorization (EUA) in the US is the Johnson & Johnson vaccine.
Read the article in its entirety: Experts Views on COVID-19 Vaccination and the Impact of the Pandemic on Patients with Gaucher Disease.
Additional Coronavirus Resources for Gaucher Patients
Gaucher disease is one of many factors that uniquely affect your health. Seek advice from your Gaucher specialist as well as your PCP. Other resources that may interest you include:
- Coronavirus tips for Gaucher patients
- What precautions should people with Gaucher disease take?
- Coronavirus glossary
Thank You to Our Advising Gaucher Specialists
A panel of Gaucher specialists from Gaucher treatment centers addressed the questions above regarding the new COVID-19 vaccines.
Information on this page was contributed by a panel of Gaucher specialists including: Manisha Balwani, MD; Deborah S. Barboth, MD; T. Andrew Burrow, MD; Robin Ely, MD; Edward I. Ginns, MD, PhD; Ozlem Goker-Alpan, MD; Gregory A. Grabowski, MD; Priya S. Kishnani, MD; Heather Lau, MD; Nicola Longo, MD, PhD; Grisel Lopez, MD; Gustavo Maegawa, MD, PhD; Pramod Mistry, MBBS, PhD; Seymour Packman, MD; Barry Rosenbloom, MD; Tamanna Roshan Lal, MB ChB; Raphael Schiffmann, MD; Ellen Sidransky, MD; and Neal Weinreb, MD.