KUALA LUMPUR, Sept 17 (Bernama) -- AstraZeneca Malaysia and the Malaysian Society of Nephrology (MSN) today signed a two-year Memorandum of Understanding (MoU), establishing a framework to strengthen disease awareness and healthcare professional education, while supporting timely recognition, appropriate referral, and coordinated multidisciplinary care.
It is a collaboration to explore non-promotional, patient-centred initiatives on aHUS awareness and care pathways.
According to MSN president Dr Rosnawati Yahya, aHUS is a medical emergency that frequently affects the kidneys. Delayed recognition and treatment may result in irreversible kidney damage, kidney failure and the need for dialysis.”
“aHUS can be difficult to diagnose because it may present in different ways and across different healthcare settings. Through this collaboration, we aim to strengthen healthcare professional education, encourage timely referral and improve multidisciplinary care for patients with aHUS,” she told Bernama after the MoU signing ceremony here today.
She said the disease could be particularly challenging to identify as its symptoms could present in various healthcare settings, including emergency departments, medical wards and obstetric wards, with pregnancy among its potential triggers.
“Patients may present with kidney injury, neurological symptoms or gastrointestinal symptoms. The wide range of presentations can make early recognition challenging,” she added.
Dr Rosnawati, a nephrologist with more than 30 years of experience, said the collaboration would enable MSN to provide clinical and educational input to support frontline healthcare professionals in recognising aHUS early and ensuring patients were referred for multidisciplinary specialist care.
Although aHUS is considered rare, awareness remains important due to its potentially serious consequences if left unrecognised. Globally, an estimated one to two new cases of aHUS are reported per million people each year, while approximately two to nine people per million population are living with the condition.
“When frontline healthcare professionals recognise the warning signs and initiate appropriate investigations, patients can be referred and assessed more quickly. We want to avoid delays that may lead to severe organ damage or the need for intensive treatment,” Dr Rosnawati said.
Under the MoU, AstraZeneca Malaysia and MSN will explore initiatives focused on healthcare professional education, disease awareness, timely identification, appropriate referral and multidisciplinary care coordination.
AstraZeneca Malaysia Country President Dr Svetlana Yanchuk said rare diseases often place a significant burden on patients, their families and healthcare systems, yet they often receive limited attention due to their low prevalence.
She said the collaboration aimed to support practical, evidence-based initiatives to improve awareness and understanding of aHUS.
“Given the risk of severe kidney and other organ complications associated with aHUS, increasing awareness and promoting timely recognition may help ensure that patients are referred to the appropriate specialists, assessed promptly, and receive the care they need,” she added in a statement.
Kidney-related complications, including end-stage renal disease (ESRD) requiring dialysis, can contribute to broader healthcare-system challenges. Public-sector expenditure on ESRD has grown by 94% within a span of 7 years, from RM572 million in 2010 to RM1.12 billion in 2016. The direct and indirect costs associated with dialysis are projected to rise from approximately RM1.5 billion to RM4 billion by 2040.
For people affected by aHUS, early identification, appropriate referral and prompt clinical assessment are important to support appropriate disease management and may help preserve kidney function and reduce the risk of progression to ESRD requiring dialysis.
Reducing this risk may also help lessen the wider personal, social and economic impact, particularly for children and people of working age.
Professor of Medicine and Senior Consultant Nephrologist Professor Dr Lim Soo Kun said aHUS is a complex condition that affects not only the kidneys but also the blood, requiring multidisciplinary management involving nephrologists and haematologists.
He said frontline doctors also needed to be aware of the condition as patients could present with different symptoms and at various healthcare settings, including health clinics and district hospitals.
“If a patient presents with different symptoms that could be suggestive of aHUS, basic investigations can be carried out, and the patient can be referred to a bigger hospital for further assessment. However, if the condition is not picked up at the front line, patients may miss the opportunity for timely specialist assessment and appropriate referral,” he said.
Meanwhile, Mohd Nizrul, whose wife and daughter were diagnosed with aHUS, said greater awareness is important as many patients and families remained unfamiliar with the disease.
aHUS is a rare, serious disease caused by dysregulation of the complement system. It can lead to thrombotic microangiopathy and damage the kidneys and other organs.
The collaboration was announced ahead of aHUS Awareness Day on Sept 24 to highlight the importance of timely recognition, specialist assessment and coordinated care.
-- BERNAMA