The National Programme for Rare Diseases in India has made drugs like Eculizumab available for patients with Atypical Hemolytic Uremic Syndrome. Centers of Excellence (CoEs) have been chosen to handle applications from doctors who need Eculizumab for their patients.
However, these centers are taking a long time to process applications and provide the drug to patients. Atypical HUS is a serious disease that can quickly lead to death or end-stage kidney disease, so delays are dangerous.
To solve this problem, each center of excellence could keep a few vials of Eculizumab on hand for emergencies. When a patient shows signs of thrombotic microangiopathy, hemolytic anemia, and renal insufficiency - the triad classically associated with aHUS, they can be given the drug right away. This can help prevent kidney failure and stop the disease from getting worse.
For this plan to work, the government and CoEs need to cooperate and ensure that enough vials are available at each center. This way, patients can receive immediate treatment while waiting for further tests to confirm the diagnosis.
The Atypical HUS India Foundation urges the government and CoEs to work together to make this happen.
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