Given all the chatter about COVID-19 this upcoming fall season, I thought it best to inform ourselves as patients as to what to expect. Because rates of COVID infection are so variable across the U.S., I spoke to several leading gastroenterologists around the country to get their take on what they’re recommending to their IBD patients about vaccinations, medications, surgery in addition to attending social gatherings and returning to school and/or work.
The 5 IBD specialists I spoke to are located in various parts of the country and include Dr. Jordan Axelrad (Adult GI at NYU Langone Medical Center), Dr. Sabina Ali (Pediatric GI at UCSF Benioff Children’s Hospital), Dr. Jami Kinnucan (Adult GI at University of Michigan), Dr. Tauseef Ali (Adult GI at SSM Health St. Anthony Hospital in Oklahoma City) and Dr. Christina Ha (Adult GI at Cedars-Sinai Medical Center in Los Angeles).
Vaccinations
NYU Grossman School of Medicine
The first topic that came up in discussion was what to expect with vaccinations. Of course, there is no vaccine yet for SARS-CoV-2, or the Coronavirus, so what can we as IBD patients do to protect ourselves especially with the fall and winter seasons upon us? According to Dr. Axelrad, “Patients with IBD are at increased risk for developing vaccine-preventable illnesses such as influenza, pneumococcal pneumonia and the hepatitis B virus. This risk is further increased by immunosuppressive medications used to treat IBD.”
So how can we protect ourselves from these illnesses in the presence of COVID-19? Dr. Tauseef Ali states, “I am asking all my patients to get the flu vaccine annually. This is even more important now during the pandemic to prevent the flu as symptoms can be similar to COVID, raising unnecessary anxiety and panic if one gets flu-like symptoms.” He goes on to share that, “We don’t know of co-infection [of COVID-19 and influenza] yet but it may be possible and it would lead to more dangerous and complex patient outcomes.”
The way I look at it from speaking to these doctors, it sounds like if there is one thing we can avoid this fall, it should be the flu, so best to get vaccinated and keep ourselves safe.
So now what about preventing pneumonia? In speaking to Dr. Kinnucan, she advised that, “all adult IBD patients on biologics, immunomodulators and/or small molecules should receive both pneumococcal vaccinations: Prevnar and Pneumovax (given 8 weeks apart).” None of these are live vaccines so they should be safe to receive.
Pediatric Gastroenterologist,
UCSF Benioff Children’s Hospital
From a pediatric angle, Dr. Sabina Ali opined that, “all children and adolescents with IBD should follow the same guidelines as adults with regard to getting the flu vaccine. They should also receive both pneumococcal vaccinations if taking immune-modifying therapies.” She shared an important resource with a schedule for how to receive the pneumococcal conjugate vaccine: https://www.immunize.org/catg.d/p2016.pdf.
As for the SARS-CoV-2 vaccine to protect against Coronavirus, in a Twitter conversation I had with Dr. David Rubin (renowned Adult GI at the University of Chicago), he did mention that it will not be a live vaccine, so rest assured when the time is right for patients like us to receive the vaccine, we will be able to do so. The bigger concern though as expressed by Dr. Kinnucan is that, “the efficacy and safety of this vaccine for patients on immune-modifying therapies will not be known initially.”
So my take on this is when my gastroenterologist believes the time is right for me and when there is sufficient safety and efficacy data for my doctors to feel comfortable with me taking the COVID vaccine, I will.
Telehealth
As we charge right into the fall season, most of these doctors are continuing to offer telehealth to patients who feel more comfortable not coming in. However, there are limitations to telehealth as noted by Dr. Ha: “There are certain scenarios where an in-person visit is preferred, particularly if a physical exam needs to be performed or if there is concern that the patient may need to be admitted to the hospital.” Dr. Kinnucan goes on to describe which scenarios she would prefer to have a patient come into the office: “new abdominal pain, new perianal drainage/pain and/or new extraintestinal manifestation(s).” Both these doctors agree that it might be best to address virtually first and then decide if the patient should come in to be examined further or hospitalized.
With regard to telehealth though, there may sometimes be insurance coverage issues as well. Dr. Tauseef Ali shares that, “telehealth is very limited due to insurance policies and reimbursement is still a very challenging issue that has not been completely addressed.” So many of his patients come in to be examined and only patients from far-off locations might choose to do telehealth over traveling into Oklahoma City, a location that was hit hard by the virus this past summer.
