And how long, on average, do 5 cartridges last? I read somewhere that the average gel cost per year was close to 120K, which no one can afford.

I have a lot more to share based on my experience with finishing 60 week Stage IV trial with Abbvie, but for now will just add what I know of cost. I am not sure where the six figure costs are coming from? Here is what I know thus far:

1. It is Medicare approved.
2. You rent to own the pump.
3. Your receive monthly supply of cassettes, daily maintenance supplies, and batteries.
4. There is a high level of customer support and care with a pharmacist available 24/7.
5. You cannot OD on it or self-medicate with abandon. The pump is programmed by or in consult with your neuro after an observed titration period of several hours over the course of 2-3 days. You have some control over your dosing as you should but there are limits and lockout periods.
6. It is costly but depends on your insurance coverage and deductibles, so in the end the cost varies for each person. For example, I would have had to pay nearly $7,000 annually out of pocket but then everything would have been covered 100% once I reached my annual out of pocket expenses.

Most importantly, I was connected to three different grant sources to cover treatment costs and received a very generous grant that covers everything up to $16,000. This would have included surgery for JPEG tube which I already had in place for trial. This is an annual amount and is even retroactive by three months. In essence, I seem to be fully covered. Not sure about how renewable this is but not going to worry about it just yet.

Just wanted to clarify that this is not financially out of reach for everyone and although yes hardly groundbreaking therapy; it is still levodopa after all, there are many potential benefits and far fewer risks than brain surgery (let's not forget that you are still on pills with DBS too). Important thing is we have an option or alternative now that is financially viable and in my opinion far less risky than any other invasive treatment we now have. I, in fact, have lowered my overall med intake by nearly 25% and am only on one medication with far fewer side effects. We are all different though, but it is worth considering I think.

Hope this helps for some.

-Laura