Battling COVID-19 vaccine misinformation: What are you telling your patients?
Weeks ago, American rapper Nicki Minaj sparked an international incident when she tweeted out to her 22.6 million followers that her cousin in Trinidad had refused the COVID-19 vaccine because his friend became impotent after receiving it.
Although her comments triggered widespread backlash, with health experts ranging from the Trinidad and Tobago health minister to Anthony Fauci, MD, rushing to set the record straight, celebrities using their sizable platforms to spread vaccine misinformation continues to be an issue. Rob Schneider, Offset, Samaire Armstrong and Anwar Hadid — not to mention a small army of fringe political commentators — have all exposed their fanbases, to some extent, to anti-vaccine rhetoric.
To discuss how providers can combat such a vast array of misinformation, Healio Rheumatology spoke with Cassandra Calabrese, DO, of the department of rheumatologic and immunologic disease at the Cleveland Clinic, and Kevin L. Winthrop, MD, MPH, of the Oregon Health & Science University.
Healio Rheumatology last spoke with Calabrese and Winthrop in January, when vaccination efforts in the United States were just beginning and the delta variant explosion was still 6 months away. More than 9 months later, 64% of Americans aged 12 years and older have been fully vaccinated, according to recent CDC data. Among the total population, 55% are fully vaccinated.
Other topics discussed include breakthrough cases among the immunocompromised, boosters, drug-specific concerns that have come to light since January, and how delta has impacted their practice.
Q. How has the vaccination effort in the United States progressed? Are we behind where we should be?
Calabrese: I think no one will disagree that we are behind where we need to be, and delta unfortunately changed things a bit. But we are definitely behind — and we are behind other countries. There is a clear correlation with vaccination rate in our country, and states within our country, where those with lower vaccine rates are doing a lot worse in terms of hospitalizations and death from COVID.
We are definitely behind where we need to be and this will not end until enough people are vaccinated to protect people who can’t get vaccinated, like children — which will hopefully be subject to change soon — and help protect people who may not have had as good a response to the vaccine, like our patients. There certainly are too many unvaccinated persons, and too many unvaccinated persons who are out and about without masks and doing all these things that are continuing the spread.
Winthrop: I think we were pretty darn on track. Obviously, things have petered out a little sooner than anyone would have liked. We figured that 20% to 30% of people would not get the vaccine — I think that’s probably about where we are. So, I don’t know if we have reached any different conclusion.
I think we were optimistic or hopeful that we might have a greater buy-in by the overall public, but I think in general we did quite well compared to many other countries in terms of getting up to 60% to 70% vaccine coverage relatively quickly. I thought the rollout starting in the early part of the year went phenomenally well.
Q. Have you personally seen vaccine hesitancy?
Winthrop: Yes, I spent about an hour and a half over the course of three patients the other day, just trying to convince them to get the vaccine. I went three for three — I got all of them to do it, which was great, but it took a long time and a lot of refuting all sorts of bizarre cockamamie information that they are picking up on the internet from dubious sources. It involved a lot of showing them data, either from studies that I had been involved in or knew intimately.
The most effective thing was showing them the hospital data. I think that day we had 29 people in the ICU and all 29 of them were unvaccinated. We had 26 people on a ventilator and all 26 of them were unvaccinated — showing them statistics and figures like that were helpful.
Calabrese: Yes, absolutely every day, unfortunately. In our patients and patients’ family members, we encounter someone every day who is not vaccinated. About half of them, at this point, are people who were given misinformation — sometimes by medical professionals — and who, after having a discussion with them to address their concerns and giving them the correct recommendations, do get vaccinated. The other half are people who just don’t want to hear it and are never going to get vaccinated. And we see those people pretty much every day of the week at the clinic. It’s very disappointing.
Q. What kind of reasons do they give?
Winthrop: One patient’s son was worried that the vaccine would make him sterile, or somehow affect his testicles. Other people tell me they think the vaccine is killing more people than COVID. You can go on the internet and see all these things. I had one patient tell me her family is against it and if they find out she got vaccinated they would kill her. It’s a purely political thing for them. People have various reasons, but, as with masks, there is bizarrely a political angle to it that is hard to explain.
Calabrese: Anything from a belief that the vaccine is going to cause a new problem, to knowing someone who in their mind died after they got the vaccine, or they heard about someone who died after they got the vaccine. They haven’t been around long enough; they don’t trust them. Believe it or not, we still encounter people who think they’re putting magnets in your arms. Yesterday, I saw someone who doesn’t believe in the vaccine technology because ‘they use stem cells.’ I don’t even think that is true, but I didn’t go there with her — she just was not hearing it.
