In India, aHUS is at the cusp of a radical new change in the way the disease is managed. Like you are probably aware, two drugs are under clinical trials in the country and the only drug currently approved elsewhere - Eculizumab - is likely to begin being sold some time next year.
Until now, things were very different. There was little hope of getting any drugs in India. Hopefully, the coming months will see the beginning of a new dawn for aHUS patients in the country.
This is a time when we patients need to do everything we can to shape the course of drug availability and pricing so that we ensure these events do not remain mere headlines and plans on paper. Of what use is a drug trial if patients do not get access to it after approval? Of what use is drug approval if patients are unable to get it due to the lack of support from the government or pricing being within our reach?
Until now, the aHUS India Foundation did not have any volunteers. This may not be sustainable. We definitely need more hands. If a few of us come forward and pledge our support, we can work together to achieve our goals - treatment for all!
You do not need to commit a whole lot of time. What is needed is a minimal commitment. And everything is completely voluntary.
So, if you would like to be part of this, please send an email to ahusindia@gmail.com and we can discuss the way forward.