Immunocompromisation is a hall mark of aHUS. For those who are predisposed to it and for those who have had it and are in treatment. It is just a matter of the degree of compromise.
Look at the table below.
The degree of compromise is defined by whether someone is on or not on a Complement Inhibitor or has or has not needed a transplant.
Those predisposed to uncontrolled Complement if triggered have a potential for being immunocompromised. At the other end of the scale are those who are “extremely” compromised because of both complement inhibition and immunosuppressant drug treatment.
Those aHUS transplant patients not needing Complement inhibitors but who are on immunosuppressant treatment are very compromised just like any transplant patients.
aHUS patients who got complement inhibitor treatment before end stage kidney failure have a very compromised innate immune system too, particularly in regard to meningococcal infection where vigilance and mitigations are needed.
aHUS – degrees of immunocompromisation of patients and predisposed
| No Complement |
aHUS people have known this for years, so what is new?
COVID-19 happened and it exposed the immunocompromised community to much greater risk of serious illness than the non compromised community. This higher risk applies to the aHUS community.
COVID-19 also has been found to be a trigger of aHUS and setting off the disease in the predisposed whose Complement control pathways are compromised.
Now the pandemic has been declared over by most governments, most people can get back to normal. But COVID still exists and remains a risk to immunocompromised patients. It is an additional risk alongside other risky infections that these patients face, very much so in the case of aHUS.
And what happened during the pandemic cannot be forgotten. Patient centricity went to a new level in terms of trialing and approving treatments and vaccines.
Now the non compromised world has moved on, the compromised are left behind , resigned and disillusioned and having to isolate themselves from the world and a social life.
That is why a new advocacy network is being created from organisations calling for action for the immunocompromised. The first time this has been done across the many disease communities affected by immunocompromisation.
Starting with having a “model definition” for the “immunocompromised” ( it was difficult creating the table above with correct wording) the following actions are called for
- a comprehensive model definition of who is considered immunocompromised.
- researchers to determine the number of immunocompromised people.
- Governments to invest in research to improve COVID-19 vaccines and medicines for the immunocompromise
- improved access to COVID-19 vaccines and medications for the immunocompromised.
- policymakers to define clear strategies to protect the i munosupressed
- recognition of the importance of non pharmaceutical intervention in preventing COVID-19 infections
- Governments to publicly reporting true levels of COVID-19 infections
- Patient communities , healthcare providers, and health authorities to engage more in patient education and health literacy
- recognition of the psychosocial needs of the immunocompromised community
- stronger coalition across the immunocompromised community
More information of this fledgling movement which has been created in the past few weeks including full details of its call to action can be read on their website at this LINK. Note it is supported by Astra Zeneca.
So this is a new world movement for many hundreds of millions of people with disparate conditions ,both rare and common, including the whole of the aHUS community. All working together to ensure that they are not forgotten in a world returning to normality but which remains a challenge to their lives.
But first the term “immunocompromisation” is in need a model definition so that the extent and scale of its existence is fully understood and those included can stand side by side to make the other calls a reality.
Article No. 608