ethanguillen's blog

On Tuesday, the National Institutes of Health refused to use government march-in rights to help improve access to Fabrazyme, the only treatment for the rare and life-threatening illness, Fabry disease.  Fabrazyme is wildly expensive and because of production problems, Genzyme has been rationing care.  Currently, newly diagnosed patients cannot receive treatment while current patients suffer due to reduced drug regimens.

UAEM Board President Rachel Kiddell-Monroe recently spoke at the University of British Columbia first annual Neglected Global Diseases symposium.  You can find out more about the symposium here.

Watch here talk below.

UAEM has joined with other Canadian civil society organizations to ask Parliament to pass CAMR reform.  On World AIDS Day members of parliament must remember the incredible need for treatment that is currently unmet.  In times of retracting budgets, CAMR reform can help provide affordable treatment WITH NO COST.  

The press release from the Canadian HIV/AIDS Legal Network is below as is the letter to Parliament.

For immediate release Également disponible en français

UAEM's dear friend, Sujal Parikh, passed away Tuesday of injuries sustained in a serious traffic accident in Uganda, where he was Fogarty International Clinical Research Scholar.  It is with a great deal of heartache that we grieve his untimely passing.  

On August 17 and 18, UAEM-Brazil celebrated its status as the first South American branch of UAEM by hosting its inaugural event at University of Sao Paulo (USP). The one-day conference was followed by a second day of strategizing on how to move UAEM forward in Brazil, beginning a deeper dialogue on North-South access to medicines issues.  Furthermore, UAEM-Brazil has brought a strong Southern perspective to UAEM and will continue to mold UAEM’s advocacy activities.

On February 23, UAEMers Sandeep Kishore, Gloria Tavera in conjunction with Peter Hotez, published an op-ed in the online journal PLoS Neglected Tropical Diseases on the importance of universities in advancing research on diseases that often have inadequate or no treatment at all.  The editorial is available from the open source journal here: http://www.plosntds.org/article/info%3Adoi%2F10.1371%2Fjournal.pntd.0000635