Atypical Hemolytic-Uremic Syndrome (aHUS) is an ultra-rare and life-threatening disease that can be acquired at any age. This condition causes blood clots to form in small vessels and block blood flow to the body’s major organs, leading to failure of the kidneys, heart and brain.
The Story Behind the Hashtag
Currently, there are 60 to 70 children and adults in Australia waiting to receive treatment for this deadly disease. And while the only treatment available and clinically proven to prevent premature death and organ damage is already funded in the US, Japan and several European countries, the Australian government has not yet made the drug available to patients through its federal Life Saving Drugs Program (LSDP). LSDP helps to cover the costs of drugs that treat rare diseases, and without funding through this program the drug Soliris would be unaffordable to all aHUS patients. The bottom line? If the Australian Federal Minister does not fund Soliris through the LSPD, aHUS patients will not have the life-saving drugs they need.
How You Can Help
The aHUS Patient Support Group
Australia’s (aSPGA’s) “Plea for Life” campaign calls on patients, their families and advocates to post photos on social media of the hashtag #saveaHUSlives. The goal of the campaign is to capture the Australian government’s attention and ultimately get government funding for this drug.
GLOBALHealthPR partners, including Spectrum, are proud to lend their efforts to this important campaign. Join us in the conversation and swell of support, and snap your own photo to #saveaHUSlives!
Note: This article originally appeared in the Spectrum blog on 31 July, 2014.