Medications
Regarding medications, Dr. Axelrad and his institution have launched several studies out of New York City to understand which medications might pose the greatest risks if COVID-19 is contracted in an IBD patient. He stated, “Based on preliminary data with limited follow-up around the world, including several publications from our group at NYU, it appears biologics do not increase the risk of SARS-CoV-2 acquisition or severe outcomes of COVID-19. We do need more follow-up data but these medications are safe to start and continue during the pandemic.”
Gastroenterologist,
Cedars-Sinai Medical Center
To add to Dr. Axelrad’s statements, Dr. Sabina Ali shared that the data on biologics is similar in pediatric GI patients and that steroid use is being curtailed. Dr. Ha also mentioned that protocol is, “to limit or minimize steroid exposure as we should always do since steroids are associated with increased risks of complications of IBD, infections and hospitalizations (to name a few). However, particularly in the setting of the COVID-19 pandemic, steroids are by far the medications associated with the greatest risks of complications from COVID-19. In some cases, such as severe flares, steroids can’t be avoided, but this means that counseling about starting steroid-sparing therapies such as biologics and other immunosuppressants right away is even more important now.” So, if you are being offered steroids for a severe flare, open up the conversation with your doctor to understand what therapies he/she wants you to use long-term so that you can minimize steroid use.
Dr. Ha goes on to provide a valuable resource, “Reassuringly, the number of patients diagnosed with COVID-19 is not higher among IBD patients than the general population. The SECURE-IBD registry has shown us that immunosuppression, particularly if used by itself, is not associated with increased risks of COVID-19 complications.” For your reference, the SECURE-IBD registry is an international, pediatric and adult database to monitor and report on outcomes of COVID-19 occurring in IBD patients: https://covidibd.org/.
Due to these findings, Dr. Ha in addition to the other GIs interviewed are keeping their adult and pediatric patients on their medications during the pandemic: “We definitely are recommending people stay on schedule with their infusions, injections and all other IBD medications – the risks of a flare are far greater and far riskier than risks of COVID-19, especially if having a flare means a likely course of steroids.”
The important takeaway here is to continue to adhere to your usual regimen of IBD medications and if you have concerns, best to discuss with your gastroenterologist.
Surgery
For a while in the spring, it felt like many of us were delaying colonoscopies and/or surgeries until numbers began to flatten. However, even though numbers remain high in some of these locations, GI doctors are generally recommending IBD patients stay on top of their care to ensure prevention of flares or worsening of disease. In many states, elective procedures, including j-pouch surgeries, have resumed. Dr. Axelrad advises, “since we are expecting a bump in COVID infections in fall/winter [in New York], now may be the optimal time to move forward with surgeries and procedures.”
To add to this, Dr. Kinnucan states, “It is up to the surgeon and patient as well as the current location of that patient to make the best decision regarding timing of surgery.” She goes on to say, “We do not recommend, however, that patients delay essential medical care as that could result in worse outcomes.”
Drs. Tauseef Ali and Sabina Ali vouch for those statements as well in both adult and pediatric patients in not delaying care. Dr. Tauseef Ali specifically states, “Uncontrolled inflammation can lead to more symptomatic flares with unnecessary trips to the hospital and healthcare facilities that I would like to avoid [for my patients] if possible.”
So there you have it. While we might be scared of the virus itself, it’s best for us to have open conversations around surgeries and procedures. Our gastroenterologists and surgeons can advise us on what’s best to make sure we don’t flare or that flares we are having right now don’t get out of control and lead to ER visits, where risks of contracting COVID may be higher.
Social Gatherings
Depending on where you are in the country, risks may be different in terms of exposure to the Coronavirus. In places like New York City, where numbers are much flatter now, Dr. Axelrad is permitting his patients to attend small gatherings, especially outdoors with good mask-wearing etiquette. Dr. Kinnucan in Michigan generally says the same and states that, “it is important for patients to follow CDC and state recommendations for gatherings, face coverings and social distancing.”
Drs. Tauseef Ali and Sabina Ali are recommending that many of their patients continue to be very careful and follow all precautions. Dr. Ha in Los Angeles, another hard-hit area in terms of COVID infections, is saying, “We don’t generally recommend complete self-isolation as social interaction/leaving the house periodically to get some air, run errands, resume some sense of daily routine is important for mental wellness. Pure self-isolation is mainly required if you test positive for the virus or are in close contact with someone who has contracted SARS-CoV-2.”
Many of these doctors said the bottom line is small gatherings of 10 or less people may be okay but to maintain that distancing and wear a mask, and preferably gather outside to prevent exposure. Children and adolescents with IBD should be encouraged to do the same.
