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damon459 t1_j0whbjm wrote

Will anyone be able to afford it though?

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silverbolt2000 t1_j0whx0u wrote

In the US? No.

Everywhere else in the world? Yes.

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katarh t1_j0wy2s7 wrote

One of the trial participants is Italian, and now that the trial has ended, he's lost access to it. They're trying to get him emergency compassionate use authorization through the Italian government so he can have access again.

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the_real_mvp_is_you t1_j0xf40w wrote

Insurance covers a lot of things for these people since most of those with RDEB are on Medicare.

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damon459 t1_j0xiihn wrote

Medicare itself does cover prescription drugs, you need a part D plan and believe me they have no good options, I know as I was on disability for 18 years and my employer sponsored health insurance is way way better and costs less.

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