Do we need advocacy efforts around the coverage of exon-skipping treatments by insurance plans?

My best research efforts suggest that the cost of AVI or GSK exon-skipping treatments, once approved, would run between 100k - 200k per year, per patient.

Further, comments by some folks I know in the health insurance biz indicate that these treatments would likely NOT be covered by private insurance, even if the Affordable Health Care law is fully or partially struck down by the Supreme Court this summer. I don't pretend to understand the legal issues here, so hopefully this is simply wrong.

Do we need to enlist advocates such as PPMD to begin preparing for a fight over coverage? I realize this is jumping the gun a bit since approval of either AVI or GSK drugs is pending.

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Out of curiosity, under what basis would an insurance company be able to deny coverage for an FDA approved treatment, for a disorder which has no other options?

 

Even if the Affordable Care Act is struck down?  The Act is what's making coverage a possibility.  It being overturned will cost some people access to the drug. (if it's approved)

 

Prior to passage of the Affordable Care Act, coverage could be denied based on your policy's annual or lifetime benefit caps.  Those are eliminated now, and are among the most important aspects of the legislation for those with serious medical conditions, especially rare conditions, which have very high treatment costs due to the limited market.

 

Yes, in my opinion we should be talking to our representatives about the provisions of the law that are very important to families in our community.  Like the benefit caps and the guarantee of coverage for those with pre-existing conditions.  Among others.  Not everyone in the community feels this way.  It's a contentious issue. 

 

PPMD has not made this part of their advocacy agenda - at least not to my knowledge.  I encourage you to talk to Ryan Fischer at PPMD about it.  We've discussed it several times. 

I don't pretend to understand how insurance companies make these decisions, much less what the law says they must do. I've tried directly asking my provider (Blue Cross of Oregon) but they won't discuss hypothetical situations like "if drug is approved then.."

My worries started when speaking to two friends in the health insurance business who were skeptical that private insurance would "cooperate" but I really didn't press much further. Their main point was that whatever the law is, private insurance lawyers may interpret the laws differently and they use that whenever they can to control costs. But I'm encouraged by your post, I probably just over-reacted.

That said, I have called and written my own congressman / senators about the broader issue of preserving (at least) the provisions of the ACA you've mentioned. I hope others will do the same. I find www.opencongress.org extremely helpful in this regard.

I will also contact Ryan. Thanks again Keith!

David, the most effective thing you can do is to show up at a local event your congressman is holding, introduce him to your son and have him understand how these policy issues impact real people.  

David said:

I don't pretend to understand how insurance companies make these decisions, much less what the law says they must do. I've tried directly asking my provider (Blue Cross of Oregon) but they won't discuss hypothetical situations like "if drug is approved then.."

My worries started when speaking to two friends in the health insurance business who were skeptical that private insurance would "cooperate" but I really didn't press much further. Their main point was that whatever the law is, private insurance lawyers may interpret the laws differently and they use that whenever they can to control costs. But I'm encouraged by your post, I probably just over-reacted.

That said, I have called and written my own congressman / senators about the broader issue of preserving (at least) the provisions of the ACA you've mentioned. I hope others will do the same. I find www.opencongress.org extremely helpful in this regard.

I will also contact Ryan. Thanks again Keith!

Also, if you get a chance to ask someone in the industry again i'd really be interested in how they'd respond to my question...

David said:

I don't pretend to understand how insurance companies make these decisions, much less what the law says they must do. I've tried directly asking my provider (Blue Cross of Oregon) but they won't discuss hypothetical situations like "if drug is approved then.."

My worries started when speaking to two friends in the health insurance business who were skeptical that private insurance would "cooperate" but I really didn't press much further. Their main point was that whatever the law is, private insurance lawyers may interpret the laws differently and they use that whenever they can to control costs. But I'm encouraged by your post, I probably just over-reacted.

That said, I have called and written my own congressman / senators about the broader issue of preserving (at least) the provisions of the ACA you've mentioned. I hope others will do the same. I find www.opencongress.org extremely helpful in this regard.

I will also contact Ryan. Thanks again Keith!

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