Public health leadership to prevent long COVID in children

While Australia is rapidly improving its COVID vaccination rate, the pandemic is far from over. As we contemplate new variants, and are reminded that COVID is still a significant risk, both within Australia and globally, it is important that we make space for expert views from people with lived experience of complex and/or chronic illness which further increases the risk of COVID complications. Today’s post is from Dr Andrew Joyce, Senior Research Fellow at the Centre for Social Impact at Swinburne University of Technology. He specialises in continuous quality improvement evaluation for complex social and public health policies and programs. He also has personal experience of chronic fatigue syndrome (CFS/ME)

Even being vaccinated there is a risk of a break through infection and triggering the worst of the symptoms again. Image: Upsplash.

I have been living with chronic fatigue syndrome for six years. It started about a year after I finished chemotherapy treatment for a lymphoma and was triggered after contracting whooping cough and a gastro virus in quick succession. I experienced profound lethargy, dizziness, ‘brain fog’, altered bowels, sensitivity to noise, and swollen fingers and toes. It took one year to stabilise the symptoms, three years before I could leave the house for a social coffee and four years before I could swim at the beach with my kids. I worked part-time during chemotherapy treatment and full-time immediately after. I couldn’t work at all during the peak of the fatigue symptoms and it took five years before I could work decent part-time hours again. I wish I could have prevented this.

COVID has been hard. Even being vaccinated there is a risk of a break through infection and triggering the worst of the symptoms again. I feel for people with long COVID. My story seems an average experience, I hear of both worse stories than mine and those with milder long COVID experiences. I have been grateful that in Australia, governments have been focused on preventing cases as much as possible. Yes mistakes were made but the intent has been there. Unfortunately governments have moved away from a strategy of reducing cases, focusing almost entirely on vaccination rates. This means that for people such as myself who are still vulnerable to being impacted by Covid infection even if vaccinated the risk is higher now than in the past. This is especially the case in Victoria where case numbers are the highest.  

While the majority of children experience mild (non-hospitalised) acute symptoms from COVID infection, they can also experience long Covid symptoms. Current research into long Covid in children has been lacking and the studies that do exist have serious limitations. There is urgent need for more and better quality studies to understand to what extent long Covid impacts children. However, it seems from early data that approximately only 2% of children have symptoms that extend beyond a couple of months and thus would only become a problem if case numbers in children cannot be kept low. However this is not currently happening in NSW and VIC where children now make up the largest percentage of cases, with many schools having Covid cases, particularly primary schools where most children are under 12 and thus unvaccinated.

If we want to protect a small minority group of children from possible longer term uncertain impacts of Covid infection we need to change strategy. The current approach in schools does not seem to be working. Governments are currently hampered by public weariness, highly vocal protests, and political posturing leading up to elections. They cannot be seen to be calling for greater restrictions, including school closures, although this new variant may change the politics. In this situation it is up to professionals to take up a leadership role.

From an evaluation perspective in a complex policy setting, if data emerges that indicates current strategies are not working it is imperative they are changed. In Australia we have been very well served by leading epidemiologists who have provided excellent communication throughout the pandemic and they continue to do so. Based on current community transition rates, there have been many leading experts recommending rapid roll out of the vaccine for the 5 to 11 year old group and robust mitigations in schools including ventilation audits, CO2 monitoring in classrooms, and supply of HEPA filters where ventilation is inadequate, and mandatory masks for students and teachers.

However, there have been a smaller group of child health experts that have received considerable media coverage and have taken a slightly different and at times perplexing approach. At our daughter’s school, parents were advised to read the material of these child health experts about how mild COVID is in children. A couple of weeks later the principal had to send communication home pleading for parents to send their children to school with masks and to stop sending their children to school with COVID symptoms. All schools in our region have cases, with some significant clusters emerging. There was an outbreak at a local school originating from a swimming program that caused the school to be closed.

If I was running an evaluation I would be wanting to investigate these cases in much more detail and surveying lots of parents and schools. Is this part of a larger trend that can help explain school clusters and growing case numbers? Are parents and schools becoming somewhat complacent? Do we need to radically alter our communication and policy advice to government? What are the unintended consequences of our messaging? Research has shown that messaging to parents that Covid is not something to be concerned about in children had the unintended consequence of increasing vaccine hesitancy.

Potentially these communication materials were produced with the noble aim of reducing parents’ concerns around children contracting Covid given the lower risk of serious short-term illness and hospitalisation in children. What is more puzzling is recent media communication from this group emphasising the need not to discriminate against teenagers who are not vaccinated based on mental health reasons. However, this messaging aligns with the antivaccination and far right protest groups. It would have been very easy to craft a message emphasising the need for these young people to be vaccinated to protect themselves family members, and those in the community who may be vulnerable while also pointing out the need not to discriminate. This was not how the message was framed. It would be interesting to know if this message was pre-tested to ensure it did not align with far right, anti-vaccination libertarian groups.

Even more peculiar is what is not being said. There are no articles or press releases that I am aware of from this group that emphasises the need to do whatever we can to protect vulnerable children. From an equity perspective this is unfathomable. There has already been a death of a child in Victoria. The research is not clear on what makes a very small percentage of children vulnerable to COVID but such a group exists and potentially in the future what predisposes such risks will become evident. For the sake of this small group of children there needs to be best practice mitigations against Covid implemented consistently across all schools, with much greater resourcing, and this needs to be audited to make schools accountable. Policy guidelines and current resourcing levels are proving insufficient. The current approach for children and schools needs to be drastically improved and soon. We need strong professional voices to advocate for vulnerable children.

If schools continue to see cases and clusters and thousands of children under 12 continue to be infected even at a very low percentage rate of risk, we may see hundreds of children and their parents coping with long COVID in 2022 based on the overseas evidence to date. This must be prevented. No parent wants to have a child with long COVID for even a few months, that may prevent them from activities such as playing sport and attending school. Further, increasing numbers of children infected with Covid increases the risk of hospitalisations, cases of MIS-C and even another child death. Irrespective of when the vaccination for 5-11 year olds is approved and rolled out in Australia we need to be doing far more to make schools safe and we need strong professional leadership to make this happen.