Long Covid and learning from past trauma
In the coming days, a sombre annual ritual will take place in lower Manhattan: the ceremony held on September 11 to honour the victims of the attack on the World Trade Center in 2001, when almost 3,000 people died. This year’s event will incorporate something new, says Elizabeth Hillman, president and chief executive of the 9/11 Memorial Museum. A moment to honour the long-term suffering of the wider community around the World Trade Center.
One of the most disturbing legacies of that awful day has been that the toll of casualties did not end in the days and weeks following September 11. According to the US Centers for Disease Control and Prevention, more than 125,000 responders and survivors are suffering from long-term health problems caused by the attack. These range from lung disease caused by inhaling toxic smoke, to mental health conditions such as post-traumatic stress disorder, or cancers linked to chemicals. An estimated 31,000 have a certified cancer.
Unsurprisingly, premature deaths in this cohort are high. Kerry Kelly, the former chief medical officer of the Fire Department of New York (FDNY), who got caught in a toxic smoke cloud at the WTC on September 11, says that the number of firefighters who have died from long-term 9/11 afflictions “is now approaching, if not exceeding” the 343 who perished on the day itself.
As Hillman observes, when a disaster occurs, “it is easy to understand the immediate effect”. But, although the government spends $15mn a year funding research to help the victims and organisations such as the FDNY are offering healthcare, it is hard to maintain public awareness and get what Hillman calls “support for the long-term effects”.
This has wider lessons for other traumas, says John Howard, administrator of the World Trade Center Health Program. “Every time I see a disaster in the US, we always look at what happened in 9/11,” he says. Take Covid-19.
The World Health Organization currently estimates that, since 2020, almost seven million people around the world have died from Covid. But millions more still suffer from what is called long Covid, defined by the WHO as health problems that linger or develop three months after the initial infection. These can include lung damage, extreme fatigue, brain fog and post-traumatic stress disorder.
Those suffering from long Covid often feel forgotten, in part because the medical establishment is struggling to define, let alone treat, this new condition. As Jana Javornik, a lecturer at Leeds university who suffers from long Covid, told the FT a few months ago, “We are all neglecting that long Covid is not rare and it is a health crisis.”
One reason is that no one knows exactly how many people have long Covid. A study published in the scientific journal Nature in January estimated that 65 million people are currently suffering with the condition, but suggested that the real number is probably much higher.
Another problem is that scientists themselves disagree about how and why long Covid develops. Some medical research groups, such as IGeneX, think that the symptoms seem “similar to chronic Lyme disease, a condition that affects thousands of people a year”. Lyme is also hard to diagnose, and thus often easy to ignore, because it creates slow-burn, half-hidden suffering that attacks the immune system.
What is clear is that many people find it hard to work or function with long Covid. The Institute of Health Metrics and Evaluation recently published a study in Nature that analysed the medical records of 140,000 people in the Veterans Affairs health system who had contracted Covid in 2020, before vaccines were administered. It concluded that long Covid is causing a higher burden of disability than either heart disease or cancer.
So, are there lessons from the post-9/11 experience for Covid? The medical experts handling the former certainly hope so. A key one is that it’s a good idea to create a registry of victims in a consistent way so that scientists can conduct effective research to validate and ease their suffering. This might sound obvious but was not easy to implement after 9/11, given the fragmented nature of US healthcare. It could be even harder for Covid.
Another is that scientists need to keep an open mind, hence the importance of longitudinal studies which track the same individuals over a period of time. A third is that it pays to start lobbying for funding to help victims as soon as possible. These days, the US government’s official 9/11 fund provides considerable help for long-term sufferers, but it took 10 years of campaigning to ensure that the problems did not get ignored. Let’s hope it’s a quicker process for long Covid victims. Silent suffering deserves more noise
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This story originally appeared on: Financial Times - Author:Gillian Tett
