Delays in processing funding applications by CoEs under NPRD

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.

Making available vials of Eculizumab to be used in emergencies

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.