The sun rises but it’ll never be the same again.

Article No. 347

1 June 2020

We are aware of an illness that has no cure. Once triggered it  can ignite the immune system to uncontrolled and damaging activity and that cannot be treated.
No not aHUS, that can be treated effectively. Although 10 years ago it could not , and in some parts of the world today it still cannot be.
This illness is COVID 19. Many  in the aHUS community can understand the impotence that society in general now feels about the threat of the COVID19 pandemic.
Most of those who have experienced an aHUS episode would have had no awareness about what was about to hit them. Then comes the “car crash” and everything changes for you and your family.
First of all that frightening feeling when medics cannot say what is wrong with you. You always believed they would know.
Then them not knowing what to do for the best for you. You always thought there would be a medicine or just something to make it go away.
And things just get worse and worse. After all, dialysis is something that only happens to other people, isn’t it?
The  awareness of a lost sense of immortality is shattering and then followed by a  loss of confidence in the capability of medical science. Whilst  surrounded by those whose anxiety is boundless. They too will not be same people they once were. Once seen it  cannot be unseen from now on.
Contrast that with the whole world being made to fear their susceptibility to possible death from something that has no cure and there is no treatment , with the possibility that things will just get worse and worse once infected.
Around the world, quite understandably,  it is now emerging that there is a spectrum of outcomes from a  COVID 19 infection.
At one extreme there are many who are asymptomatic, with perhaps some sub clinical activity going on. Then there are those who have mild to tolerable symptoms, treated at home. Others whose breathing becomes difficult have been admitted to hospital and get specialised treatment usually with oxygen , whether by ventilator or just masks. Others develop more serious complications, including sepsis, and are  treated in intensive care. Some die.
Governments  have introduced  country wide interventions to protect their populations. There may  have been some cost benefit assessment of those interventions but there is no evidence that those assessment have been done in the same detail and with the rigor as  there would have been for a clinical intervention such as a complement inhibitor for aHUS. With COVID 19 Governments seem to be  acting as though they cannot put a price on a life. Ironic for those unable to access eculizumab because of lack of cost effectiveness.
Perhaps the analysis might have been similar to the way our sister disease, HUS , is looked at by public health authorities.
COVID19 disease  is similar to an E. coli 0157 infection. Some people with an E Coli 0157 infection show no symptoms, others may have mild stomach pains. For others sickness and diarrhea becomes profound but treatable palliatively at home. Then some become very dehydrated needing hospitalisation. Some experience an infection thrombotic microangiopathy (TMA) ,or HUS, and need treatment for acute or chronic kidney failure by dialysis, sometimes in intensive care. Some die.
Those with aHUS can identify with those who have experienced  typical HUS and will understand those experiencing COVID19 right now, as those with COVID 19 might now understand better those with  aHUS. If  they were ever aware.
At the turn of the 21st century, two health economics researchers , Professors Jennifer Roberts and Jean Busby,  undertook a study of the cost to society of food borne diseases ( including E. coli 0157). Their work has been built on since and their  estimated costs of an outbreak  have been used to justify expenditure on public health interventions to avoid future infections.
Public heath interventions attempting  to  block transmission by good hygiene practices from washing hands , cleaning surfaces  to food safety standards such as food storage temperatures and packaging. The interventions cost money but were justified by the opportunity cost of the alternative i.e. wide spread infections destroying economies/societies.
Those costs include both:
Medical-  ( acute) -self treatment, visit to doctor , hospitalisation, intensive care, plasma therapy emergency   dialysis; ( chronic ) dialysis, transplants , psychological post traumatic distress and depression..
Societal- loss of productivity work/education ,  premature deaths
Premature deaths from account for the most of health economists estimates of opportunity costs of infection outbreak. Each is valued at around $6million.
Much the same applies to the health economics  of COVID 19 but on a much bigger scale. ( As at 1 June 2020 according to the worldometers” site  there  have been 6,286,366 incidents of COVID 19 ( spread over 215 countries) and 374,322 deaths. Such precision! Compare  that with the incident and prevalent numbers for aHUS for which no number is collected and published whether by any country let alone continental or  global level even though numbers are in the thousands. Probably  about 1500 aHUS so far this year, maybe.
The  impact of premature deaths and loss of productivity for world economies is substantial.. There have also been significant changes in ways of working which will continue to be adjusted for social distancing to prevent virus transmission.
It is too soon to assess the long term psychological damage to patients and their families but it is going to be significant and compounded by a much wider societal impact. Not least from the fear created to ensure compliance with “lock-down” rules to limit and reduce the spread of the virus.
The question is increasingly being asked just  how can things return to normal or even what  will the “new normal”  look like.
Big questions to answer at a world level.
As with everything much depends on risk based decisions to be made by all. Such decisions will be dependent on susceptibility to future infection. Soon tests for acquired  COVID antibodies will be ubiquitous.  A positive result will  mean an individual probably is no longe susceptible, unlike a positive aHUS genetic susceptibility test result which means that there is an ongoing risk of aHUS.
It will leave those who test negative still vulnerable. But a lot has also been learned from the experience of the first wave about those most vulnerable and at high risk. They appear to be more likely to be older, overweight, Male, black/asian/minority ethnic, diabetic and with existing cardiovascular disorders, ( a contrast with aHUS where those most at risk appear to be young , female, Caucasian ,complement defective   and have just given birth).
The social distancing, hygiene and isolation practices will still remain very important in all they do until they too can acquire immunity either by surviving an on set of COVID 19 or ,hopefully sooner, a safe and effective vaccination against the virus becomes available.
Questions that have had to be answered by aHUS patients and their families after their personal catastrophic life event. A disequilbrium entered their lives  which went spiraling downwards until it reached its lowest survival state and then things began to shift upwards at a pace reflecting their physical and mental health status and social support.
In many respects it is like a journey that embraces the stages of the grief process denial, anger, bargaining, depression, acceptance.
As far COVID19 collectively global  society is primarily going through the anger stage. Largely expressed  at political level  in  every country but at individual level too with increasing criticism of perceived breaching of lock-down protocols within the media ( particularly the social media)  fueling the “braying mob” and “witch hunting” and aggressive exchanges frequently based on previous partisanship divides. Terms like  “COVIDIOTS ” have been created. Doubts are expressed  about whether things should and could  have been done differently with the benefit of hindsight. Who is to blame? There is a need for a scapegoat.
Some signs of bargaining are showing as governments begin to make decisions about moving from the loss of freedoms that have been imposed to a return to way of life in which many will want to be personally protected and in a much safer environment. Something they were not thinking about six months ago.
Trade unions and employees throughout trade and industry will bargain with employers about working conditions that respect social distancing and protective hygiene standards. The word  “COVIDsecure” has been created . These public health interventions  throughout society will be at a level which  those who advocated for e coli HUS could only dream of and in their case they would have been very much resisted. It will be interesting to see whether incidence of E coli 0157 infections drops as a benefit.
There is already talk about a collective depression stage when the full reality of the damage done to health and economy is  assessed. There has been significant premature death and substantial loss of productivity as workers and students were asked to stay at home.
Then, in time, there will be acceptance. “In time” because time will move on and as they say “this too will pass” as global disasters have done in the past..
That is one thing that those patients and families who have encountered aHUS in the past say to reassure those in the throes of an episode and cannot see a future.
The sun will rise. All can never be the same again but good  can come.

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