The novel coronavirus pathogen known as “SARS-CoV-2” and the disease it causes, COVID-19 has infected enough people in enough countries to be declared by the World Health Organization (WHO), a global pandemic.
Since most of us reading this have lived for quite a while with the implications and habits of the immunocompromised, either for ourselves and/or our loved ones – washing our hands frequently and correctly, not touching elevator buttons directly, employing some measure of social distancing, and keeping appropriately-sized stashes of bleach wipes, hand sanitizer, and toilet paper. GLI staff has spent the last several days curating the medical literature, credible updates, and reaching out to leading hepatologists and health care system leaders to identify additional useful and actionable information for us.
If you are someone who has an active liver condition, such as PSC or NASH, are waiting for a liver transplant, are immunosuppressed post-transplant, or undergoing treatment for liver cancer – this information has been put together for you. Although we are drawing from the best clinical and medical society recommendations at the time of this writing, it is not a substitute for health practitioner advice. Since the situation is rapidly evolving check back regularly on our website www.globalliver.org/covid19 or send us a question at firstname.lastname@example.org. We will also have information we hope is helpful from economic and scientific charts and links, to inspirational thoughts during these stressful times on our Facebook, Twitter, and Instagram.
Please join us on Wednesday, March 18 at noon EDT for a Facebook Live event where I will be taking questions for liver patients, caregivers, and other community members.
GLI team members are working remotely from around the world, including our European headquarters in Italy, to support you as liver patients and the field of liver healthcare professionals, researchers, and frontline clinicians. We are grateful for everyone’s contribution to keeping us all safe and ending this pandemic with lives saved, effective treatments, and vaccines developed, and a new commitment for the permanent investment in our public health infrastructure.
As the transplant patient in chief, here’s what I am doing:
- Cancelled all travel a week ago and for the next 8 weeks
- Working from home and having all staff work remotely
- Washing my hands often for 20 seconds and avoiding touching my face
- Hugs and Handshakes are no more
- Having 30 days + of medications and 2 weeks’ worth of food, more in non-perishables
- Deliveries are being dropped off at the door and the items are wiped off with Clorox wipes (the cardboard itself is less of a threat) and washing my hands afterwards
- Minimizing deliveries and cooking my own food (both to limit risk but also to not stress delivery capacity)
- Allowing in only necessary visitors who are required to wash hands and remove shoes immediately upon entry. I assume everyone at this point may be infected.
- No gym, no yoga studio, no nail salon, no hair salon (thanks Peloton, sorry Drybar)
- If I did go out I would drive rather than take shared ride or public transportation (I know that is not an option for everyone)
- Keeping necessary doctor’s appointments (even immunosuppressing biologic infusions for my IBD)
- Checking with specialist offices to see if “elective”, e.g. non-coronavirus–related appointments and procedures cancelled or rescheduled
- I do not wear a mask, since I have no symptoms. I do have gloves, and if I were to go out (e.g. go get gas), I would keep 6 feet apart from anyone.
- Having thermometer, pulse oximeter, blood pressure cuff, oral rehydration solution in case one of us has symptoms and we need to treat at home for a while.
Questions and Answers About COVID-19
What are symptoms of COVID-19 infection?
- Fever (above 99.6)
- Sore throat are most common
- GI symptoms like diarrhea occur in about 10% of cases (5-50% reported)
- Abnormal liver enzymes are observed in 20-30% of infected persons
What are the risks to liver patients?
- This is a new virus, so no one has immunity through prior exposure
- The majority of cases are in adults and have been mild
- There are examples, including of people over 80 and with transplant who have recovered
- At this point in most countries we can assume community spread; that means it is wise to treat any person as a potential carrier. We know that asymptomatic spread can occur during the incubation period with viral shedding when symptoms begin
- Coronavirus is mostly understood to be spread by droplets (i.e. sneeze or cough which spread about 6 feet)
- May be aerosolized
- Fecal-oral transmission is possible
- As people with suppressed immune systems due to medication, age, or as a component of our illnesses, we may be at elevated risk of both contracting the infection and having a more severe reaction. Some early reports from Italy, indicate however, that our weaker immune response may lead to lower reaction and less lung damage
- Also concurrent conditions such as diabetes (high HbA1C), obesity, heart disease, kidney disease and anemia may increase susceptibility
When and where can I get tested?
