aHUS Awareness Day: September 24, 2016!

The second International aHUS Awareness Day is September 24, 2016. The aHUS Alliance, an international group of atypical HUS patient organizations, is dedicating this day to the issues aHUS patients are facing and sharing information and insights into Atypical Hemolytic Uremic Syndrome. Read the PR Newswire: http://ow.ly/C5wY303G7ix .

Atypical Hemolytic Uremic Syndrome is an ultra-rare, life-threatening, disease characterized by the systemic formation of blood clots (TMAs) throughout the body, potentially causing damage to the kidneys and other organs, with serious complications including stroke, cardiac issues, and kidney failure. It is often associated with an uncontrolled activation of the complement system, part of the body’s protective immune system. We estimate there are approximately 100 patients in Canada.

The theme for 2016 aHUS Awareness Day is ‘Rising above aHUS’, symbolized by a red balloon. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis, access to treatment and health care options, shared data and information among global aHUS researchers, increased physician education, and advancement in aHUS orphan drug therapies. As patients share personal stories about the challenges of aHUS, the aHUS Alliance encourages medical and research teams, pharma, health care professionals, geneticists and policy makers to share how they or their organization’s innovations are ‘Rising above aHUS’ to improve patient outcomes.

A problem faced by Canadian aHUS patients is the lack of access to proper treatment. More than three years have passed since Health Canada approved eculizumab in 2013 for the treatment of aHUS, yet eculizumab is not accessible to most aHUS patients in Canada. aHUS patients are frustrated and continue to suffer unnecessarily. Most countries have a national pharma care plan. Canada is unique since each province, having their own Health Ministry, makes independent decisions which creates inequity across the country. The high price of the drug and alleged lack of clinical evidence has left most patients without treatment unless they have private health insurance.

In August of 2015, aHUS Canada was pleased to hear that our provincial governments finally began negotiations with eculizumab’s manufacturer, Alexion, and were hopeful that permanent funding criteria would be created for all of Canada. Unfortunately earlier this year we got the very disappointing news that the provinces had ended negotiations with Alexion. We urge the provincial governments and Alexion to return to the table and resume negotiations and come to a funding agreement so that patients will finally receive the proper treatment as recommended by their physicians. 

The Ministry of Health and Long-term Care in Ontario announced that it would continue to provide funding of eculizumab for aHUS patients who meet their updated “defined clinical criteria” Soliris aHUS Ontario EAP Criteria March 2016. Although grateful for the continued funding, patients are concerned and frustrated about the limitations of access the Health Ministry has implemented. The criteria does not take into consideration the unique situation each aHUS patient has with the variety of genetic mutations. Patients should be treated in a timely matter and according to their physician’s recommendations. Treatment duration should be decided by the treating physician and based on scientific evidence. Each patient should be treated according to their individual needs. So far, Quebec and Ontario are the only 2 provinces that currently have some funding in place for aHUS patients. We urge all the provinces and territories of Canada to follow clinicians advice and scientific evidence and provide equitable treatment for aHUS patients so that no patient will be left behind, including those on dialysis in need of transplant.

aHUS Canada and the aHUS Alliance invite everyone in the aHUS community to join together. Contact us, make your voices heard, and share your story about how aHUS has affected you. Together we can rise above aHUS.

aHUS Canada is a not-for-profit organization. Our mission is to support patients and families living with Atypical Hemolytic Uremic Syndrome. In addition to providing support to patients and caregivers, aHUS Canada strives to:

  • Connect those affected by the condition to establish a Canadian aHUS community

  • Build public awareness and understanding of this very rare and potentially fatal disease

  • Advocate for the best possible care and treatment for patients

Learn more about aHUS Canada at: http://www.ahuscanada.org/

Contact aHUS Canada: info@ahuscanada.org

Follow us on Facebook: https://www.facebook.com/ahus.canada

Follow us on Twitter: https://twitter.com/ahuscanada

@aHUSCanada   #aHUSday  #aHUS24Sept   #SHUa24Sept

aHUS Awareness Day –Information & Resources

2016 Awareness Day, aHUS Alliance PR Newswire press release: http://ow.ly/lGoQ303xaXW

aHUS Day Images: http://ow.ly/Lubn303G91x

aHUS Info Center – Main http://ow.ly/gCX4303G9au

aHUS Visual Arts Project (entries due by 11 Sept): http://ow.ly/Y4cq303G9lw

Related Links:

News & Views: aHUS Alliance BLOGS: http://ow.ly/TWqS303G9H5

2016 aHUS Global Poll OVERVIEW: http://ow.ly/gSj8303GcdH

2016 aHUS Global Poll, RESULTS & Graphs: http://ow.ly/1DA7303FoJx

RareConnect aHUS Poll Webinar: http://ow.ly/ACiN303GajE

2016 aHUS Fact Sheets (short and full version):
aHUS Key Facts & Information: http://ow.ly/dttf304bJGZ
aHUS Facts- a Brief Look: http://ow.ly/UetJ304bKcS

Learn more about the aHUS Alliance at: http://www.ahusallianceaction.org

Contact the aHUS Alliance:  info@aHUSallianceAction.org

Follow the aHUS Alliance on TWITTER : @aHUSallianceAct and @aHUS24Sept

Hashtags: #aHUSday   #aHUS24Sept   #SHUa24Sept   #aHUSaware