On the 10th anniversary of international aHUS awareness day it is timely to raise awareness that the old term aHUS is on its last legs and is to be replaced.
About three years ago a group of clinicians facilitated by the US National Kidney Federation began a discussion about the name aHUS and whether it should be changed into something better and what that better name might be.
News of this project was kept from patients because this group chose not to involve us in the discussions about us. It took two years for that group to reach a conclusion and another year to announce what had been concluded.
So they have done the talk and now for the walk!
As soon as Global Action became aware of the announcement ( an article in the Kidney International journal) we let the aHUS community know.
It should have not been too surprising that the name aHUS is to be replaced by several “ something TMAs” . Although in a recent survey around 60% of the aHUS Community reported they were not aware. So there is quite a communication deficit. And that is just in the part of the global aHUS community that is within the reach of any aHUS patient advocacy..
The vast majority of the of the 25,000 or so complement TMA /aHUS patient community are not within reach. Nor will the 4000 or so new aHUS/ “CM- TMA patients onsetting each year be, probably.
Or maybe they are already getting mixed messages even if a lot of them may not live long enough to get a diagnosis.
They are for most part not aware of the outreach to them , only about 40% of the world’s population has access to the internet. Or they may just have no interest in what is being said about them. For most part neither are their doctors aware.
One day all aHUS patients around the world will be told that they now have a “something TMA” and no longer have an aHUS. And more importantly what it means for them personally. That is the end game.
Between now and then who knows what is going to happen. Least of all when that conversion might be.
In fact is there any need for any other communication between those who are driving this movement and those patients already aware?
The report on the new nomenclature, apart from setting a structure of names, also says those names will be in a continuous state of potential change until they can be decided by the science.
Those clinicians involved were not in 100% agreement about most of the key issues impacting on changing a disease name. other than it needs changing.
When Global Action brought the attention of the report to people on social media there were a whole host of issues raised by those at the end of the line as far as having any say is concerned.
Here is a summary of those patient and carers responses.
– any change would be a worry and this one is not straight forward;
– would there be a minimum number of cases of a particular TMA to justify a separate category or could an individual be a unique TMA;
– concern expressed about the breaking up and a division of the aHUS community;
– a need to be thorough in explaining the various categories of TMA to achieve patient understanding;
– patients appear to have not been given enough importance in the change process of change so far;
– there are patients who have been denied genetic testing by their doctors as being not needed or it is unaffordable so will there be a “not tested complement mediated TMA”? Or will a genetic test be required for accurate categorisation and be a cost burden on patients if insurance refuses to pay?
-patients whose first language was not English found the proposals difficult to understand , what communication will be available to them?
– some patients said they agree to a TMA name on condition it will save more lives;
– some see new terminology as being problematic for insurance and reimbursement even more so than it is currently giving insurance companies the chance to avoid payment;
-some thought that their doctors will struggle to understand it all as frequently they are not confident in their doctor’s current understanding of aHUS;
– will the recategorised TMAs cause more patients to be harmed by inappropriate discontinuation of treatment decisions.
Quite valuable initial feedback from a patient perspective and which Global Action sent to the leaders of the disease renaming project.
There was a response, not to the individual concerns expressed above, but about how the list illustrates the difficulty in achieving a transition that will satisfy all players and how difficult it is to know how this whole thing will develop since there are so many stakeholders involved.
Ideas were asked for on what can be done help patient understanding.
Well three years on there is some willingness to engage but we just have to say how.
What would our response be to that and how should it be communicated?
Doing it in a way that avoids any carts being put before any horses.
Not sure if there any clues in the published report about how this is going to play out. Is there going to be big bang transition or a seeping inundation of the new and replacement of the old?
For example take this statement from an article about aHUS published a year ago:
“ …characterize primary atypical hemolytic uremic syndrome (hereafter referred to as complement-mediated [C-]thrombotic microangiopathy [TMA] CTMA).“
Will the next steps not be known until another article is published in Kidney International in a few years? To be followed by further years when implementation finally begins , preceded by a series of Kidney International articles addressing each stakeholder. Who knows?
When is that conversation is ever going to place between the aHUS patient and their doctor to throw our the old and bring in the new.
The inability to be able to answer patients’ questions right now suggest that it is not going to be quite yet!
Note : if anyone reading this article would like to add to the concerns raised by previous patients please use the comments box below or join in on any social media discussion on the topic.
Article No 690