There are people who are conspiracy theorists, who believe the numbers reported on the news are a lie. It sounds like it should be something made-up or in our nightmares, but there are people who think all of these things and openly share them with us every day. Some of those with more extreme excuses are really not open to having their minds changed.
But there are many people who are open to it, and that is why is it so important to still take a couple moments out of every patient visit and ask them if they have been vaccinated — and if they haven’t, why not — and address those concerns, because a lot of people just are scared or heard, or were told, wrong information from social media or friends.
Q. Whether it’s from a health care professional or a celebrity, how does misinformation from someone with a large communication platform, or from a person with perceived power or knowledge, impact vaccination efforts? How does it impact patients?
Calabrese: It’s hard. For me and my dad [Leonard Calabrese, DO, of the Cleveland Clinic], to our minds, we can’t comprehend a medical professional who would not go out of their way to make sure their patients are getting correct information and encouraged to get vaccinated, but there are health care professionals who don’t feel that strongly about people getting vaccinated, and then don’t recommend it to their patients. That is really not helping the cause.
Staying on top of the information and data with COVID-19 is like a full-time job, so there might be some rheumatologists out there who are still unsure how to field questions from their patients who ask, ‘Is this going to flare my autoimmune disease?’ And they just might be overwhelmed or not have enough time, or not feel comfortable and be uncertain in their recommendation when patients ask those questions. But there are health care providers who, unfortunately, are not recommending and advocating vaccines for patients.
There are a lot of patients I have whose family members are in health care. I saw a patient of mine last week who has cancer and is on immunosuppressive therapy for a side effect of this cancer treatment. He’s unvaccinated, and his wife is unvaccinated, and she works at a nursing home and told me that half of the employees at that nursing home are not vaccinated.
This is very real. For as much time and effort as we put into talking to patients about this every day, there are still large groups of patients, persons, health care providers that are just not sure or firmly against getting vaccinated.
When celebrities say things like that on social media, unfortunately, its just echoing things that noncelebrity people are saying all the time. It’s just not getting called out the way people have called out Nicki Minaj in the news. It’s all just fueling this problem.
Winthrop: People who are cultural personalities can influence people one way or the other — that is why they call them influencers. It is important to have people who are influential touting the vaccine.
You saw [former President Donald Trump] get booed at one of his rallies recently because he said he got vaccinated. The crowd booed him. I even had a patient who is a big Trump supporter, and she was unvaccinated, and I told her, ‘Well, jeez, why are you refusing? Even President Trump got vaccinated.’ And she said, ‘Well, we don’t believe he really did. We think it’s fake news.’ That is what she told me — how do you combat that?
People will believe whatever they want to believe, I guess, but I think it is important when celebrity personalities or people who are prominent in the public eye react one way or the other toward vaccination, because it can influence people.
Q. How do you combat this vast misinformation?
Calabrese: The most important thing is to bring up the question in clinic, and if you find someone who is unvaccinated, to ask why and what their concerns are, in an open-ended, not-angry and not-belittling way. You listen and provide the correct information, as well as acknowledge and inform them that there is a lot of misinformation out there, and that they are not alone if they have heard or read misinformation. It also depends on the patient’s reason for being hesitant.
You can cater your approach based on their reasons or what they have been told, but I think it’s important to be kind and not talk to them as if you are angry or disappointed, or worse, think they are dumb. I’ve had patients who, after much discussion, at the end said, ‘Thank you for talking to me and not yelling at me for not being vaccinated like everyone else does. You listened to me and thanks for explaining this to me without being mean or mad or making me feel stupid.’ It’s important to approach it in the right way and to kind of read the room.
There are some patients who just completely shut down and turn off if you bring this up, and they don’t want to talk about it, or they don’t want to share their reasons with you. Each scenario is so different, but I think to hear them and understand, and then share the correct information in a not-putative way is the best strategy.
Winthrop: I think some people you are never going to be able to turn, but I do think it depends on who the patient is, of course; with the three that I turned, I have good relationships with all of them. I think in the end they decided to trust me.
I think part of it is also that I’m involved in a lot of these studies and research, and I can tell them my personal experience and vouch for the veracity of what has been published.
I can tell you what had the biggest impact, though. It was this little graph that our hospital prints out every day showing the figures of people who are dying or about to die, or are dead, or are in the hospital. The yellow figures are the unvaccinated and the white figures are vaccinated, and there’s almost no white figures on there. They’re almost all yellow. Those types of graphics are visually impressive to people.
