The WHO is letting down long Covid patients
The WHO recently released its clinical case definition for what it called “postCovid-19 condition”. This definition is too little too late, its myopic scope does not recognize the breadth of disability and disease caused by long Covid and its long term implications on quality of life and life expectancy. The millions of people around the globe suffering from long Covid deserve better.
It is unclear why the WHO definition snubs and does not embrace the term “long Covid”. The term was coined by patients who also refer to themselves as long-haulers. These patients-advocates-researchers galvanized attention around the existence of this disease and brought long Covid to the spotlight. In a short few months, they created a formidable patient-led advocacy and research movement that changed the arc of medical history. They were the first to survey their membership and catalogue the broad array of clinical problems caused by Covid-19. Their contributions will go down in the annals of history as an important inflection point.
Arguably, without them long Covid would have remained a peripheral condition disregarded by governments, health systems and academic research as a fringe problem. They represent the 21st century version of the brave HIVAids activists who changed the ways in which governments and the public dealt with HIV-Aids. These are the Larry Kramer of Covid-19. They deserve enormous respect, and recognition, not only by including a few of them on the WHO panel, but also by recognizing that without them none of us would be talking about long Covid. They should be celebrated and recognized as heroes. The term “long Covid” should be officially embraced by the WHO.
Beyond its lack of embrace for the patient-created name, the WHO definition is solely based on symptomatology, ignoring a lot of the longlasting clinical manifestations caused by Covid-19, including new onset diabetes, heart disease, kidney disease. These are chronic conditions that will scar affected individuals for a lifetime. They affect not only quality of life but also life expectancy. Given the millions of people affected around the globe, this will certainly result in a rise in the global and national burdens of
these diseases, putting additional strain on already overwhelmed health systems. This deserves recognition now to ensure that our governments and health systems are prepared to deal with the tide of patients with these chronic conditions.
Failure to recognize that the longterm ramifications of Covid-19 also include development of new onset chronic metabolic and cardiovascular disease will leave us yet again unprepared to deal with the huge after-effects of Covid-19 – a critical public health crisis that will reverberate for decades to come. The downstream consequences of long Covid will not only shape health outcomes, but will also have broad economic, social, political and global security implications.
The WHO definition also conditions the diagnosis on the idea that symptoms cannot be explained by an alternative diagnosis, which makes long Covid a diagnosis of exclusion – further marginalizing this disease. I worry that this myopic definition of long Covid may be used by governments and health insurers to debase the disease and deny insurance coverage. It may add fuel to the gaslighters’ fire, providing them with a moral license to sow more skepticism around the existence of this disease and brand its ill effects as an “invention” of patient activist groups.
The WHO delivered a suboptimal response to Covid-19; they hesitated for weeks before they declared Covid-19 a public health emergency of international concern on 31 January 2020. Unfortunately, the WHO’s slow and calcific response to long Covid is on track to repeat the same mistakes. The millions of sufferers around the world deserve better. The WHO, national governments and health systems around the world must do a better job preparing for long Covid. Failure to recognize the scope of the problem and prepare for it now risks eroding much of the progress made in global health over the last decades.
Ziyad Al-Aly is a physician-scientist and long Covid researcher