- If you do not have symptoms you should not be tested, unless you know you have risk from recent travel to an endemic country or exposure to a traveler or infected person
- If you begin to have symptoms do not go to the ER. Call your doctor or see if your insurance plan supports a telehealth visit
- You doctor is likely to have you self-quarantine at home and monitor symptoms
- Testing will likely become more available over the course of the next 2 weeks
- Likely from a Quest or LabCorp facility
- Likely from drive up testing sites in big box parking spots
- Google or sister company Verily may have a pilot website outside of the Bay area to identify testing sites
- Based on recent legislation and payer commitments, co-pays or other costs for tests should be covered. (No provisions for treatment have been made as of this writing)
- We are still waiting for clarification that will be universal prioritization of immunosuppressed people in these community testing initiatives in addition to those over 65
Will there be special hospital beds or ICU space available for the immunosuppressed?
- Many transplant centers and GI clinics are adapting protocols and provisions for liver patients and transplant/candidates and recipients including
- Mobile COVID-19 swab (testing) teams
- Isolation rooms
- Separate entrances
- If you are infected, you will like have both your respiratory function regularly assessed, but also your liver enzymes since the impact of the infection on the liver is still being determined
Are there treatments?
- There are no current specific COVID-19 treatments approved. Scientific protocols from successfully treating patients with repurposed anti-virals and other medications in China and other countries are being shared rapidly in pre-publication journal articles and clinical teleconferences
Is there a vaccine?
- No there is not a vaccine, but there are ongoing efforts to develop and test a vaccine. This is likely to take 12-18 months to provide something proven safe and effective, tested in humans, and manufactured at scale. The response in people with immunosuppression will need to be explored additionally
If you have upcoming medical appointments and procedures:
- All but necessary appointments and procedures will be handled to keep exposure low and create space for the infected
If you are waiting on the transplant list:
- Follow the above and stay in close contact with your transplant center
- Given current and likely travel restrictions move close to your center if you can
- Confirm the health of your family/support network where you are expecting to rehab
- Potential donors should be tested for COVID-19; positive donors will not be allowed to donate
If you are participating in a clinical trial:
- Call the study site before a visit if you are experiencing symptoms or have travelled recently
- Be on the alert for changes to the visit schedule (which are probably being discussed right now with an IRB, the sponsor, and the FDA)
- Some visits may be changed to telehealth visits if they can be and are approved
If you have a family member who is experiencing symptoms:
- Ask them to contact their primary care doctor
- Have them wear a mask if one is available
- Ask them to restrict themselves to one room/one bathroom in the house
- Wash any touched shared surfaces with soap and water (the virus has a lipid barrier so soap is very effective) or disinfectant
- Wash any clothing (those coughed-in sleeves!) in normal detergent and hot water
- If they are admitted to the hospital, anticipate restricted visitation
If you cannot self-isolate at home:
- God bless you if you are a healthcare worker, a day-care provider, first responder, delivery person, at the front lines at supermarkets, or some other circumstance that does not allow you to stay home
- Take every precaution to wash hands repeatedly or use hand sanitizer with an alcohol percentage over 65% and make others around you do so. Keep 3-6 feet apart from others if you can
- Urge your workplace to adopt the social distancing and group size provisions in your area
- Rest, eat well, and take your meds to stay as strong and healthy as possible.
- Please do not work if you are experiencing symptoms
- Provisions are being made to provide paid sick leave or supplemental income replacement for those who need it, so do not put off self-quarantine for income insecurity issues. Let’s get you help.
Keep calm, Stay well, Be Connected
Donna R. Cryer
Founder & CEO
Liver Transplant 1994 Johns Hopkins
(March 16, 2020)
Thank you to the AASLD, ACG, AGA, and ASGE for their March 15, 2020 joint statement of clinical insights for our community of gastroenterologists and gastroenterology care
Global Liver Institute is solely responsible for the content of this document. We thank the following professionals who provided GLI with information and suggestions:
Nancy Reau, MD, Arun Sanyal, MD, Stephen Harrison, MD, Nadege Gunn, MD, Rohit Loomba, MD, Robert Gish, MD.
For additional information visit:
ASTS (American Society of Transplant Surgeons)
UNOS (United Network for Organ Sharing)
AOPO (American Association of Organ Procurement Organizations)
AST (American Society of Transplantation)
CDC (Centers for Disease Control and Prevention)
ECDC (European Centre for Disease Prevention and Control)
WHO (World Health Organization)