Money
Paying for treatment
This is where families are hurt most, and where the internet is least honest with them.
So here is what we actually know, what we do not, and what we are doing to find out.
What may actually help you
In roughly the order worth trying. None of these is a promise — they are the doors we know about, and we are checking each one.
Ayushman Bharat (PM-JAY)
If your family holds an Ayushman card, the scheme has package rates for embolisation of a brain AVM. Ask for the hospital’s PM-JAY coordinator — not the billing counter, which will often say no by reflex — and ask them to seek pre-authorisation.
Be aware that PM-JAY is means-tested. Many families reading this page will not have a card, and that is exactly why the rest of this list exists.
Your state health scheme
Most states run their own scheme alongside PM-JAY. In Tamil Nadu it is the Chief Minister’s Comprehensive Health Insurance Scheme. These can often be stacked with other help, and families frequently do not know they qualify.
The Chief Minister’s and Prime Minister’s Relief Funds
These do cover neurosurgery, and they are applied for through your District Collector. You will need the hospital’s estimate and the diagnosis in writing. It is slow, and it is worth starting early.
The hospital’s medical social worker
Most large hospitals hold a charity fund, and most families never ask. Ask. The person you want is usually called the medical social worker or the patient welfare officer.
Crowdfunding
Milaap, Ketto and ImpactGuru are the platforms Indian families use. They work best with an itemised hospital estimate and verified documents — and they take time to gather momentum, so start before you are desperate.
What we do not know yet
We are telling you this because a scheme that exists on paper and is refused at the counter is not help — it is a wasted week.
- Whether PM-JAY is actually paid out for this condition in practice. We are asking the hospitals directly whether they have ever had a VOGM embolisation pre-authorised, and whether it was paid or queried.
- What treatment actually costs in India. It has never been published. Nobody has the number. We intend to find it and print it.
- What it would take to get VOGM recognised as a rare disease. We have formally asked the Government of India how a condition gets added to that list, and whether this one has ever been considered.
When we have answers, we will publish them here — whatever they say.
If you have been through this
If a scheme was approved for you, or refused, you know something that is not written down anywhere in India. Please tell us. It will help the next family, and it is the only way this page ever becomes properly true.