How you can get access to Soliris (Eculizumab) in India: Government Funding Route

The Government of India has a National Program for Rare Diseases (NPRD) that funds, up to a certain extent, treatment for rare diseases including aHUS. With Soliris (drug name: Eculizumab) now becoming available in India through the company directly, supply should be more reliable. Until now, the drug was available through importers who imported such drugs through unofficial, non-company based channels.

For those who can afford to pay for the drug out-of-pocket, please refer to this post for more details.

This post will outline the steps to take to apply for assistance in procuring the drug through the Government's NPRD.

• Identify the closest Centre of Excellence (CoE) to you. Here is a complete list of CoEs in India
• Visit the CoE campus and meet a senior doctor in the nephrologiy department. You may need to take an appointment by phone or in-person. At the time of enrolment, you will be given a Hospital ID. Keep this handy
• Carry the following with you when you meet the nephrologist:
• ID proof (Aadhaar / PAN / Voter ID) - original and 2 copies - if patient is a minor, also carry ID proof of parent / guardian
• 2 Passport size photographs
• Your medical file that has past prescriptions
• Any hospitalisation discharge summaries
• Current Prescription from the nephrologist treating you
• Recent lab reports - CBP, LDH, Kidney function tests, Urine Analysis etc.
• Genetic Test Reports, if available
• The nephrologist may require some other tests to be done or additional documents may need to be provided. Arrange these as requested by them
• Once all documents are provided, the nephrologist (or their assistant / adminstrator) will enter the details into the NPRD portal. this will include the number of vials, duration of treatment etc. An enrollment number will be generated and given to you. Keep this number safely
• There is a Rare Disease Committee that has been constituted at each CoE. This committee meets periodically and even on emergency basis to review all applications submitted and decides the merits of each application. The committee meets once every 1-3 months (depending on the hospital and the number of cases to review; they may also meet on emergency basis if needed). The committe decides to approve / reject / recomend to modify the application
• Once a decision has been reached, you will be notified of the decision
• Keep in touch with the nephrologist you met about this and any other queries you may have. Sometimes, the nephrologist might put you in touch with another coordinator who would be able to answer any queries you may have
• The committee may request additional documentation including some investigations. Make sure you get these in a timely manner
• Also, if you undergo any doctor consults / investigations after the initial form is submitted, make sure you give this to the doctor / assistant in the CoE to submit in the portal
• Note that approval by the committee might take up to a few months
• Once the application is approved, then the CoE will raise the funding requisition with the government for which you may be asked to sign some consent forms
• Once the funding request is approved, the CoE will procure the drug from the company through their pharmacy
• Once the drug reaches the pharmacy, speak to the nephrologist to discuss the next steps

Please be aware that this is a relatively new process for the CoEs. Even among the CoEs, there are some that are better equipped than others.  Remember, you need to advocate for yourself or your loved one. You will need to keep following up with the relevant stakeholders. Do not expect things to be handed to you on a platter. You will need to push people to help you. Do drop us a line with your experiences and we will do the best we can to help. All the best!