I just showed that to the last patient, I said, ‘Look at that, all these 26 people on a ventilator and all of them are unvaccinated and almost all of them are going to die.’ And I said, ‘If you get COVID, given your immunocompromised status, you would have high likelihood of dying, and I don’t want you to be one of those people.’
And so she buckled, and got vaccinated. But she is someone I have a good rapport with, and she trusts me. Obviously, many times you can’t overcome these deep-seated beliefs, and people will use the misinformation to support whatever they think. Maybe a third of those who are hesitant can be convinced. That is my belief based on my own personal experience and the data I’ve seen.
Q. What are you telling your patients about the risk for breakthrough cases among immunosuppressed patients?
Calabrese: Breakthrough infections are occurring, even in fully vaccinated healthy people. It’s not common and patients usually do quite well if they are vaccinated. The main issue is that you are still quite infectious if you have a breakthrough case, so that is something to be aware of, especially if you have unvaccinated persons in your household.
However, if you are immunocompromised, on certain medicines that might not have given you the best immune response to the COVID vaccine, then that breakthrough case can be more severe and significant. The setting where we are seeing that most clearly is patients who are on B-cell depleting agents like rituximab (Rituxan; Genentech, Biogen). There are now several reports of this in the literature, and we are also looking at this the Cleveland Clinic. We have had, unfortunately, many fatal cases of breakthrough COVID in rituximab-treated patients.
I don’t have any numbers to give you, but other scenarios include patients on high-dose steroids at the time of their vaccine who were on JAK inhibitors or methotrexate, their vaccine response was also probably reduced.
However, rituximab-treated patients, and other patients on B-cell depleting agents, like those used for multiple sclerosis, they are doing really poorly with breakthrough COVID. In addition, this is a group where it’s very important to diagnose them early and aggressively manage them in the outpatient setting with monoclonal antibody treatment, like the Regeneron product. This is exactly the type of patient who can benefit from this early treatment with spike protein monoclonal antibodies to reduce the risk for progression, hospitalization and death.
We are really trying to make our more vulnerable patients aware that if they are exposed to COVID, if they suspect they have COVID, we need to know yesterday and get them hooked up for treatment with monoclonal antibodies.
Winthrop: The risk for a severe breakthrough is almost nonexistent. However, for people who are under-vaccinated, either because they haven’t been vaccinated or they haven’t completed the series, or because they are on immunosuppressants and didn’t have a good response, further vaccination is the key. For the population of people who have already been vaccinated, that means getting them a booster.
Q. Are patients asking about COVID-19 vaccine boosters?
Winthrop: Yes, every single patient has asked about boosters. I’ve agreed with the FDA’s decisions to date. They approved boosters pretty quickly for the immunocompromised, and then of course you saw the decision on [Sept. 17] regarding the non-immunocompromised, restricting boosters to people who are older than age 65 years. I think the data supports that. I think the data barely supports giving boosters to people older than age 65, because there is not much drop-off in efficacy whatsoever, and it’s not in all studies.
The studies that perhaps have been the best done, I think, in terms of large cohort studies, don’t show much diminishment at all. The ones that are case-control type studies tend to point toward some diminishment, but it’s modest or mild and largely relegated to older individuals.
I think there is no question that a booster is probably beneficial to those people, but it’s kind of barely needed — that is my opinion. It will get more needed next week, and the week after, as we go along, but the FDA’s decision is one I largely support.
I think that organizing giving a booster to 200 million people is kind of a big deal, particularly when you don’t know what the right thing to do is. I think what the FDA did is buy some time for us to figure out the best way to boost people over the next couple months before we really open it up. Because it may be that we should be boosting with a different vaccine than what people started with. We don’t really know the optimal way to do it, and we don’t know the optimal timing of it. There are some things to figure out in the next couple months with studies before we just go ahead and start boosting everybody.
Calabrese: Like the vaccine conversation, we have the booster conversation as well. Every patient, we ask if someone has talked to them about a COVID-19 vaccine booster, and then we recommend this to them. Essentially, the CDC verbiage is a little vague and confusing, so we on the [American College of Rheumatology] COVID-19 Vaccine Task Force, led by [Jeff Curtis, MD, MS, MPH], have our most recent iteration where we include recommendations surrounding booster vaccines.
