The Government of India has included atypical HUS in its National Policy for Rare Diseases (NPRD). Under this policy, several Centers of Excellence (CoEs) across the country were chosen to handle applications from doctors with patients suffering from these rare diseases for funding treatment to an extent of Rs. 50 lakhs.
Since Soliris became available in India, doctors have been applying for funds allocated for treating aHUS with this drug. Sadly, these applications are not being processed quickly. Atypical HUS is a very serious disease. Because of these delays, patients are either dying or developing kidney failure.
This is unfortunate because the government has provided funds for treating this disease and these funds are not being made available to deserving patients. Due to bureaucratic delays at the CoEs, patients are not getting the treatment they need. This is an appeal to all CoEs to process funding applications for atypical HUS quickly. Delays can endanger patients' lives and lead to death or kidney failure requiring dialysis.
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