Today marks the first International aHUS Awareness Day. The aHUS Alliance, a confederation of 14 nations with atypical HUS patient organizations, is dedicating this day to sharing information and insights into an extremely rare, life-threatening, disease known as Atypical Hemolytic Uremic Syndrome.
Atypical Hemolytic Uremic Syndrome is an ultra-rare disease characterized by the systemic formation of blood clots (TMAs) throughout the body, potentially causing damage to the kidneys and other organs, with complications that may include serious or fatal events 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 less than 100 patients in Canada.
The theme for aHUS Awareness Day is ‘Communication’. There are many common concerns that affect aHUS patients regardless of nation, culture, or language such as: the need for quick and accurate diagnosis and healthcare options, shared data and information among aHUS researchers worldwide, and increased physician education about atypical HUS. Linda Burke, an American representative with the aHUS Alliance, says that, “Issues facing rare disease patients affect not only the individual with the disease, but also include the social, financial and societal impact among family members, the workplace, the healthcare system, and many other areas.”
At the core of patient treatment, caregiver concerns, medical team coordination, and disease research is communication of information and issues. Len Woodward, a UK representative of the aHUS Alliance, said that “Our goal for international aHUS Awareness Day was to provide families affected by aHUS and patient organizations to have an opportunity to join together and to shine a spotlight on aHUS around the world. We encourage medical and research teams, pharma, healthcare professionals, geneticists and policy makers to communicate their own message about aHUS issues and their team’s commitment to improved patient outcomes.”
A problem faced by aHUS patients is the lack of access to proper treatment. More than two years have passed since Health Canada approved eculizumab for the treatment of aHUS and yet eculizumab is not accessible to aHUS patients in Canada except in Quebec and to a small percentage of Ontario patients through an interim funding agreement.
Earlier this year, the Ministry of Health and Long-term Care in Ontario announced that it would provide interim funding for eculizumab for aHUS patients who meet “defined clinical criteria.” Vice-Chair of aHUS Canada, Michael Eygenraam, noted that, “While a long-term funding solution is our primary goal in Ontario, we are disappointed that similar progress has not been made in other provinces across Canada.”
Elsewhere, the UK’s National Institute for Health and Care Excellence (NICE) has determined eculizumab to be an effective treatment for aHUS patients and its final guidance to the NHS was issued, recommending eculizumab for funding for all patients in England living with aHUS. “We commend NICE and the NHS for acknowledging the devastating impact of aHUS and for putting the needs of patients first,” said Eygenraam.
September 24, 2015 was selected as the inaugural date for the first aHUS Awareness Day because during this same week, 60 years ago, the term Haemolytic Uraemic Syndrome first appeared in medical literature. HUS was given its name by Conrad von Gasser, when he and his research team described in an article for a Swiss clinical publication the illness they had been studying which caused blood clotting, anemia and kidney failure.
Today, the aHUS Alliance and aHUS Canada invites all stakeholders in the aHUS community to join together. Tweet us and/or Facebook us, make your voices heard, and share your story about how aHUS has affected you. Alone we are rare, together we are strong.
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
Follow us on Facebook: https://www.facebook.com/ahus.canada
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