COVID-19 And Cystinosis Thoughts About Returning To School and Work By Paul Grimm, MD

Thoughts on Returning to School and Work
Paul Grimm, MD

Regarding return to school in the fall for patients with cystinosis or post kidney transplant or are on dialysis what is a person to do?

This is a question being asked all over the country and the world. I am involved with a number of large organ transplant centers to try to set up some guidelines or best practices or recommendations but it takes time when a committee is working. It also is hard because the data keeps changing as we learn more and more about this virus. When they are ready for prime time, they will be disseminated but until then here are some ways to think about it.

There are 3 issues, the 1st is how high is the risk in the individual patient? The 2nd is what is the prevalence of the virus in their local community? And the 3rd is what are the specifics of the school or work environment they find themselves in? There are a few other miscellaneous issues. But for each of these, the situation of an individual patient will be different than someone else and so the parent or patient or relatives must try to make an assessment of their situational risks.

An overarching principle is that school is good for kids. They get so many benefits from school that there is substantial risk in keeping them out for prolonged periods of time. We are seeing depression, school problems, trouble at home, increased stress amongst the family, and even reduced intake of healthy foods in children who are forced to stay at home. We don’t know how long this issue will last. Who knows when a vaccine will be available? And we don’t know how well a vaccine might work in someone who is already immunosuppressed or chronically ill so there are many unknowns; basically, a vaccine isn’t gonna save us anytime soon. It also appears that this virus is going to wax and wane off and on for the foreseeable future.

Let’s take these individually. Starting with Issue number 1, the individual risk of the patient. The data shows that children and young adults are much less at risk than are adults. Statistically, very few children become significantly ill. In addition, the population of people on transplant immunosuppression, in general, seems to have no higher risk than the normal population. However, there are a number of specific areas of concern. For example, how immunosuppressed is the patient? If they are a “fresh” transplant within the 1st couple of months, they are on a very high dose of immunosuppression and at risk from all sorts of viruses. If they have recently been treated for rejection, they also have more intensive immunosuppression. On the other hand, if they are at a very low dose of medication that has not been changed for years, the risk is much lower. People who have not had a kidney transplant but have chronic kidney disease are thought to have a mildly suppressed immune system. Those on dialysis are thought to be more at risk but this might be because they have other co-morbidities. Do they have concomitant morbidities that increase the risk of COVID? Obesity, chronic lung disease, diabetes, and others all increase the risk for that individual.

How willing and able (developmentally or behaviorally) is the child or young adult to follow the rules? Are they going to be able to keep that mask on all day in school? Are they going to follow the rules about social distancing? Are they going to stay away from kids who are obviously sicker? Are they going to be able to refrain from hand to mouth activities and wash their hands many times a day?

Issue number 2, a perfect example is the state of California. I live in the San Francisco Bay area where our prevalence is really really low. However, if you live in the same state, California, but just north of the Mexican border the prevalence is currently spiking to a dangerous level. If you live in New York City, it’s possible that many or most of the highest risk patients have been infected and the rest of the population might be relatively resistant to getting the infection. While I’m writing this note, the city of New York announced they had gone 1 or 2 days without a single COVID death. So what was a horribly dangerous and high-risk area, New York City, now, only a few weeks later, looks quite safe. So what this means is families will need to keep a pulse on the activity of the virus in their local community. Because even if you break it down to a state level, there still can be vast variations from town to town or community to community.

Issue number 3, the environment of the school. Is there enough staff and the political will to ensure the kids keep their masks on? How crowded are the classrooms? The data suggests that if you wear masks 3 feet might be adequate, but that means masks have to be worn by everybody. If masks are coming off a lot, then probably 6 feet is the minimum. Are there lots of opportunities to wash hands or disinfect? What happens in the hallways between classes? Is it the scrum that I remember from elementary school and high school, bumping into people as people are jammed into hallways trying to make it to the next class without being “tardy”?

What is the communication with the school like? Will they have an open line of communication and tell you if there are suspected cases in the school? Will they consider disinfecting the school if a positive case is identified? Would they shut down the school for a couple of days to disinfect? To be honest, I don’t know how important any kind of fomite transmission is because a lot of people think that even though you can detect viruses on surfaces that the virus is lost the ability to make you sick. But who knows?

So, in summary, patients who are considering or families who are considering sending their child back to school need to be aware of these 3 categories to try to figure out what their specific risk is and to make an informed choice which may change from week to week.

Another important point is the risk of getting hit by 2 viruses at the same time or one after the other. That could be a very severe situation with a higher risk of permanent disability or death. We are seeing a dangerous fall in the immunization rates for vaccine-preventable diseases like influenza. People may be afraid to go to doctors’ offices, but for anybody who is chronically ill, there is a real serious risk that if you got co-infected by 2 viruses i.e. COVID but also the flu you could get much sicker. And it would be a shame because the flu can be prevented or made less severe by vaccination. So nobody should skip vaccines at this time.

Other questions come up about whether or not a sibling of a cystinosis patient or kidney transplant patient should be allowed to go to school. In general, the sibling should go to school is the consensus of most experts. One of the things which have come out that is quite reassuring is it looks like children actually don’t transmit the virus as adults do. Recent studies that are being reported now suggest that if a child is infected in the home it is unlikely they will spread it to another family member. On the other hand, if an adult is infected in the home it is very likely they will spread it to another family member. So that means there is a little bit of reassurance that even if you let your child’s siblings go to school… If they get the virus the transmission rates are lower than you would think. But of course, you have to use common sense, if the sibling is identified to be infected there should be some kind of distancing that takes place until the child recovers.

Finally, for adults. School is just one aspect of your life that you can control when you’re younger, but the workplace is vast and varied. How do you make an assessment? It of course is complicated, but considering the same 3 categories apply to your own personal situation could be useful. I have also attached an interesting table that was released by the Texas Medical Board that tries to quantitate the degree of danger of many day-to-day activities. My eyes were opened a little bit by this.

So, although there is no hard and fast answer, it looks like this kind of framework could help people make that decision. More definitive guidelines are being developed and will come out but maybe you could pass this around to your friends in the cystinosis community as a way to start a dialogue in the community.

Paul C. Grimm MD
Professor of Pediatrics
Medical Director, Pediatric Kidney Transplant Program
Dept of Pediatric Nephrology
Lucile Packard Children’s Hospital
Stanford University School of Medicine
G306, MC 5208
300 Pasteur Drive
Stanford, CA 94305-5208