We recommend booster vaccines for all immunocompromised patients, short of someone on Plaquenil (hydroxychloroquine) monotherapy. However, for everyone else, even if you are on 5 mg of prednisone per day, chronically, we recommend you get a booster. Any patient on a biologic, on any DMARD, any chronic daily dose of prednisone, with the exception being Plaquenil monotherapy.
The only uncertainty here is that we don’t know how much a booster is going to help our patients. However, given the data to date on solid-organ transplant patients, bone-marrow transplant patients and some rheumatic disease patients, a proportion of patients will benefit from a booster. We don’t think it will hurt. We are in favor of over-boosting rather than under-boosting and recommend that everyone get a booster.
The most important message is that regardless of booster or no booster, patients need to continue to maintain nonpharmacological interventions with masking and social distancing, even if they are fully vaccinated with a booster, until things get better.
The way out of this pandemic is not to boost people who have already been vaccinated but to vaccinate the unvaccinated, but you might as well do everything you can to protect our vulnerable patients.
Q. Have any other drug-specific concerns regarding the COVID-19 vaccine been uncovered since January?
Calabrese: Rituximab is the big one, but we also know about higher-dose steroids, JAK inhibitors as a class, methotrexate, abatacept (Orencia, Bristol Myers Squibb), mycophenolate mofetil — I think we mentioned that in January — and probably a lot of other drugs we use.
What we feel don’t impact vaccine responses are TNF inhibitors and other cytokine inhibitors like IL-17, IL-12/23, drugs used in, for example, spondyloarthritis, but many other ones do — tacrolimus [Prograf, Astellas Pharma] and probably leflunomide. We don’t have so much data on these drugs. However, in order of importance, it’s rituximab, high-dose steroids, mycophenolate, JAK inhibitors and probably methotrexate too, and abatacept.
Winthrop: Any B-cell depletion therapy is the biggest concern. MMF is probably very close by, and tacrolimus also. I think there are lesser concerns with the JAK and TNF inhibitors, but there are fairly decent concerns with abatacept — I would rank that in between rituximab and TNF blockers, for example. There is no question, I think, that abatacept should diminish vaccine response given its MOA. However, it doesn’t do so to the same extent as B-cell depletion therapy.
I think our concerns with the COVID-19 vaccine are consistent with what we know about other vaccines and DMARD effects on those vaccines. It is largely lining up quite well with our experience with other vaccines, in terms of DMARD impact on vaccine-induced immune responses.
Q. What should providers and patients know about COVID-19 vaccines for children with rheumatic diseases?
Calabrese: I will not pretend to know much about pediatric medicine in general. There is expected to be authorization and hopefully FDA approval for vaccines in patients aged 5 years and older. I think this is an important group to vaccinate because while most of the time they, fortunately, aren’t very sick with COVID-19, they are good spreaders of COVID, and it’s a problem if they live with older family members who are immunocompromised or are unvaccinated.
Q. How has the delta variant impacted your patient care?
Winthrop: I’m back to doing mostly in-person visits, which is great, but probably a third of my visits are still virtual, which is fine. It will probably stay that way forever, which works out fine for some patients. Patients are not nearly as hesitant to come in as they used to be, because they’ve been vaccinated. I would say that I haven’t been affected that much, but we’re not quite back to normal yet. In terms of new COVID cases, things here have worsened quite substantially the last few months. We’re going back to cancelling elective surgeries and things like that.
Calabrese: We were always in-person, and, if anything, I’ve always considered myself to have been busier over the past year. We certainly have patients who don’t want to come in, who are worried. We have a lot of patients converting to Zoom or cancelling their appointments now because they have COVID-19 and can’t come into the clinic.
However, the 2021 version of the Plaquenil shortages for rheumatic disease patients is that, as a result of COVID-19, we are now out of IV tocilizumab (Actemra, Genentech), which we use for giant cell arteritis and rheumatoid arthritis.
As a result, we are having problems with patients scheduled for their outpatient infusions for treatment of their rheumatic disease, and we don’t have any and we are really stuck. The surge in the number of hospitalized patients with COVID has depleted our national supply of tocilizumab for our rheumatology patients, so that has been really problematic. However, I’d say we are just as busy as we ever were.
Q. Do you have vaccine mandates for staff at your institution?
Winthrop: There is now, at our university. Of course, you can get out of it if you object upon religious grounds. So, everyone who wants to get out of it, can.
Calabrese: Surprisingly, no. I favor mandates at medical centers. I think it’s important for patients for all health care providers to be vaccinated, especially providers at every level who interact with immunocompromised patients. I think it is of the utmost importance that they be vaccinated.