For the past nine years Global Action has been at the forefront of featuring the aHUS name change journey.
Currently proposals for name change are half baked and two tiered.
In recent weeks names like CHUS for aHUS have been used in medical articles. In one the death of aHUS was confirmed when the authors announced that their article was about something “formerly known as atypical hemolytic uremic syndrome”. Are reports of its death greatly exaggerated? WHO might have something to say.
Nearly 50% of clinical participants in the name change project saw patients as a barrier to its implementation because they are all reluctant to change.
100% of patients ,if they had they say, would be reluctant to change if was not an improvement and just unjustified change. Zero percent of patients would be reluctant to change if it was for improvement.
The actual barrier to change at the moment is having funds to implement it . No one put that in their risk assessment nearly two years ago.
An aHUS patient has just had an article published in an online magazine for medical professionals, STATNEWS.
It is about what its like from a patients perspective to see their diagnosis being changed as they are recovering from an onset of aHUS.
The case about those who have ignored patients in all this process is eloquently made.
Here is the LINK to follow to read the article for free: STATNEWS
Article No. 728
Use this QR code to get an article link.
