What price do you expect for a cure?

[lgelb]

The billed charges shown are not retail. They have already been negotiated with the payor and are on a price list. That is why the "discount" [adjustment] shown is so small -- it is like a rounding error.

The list price or Chargemaster off which the insurance contract prices are negotiated (which is typically 200-400% of actual acquisition costs) will never be on your bill. There are currently new federal regulations that require "revealing" it but there is really no point since it is only used as a starting point. It is like sticker price.

 

[Nikki J]

I see the sticker price and the negotiated price and they are wildly different. as I mentioned one test was 11 times the price that was originally billed. I don’t save them once things are processed. I once got billed sticker price for an office visit due to a series of insurance and administrative mixups but they fixed it when shown the eob

 

[lgelb]

I know what you're saying, but the "rack rate" shown on bills is not the same as the Chargemaster. But it's true that the negotiated discount even on that is huge.

The good news is that as technology advances, the cost of many treatments, however stated, is coming down.

 

[jethro]

to be honest, i'm focused on arimoclomol, my last chance. eu citizens have problem: time to put new drug into system, hence we need to buy with pocket money literallly-everything. dark ages... chemputer, generics, everything is possible to survey.

 

[lgelb]

Think about all the strategies with the equivalent of Phase IV evidence behind them: feeding tube if needed with non corn-syrup-based nutrition, BiPAP if needed, maintaining weight, healthy diet, appropriate supplementation, adequate sleep, avoiding falls, safe transfers, interaction with something/someone who makes you happy...I don't think arimoclomol is your last chance to extend your life.

Best,
Laurie

 

[jethro]

laurie, to live, not to survive. i am the one who will say: game is over.

 

[lgelb]

No doubt! And I mean quality as well as quantity. I would not say "extend without meaning," ever.

 

[KevinM]

I think Jethro, and so many of us, are looking for hope beyond the procedures and equipment that you describe, Laurie. From a practical standpoint, you are of course spot on.

Even if our hope may be unrealistic, PALS desperately need it until the disease progression makes it clear that potential treatments won’t come in time. I’m still in the early stages, so I still hold some level of hope that an effective treatment might come from the many trials underway. But I am also realistic with my family (and myself) that neither time nor the vast number of failed trials works in our favor.

Neurological pathologies are still poorly understood and very complex. To quote H.L. Mencken, “For every complex problem there is an answer that is clear, simple, and wrong.” Here’s to hoping that one, just one, of the trials underway disproves that pithy observation. Kevin

 

[Nikki J]

The two shouldn’t be incompatible. As long as you don’t spend all your time money and energy chasing miracles and live your best life hoping for better treatment or even a cure is normal and fine as long as you don’t delay things you need to do because you are counting on it. Balance is important.

It is hard when you reach the point where anything in trial/ development will be too late. I have had friends and family get there and it is heartbreaking. There are other things to hope for of course- to see a milestone like a family or wedding to achieve comfort or peace.

 

[duster]

As re: charges, many hospitals bill insurers the anticipated amount of reimbursement. There isn’t enough detail on the EOB’s to really discern whether or not that’s the case here. But Florida providers have a reputation for being, shall we say, aggressive.