aHUS and COVID-19

The reaction to aHUS Global Action’s two blogs about aHUS and COVID-19 has been truly remarkable. It  demonstrated , superbly ,the interest by the aHUS community in aHUS specific information.

aHUS Global Action cannot give medical advice.

However it has been brought to our attention that two aHUS specific sources have appeared in the public domain

Firstly an e-mail exchange involving Dr Christoph Licht of Canada reproduced below

Jeff:

Is there anything I should tell our community? On Eculizumab or off?

Hoping to get some info that will help our community be safer but also to help relieve some of the anxiety.

Dr. Licht:

To the best of my knowledge, there are no specific (i.e. functional) links between complement inhibition via eculizumab and a viral illness like COVID-19. All recommendations of how to behave (social distancing, hand hygiene, healthy life style etc.) and how to handle the situation apply to aHUS patients (with and without treatment) as well. Some aHUS patients having received pneumococcal vaccination might even be in a good place as this vaccination is recommended by some countries (like Germany) for seniors.

Jeff:

Are you indicating that Eculizumab does NOT weaken the ability to fight this virus (as it does meningitis)?

And I guess those not on Eculizumab need to be alert if they get the virus as it could be a possible trigger.

Dr. Licht: (answers to my 2 prior questions)

Are you indicating that Eculizumab does NOT weaken the ability to fight this virus (as it does meningitis)? –

(answer) “Yes.”

And I guess those not on Eculizumab need to be alert if they get the virus as it could be a possible trigger. – 

(answer) “Theoretically possible, but the risk of SARS-CoV2 triggering an aHUS episode is so far hypothetical (i.e., we have no data, yet).”

aHUS Global Action comment:

This information  ,although purportedly on behalf of the aHUS alliance, came to aHUS Global Action as an interested viewer.

So those affected by aHUS are as likely to get an infection as anyone else if someone  comes into contact with the virus. From an infected person coughing and sneezing on them, or from a surface that the  virus has landed on. That makes sense.

Delaying infection is the best action. That makes sense too.

COVID-19 can be a triggering hit in those genetically susceptible to aHUS, but who have  not yet onset with aHUS . It will be extremely rare ,as Dr Licht asserts, if it does happen. It is unlikely there will be research publications based on data for this issue for a while yet, maybe some case reports might appear on Twitter in time.

Some mention is made of the senior “at risk” group benefitting from a ” pneumonia ” vaccination.

There are more parts to the immune system other than the innate immune system that the alternative pathway of Complement is a part of.The body’s  fight against the virus will rest with the Adaptive Immune system, which hopefully create antibodies specific to COVID-19 , eculizumab does not prevent that happening.

In time the Acquired immune system, whether by those previously affected, or from  a vaccination against COVID-19 for all, will be added weapons to the body’s amoury.

What this list is still lacking is information about the immunosuppressed aHUS transplant cohort and what happens in the course of a COVID-19 infection and what makes infection become severe.

A second advisory notice came to aHUS Global Action attention on Twitter. It comes from the National Renal Complement Treatment Centre in UK.  It is reproduced below:

COVID-19 and aHUS/Eculizumab

Key points:

  • Patients with aHUS receiving eculizumab should continue to receive their usual dose of eculizumab during the current COVID-19 pandemic
  • Patients with aHUS receiving eculizumab may be at increased risk of severe illness from coronavirus (COVID-19) and we are advising them to be particularly stringent in following social  distancing measures (please click here for the government link).
  • Patients on eculizumab remain at risk of meningococcal sepsis and should continue on their prophylactic antibiotics and seek medical advice (presenting with your meningococcal risk card) if they believe they have symptoms suggestive of meningococcal sepsis 
  • Patients in the Stopping Eculizumab Treatment Safely (SETSaHUS) should continue with standard monitoring as described in the SETSaHUS information pack
  • If individuals have previously been told by a medical professional that they are at risk of developing aHUS, standard advice about seeking medical advice with their “aHUS at-risk” card applies if they are unwell and think that they have symptoms of aHUS

COVID-19

COVID-19 is a new illness that can affect your lungs and airways. It’s caused by a virus called coronavirus. Washing hands for 20 seconds is central to the expanded public awareness campaign to prevent and slow the spread of coronavirus (COVID-19).

The symptoms of coronavirus are:

  • a cough
  • high temperature
  • shortness of breath

These symptoms do not necessarily mean you have the illness. The symptoms are similar to other illnesses that are much more common, such as cold and flu

How to avoid catching or spreading coronavirus

  • wash your hands with soap and water often – do this for at least 20 seconds
  • always wash your hands when you get home or into work
  • use hand sanitiser gel if soap and water are not available
  • cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze
  • put used tissues in the bin straight away and wash your hands afterwards
  • try to avoid close contact with people who are unwell

Don’t

  • touch your eyes, nose or mouth if your hands are not clean

Guidance for all people about possible infection with COVID-19, including when you should seek further medical advice is summarised.

https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public

Comment by aHUS Global Action

Apart from the generic advice about preventing infection, this message makes the point about a chance of  a severe infection rather than just being infected.

It covers the point about  the withdrawal from eculizumab treatment patients and their self monitoring. They have a direct pathway to a return to eculizumab if needed.

Sepsis is one of the complications that makes the  COVID -19 infection more serious.

Finally those genetically susceptible, whether tested or not, need to be vigilant. Family members of aHUS patients not tested may need telling by aHUS patients.

There is no specific mention of those with aHUS transplants supported with eculizumab as well as being immunosuppressed.

As far as is known, there has been no change in Alexion’s  prescription guidelines for eculizumab or ravulizumab. And it is assumed that there are sustainable supplies of ecu/ravu and accessories for infusion for the first wave of the COVID-19 pandemic. There will be other waves to come in the future.

There may be other advice out there, but, unless it is brought to aHUS Global Action’s attention, we cannot comment.

But at the end of the day it will be the dialogue between the patients and their treating medic that will matter the most. Hopefully messages like the above will help that dialogue along.