Medsin is a student network and registered charity tackling global and local health inequalities through education, advocacy and community action. They have a vision of ‘a fair and just world in which equity in health is a reality for all’ and believe that the students of today are critical to bringing about an equitable and healthy world of tomorrow.
Repesentatives from the local Medsin brabches from over 30 UK universities attended the Medsin UK Annual Conference on 15/16th of November 2014 in the School of Medicine at Newcastle upon Tyne University to learn ,discuss and develop actions on health inequity to work on
aHUSUK was invited to the Conference to take part in a workshop about access to ultra orphan drugs and the inequities that those with rare diseases can face. aHUSUK briefed the workshop members about the experience of patients in England to access the ultra orphan drug eculizumab and suggested areas for improvement which would be of interest to medical students including research , NHS , drug pricing and what patients can do.
Another invited guest talked about novel ways of funding research of “pooling” resource rather the conventional “push/pulling” ways which can result in neglect of areas such as rare diseases.
Workshop participants then asked questions and discussed the issues and afterwards a small Task Group for Ultra Orphan Drugs ( how often in matters rare does a small group begin something which becomes significant in time) developed an action list to develop an understanding and awareness of issues such as drug pricing and evaluation, novel models of medical research and bring about some change to improve equity of health.
aHUSUK recognises and welcomes the interest shown by young medical professionals in social issues of health as well as the opportunity to speak to them .
Furthermore some aHUSUK members have said how fortunate they were in their diagnosis that there should be a newly qualified junior doctor who had heard about aHUS in their training, and were able to offer it as option for explaining their patients condition and getting treatment sooner as a result. So who knows!