Returning to Work and/or School
And now the topic that has been on everyone’s minds all summer: what do GI doctors recommend about returning to work and/or school in person? This too appears to vary state-to-state (even town-to-town) as Dr. Axelrad indicates and he also explains that the decision is often based on a patient’s age, severity of disease, comorbidities, among so many other factors.
Dr. Ha provides a great breakdown of how she assesses and advises patients on the matter:
Step 1: Assess risk based on comorbidities, age, disease activity and medication regimen
- Is the patient on corticosteroids?
- Is the patient on combination immunosuppression?
- Is the patient currently having active IBD symptoms?
- Are there other non-IBD related risk factors present?
If yes to any of the above, it’s important to discuss with your employer options for to telework or seek job modifications to account to prevent COVID-19.
Step 2 Assess the workplace environment
- Are measures being taken to decrease contact time with coworkers to < 15 minutes?
- Are social distancing practices (> 6 feet apart) employed to decrease risks of exposure?
- Are screening measures being taken to identify potentially symptomatic patients for self-quarantine?
- Are meetings being transitioned to virtual formats?
- Are masks being required?
- Is there ample access to hand-washing stations and hand sanitizers?
Dr. Ha goes on to explain, “Returning to work or school is ultimately a personal decision based on these questions – we are not recommending that all IBD patients stay home from work or school, even if they are on immunosuppression, as that’s not practical for many especially if they need to earn their paychecks or paid tuition. However, we are recommending that they be very vigilant about taking all the necessary precautions they can to stay safe.”
Drs. Tauseef Ali and Kinnucan are generally advising patients similarly but are encouraging patients to work or study from home if possible. Dr. Kinnucan cites that many providers are generally supportive of this safety measure.
Regarding the pediatric perspective, the World Health Organization (WHO) states that the risk of coronavirus in children and young adults is lower than is currently reported in older adults. The WHO also notes that most children that have contracted coronavirus experienced a mild or moderate case with similar symptoms to the flu.[1]
Dr. Sabina Ali continues to advise caution in pediatric IBD patients, particularly if patients fall under the following parameters:
- Intravenous or oral steroids ≥20mg prednisolone (or >0.5mg/kg) or equivalent per day (only while on this dose).
- Commencement of biologic therapy plus immunomodulatory or systemic steroids within previous six weeks.
- Moderate to severely active disease not controlled by moderate risk treatments who may require an increase in treatment.
Dr. Sabina Ali states that her practice tends to use these guidelines as best practice: https://www.rcpch.ac.uk/resources/covid-19-shielding-guidance-children-young. She also emphasizes the need to, “look at each pediatric patient history and medications along with family resources available to them. It is also important to consider where they are living, e.g., if they are in a hotbed of COVID infections, to help advise whether or not children and adolescents with IBD should return to school in-person.”
To sum up, as we go into Fall 2020 with COVID-19 still very much a lingering issue worldwide, there are many precautions we as patients can take to minimize our risk of contracting the virus. What’s most important in my mind is that we open up the dialogue on these topics of concern with our doctors to understand their views and how they can help us through the pandemic. The bottom line is to keep flares at a minimum while protecting ourselves from the Coronavirus.
I hope the guidance these providers have shared is exactly what we need to educate ourselves and allay our fears. Keep in mind that Drs. Axelrad and Sabina Ali both live with IBD and continue to be healthcare heroes in the midst of this pandemic, initially without data on the risks to their own health and that too in major COVID hotspots, New York and San Francisco. Hats off to them and to all these doctors for being the brave soldiers they have been in this battle against Coronavirus. Please don’t ever forget to thank your doctors, our very own healthcare heroes, for the difference they’re making in our lives every single day!
So, own your Crohn’s, own your chronic illness, and be proactive in your care. Ask your doctors for help and guidance. They often can point us in the right direction to help allay our fears.
[1] 1 World Health Organization: https://www.who.int/docs/default-source/coronaviruse/who-china-joint-mission-on-covid-19-final-report.pdf
Additional Resources For Your Reference:
‘This is the world without one vaccine:’ Addressing vaccine-hesitancy in IBD
Guidance for Adult IBD Patients on COVID-19
Guidance for Pediatric IBD Caregivers and Patients on COVID-19
What You Need to Know About the Upcoming 2020-2021 Flu Season
Tips for Telehealth & Managing Your IBD During the COVID-19 Pandemic
