Access to treatment for those in the developing world is a major rare disease issue,
The alliance began the year by publishing the results of an in depth investigation by the alliance’s Linda Burke into the current state of play for complement therapies that have, or potentially have, an aHUS application. The paper is in the Info Centre and can be seen by clicking here
In her research Linda also examined current access to treatment issues revealed by the alliance’s 2016 Global Poll. Whilst the USA and Europe benefit from largely universal access to a complement inhibitor ,the same is not true in the developing world where access is negligible or not at all.
Kamal D Shah brought this challenging issue for aHUS patients in the developing world to the attention of the United Nations NGO Committee for Rare Diseases. ( see video of his presentation at their first committee meeting by clicking here).
The alliance has heard that Arvind Bagga, Professor of Pediatrics at the All India Institute of Medical Sciences, New Dehli, is organising a consensus conference in India for clinicians in the developing world to examine and agree a way forward for aHUS patient treatment in countries like India. An opportunity for Clinicians , Pharma and patients to meet and talk about this challenge.
Prof. Bagga is known around the world for his aHUS research; and participated in the KDIGO aHUS Controversy Conference in Barcelona in 2015.He is perhaps best known by aHUS patients for his work on treating Anti factor H antibody mediated aHUS without access to eculizumab. An example of his work, on this occasion with an equally reknowned researcher from France , Marie-Agnes Dragon Durey, can be read by clicking here.
The alliance hopes that consensus conferences like this one in the developing world will bring treatment for aHUS patients with an unmet need.
*the featured image is of Kamal D Shah who is the alliance’s lead for access to treatment in the developing world
