Thursday, September 12, 2019

Nataline Redux

In which I play the bad guy:

Regular readers may recall the sad case of  Nataline Sarkisyan, "a 17-year-old girl who died hours after her health insurer reversed its previous decision and said it would pay for a liver transplant planned."

There was a lot of finger-pointing, and plenty of blame to go around, but there were also some key issues that prompted much circumspection:

The insurance carrier (Cigna) had initially refused a liver transplant, the fact that experimental treatments are (at best) problematic, and whether PR should override best practices.

Regardless, Ms Sarkisyan ultimately passed from her condition.

Now, fast forward almost a dozen years, and we learn of a young mother who, having undergone "major surgery to remove thyroid cancer ... has never truly recovered." She was fortunate to find a "world-renowned expert in dysautonomia and autonomic neuropathies," and began treatment.

Unfortunately, these appear to have been largely ineffectual, and she's now at a very dark place indeed:

"The only treatment that is anticipated to help her is expensive, costing $6000-7,000 per infusion, and the doctor has prescribed 6 infusions to enable her body to reconstitute itself and get her on the road to recovery."

To that end, her family has set up a GoFundMe campaign [full disclosure: I have donated to it] hoping to raise enough money to cover most (if not all) of the expected costs.

Okay, a worthy cause, but why isn't her insurance company covering it (or at least most) of it)?

Well, that's because the carrier, Aetna, "has refused to pay for the treatments, calling the drug "experimental" and providing no recourse for her worsening condition."

Seems familiar, no?

[ed: for the purposes of this post, we'll table discussion of an insurer's putative responsibility to offer alternative treatment suggestions]

As noted in the GFM, there have been appeals and advocates, apparently to no avail.

As a parent and husband myself, I can certainly sympathize with the family's plight, but I have some questions.

So I've reached out to both Sarah's family and her insurance company, and would like to share what I've learned:

Her father, who was very nice and forthcoming, had no direct knowledge of the plan's details. He in turn put me in touch with his son-in-law (whose employer's coverage is the insurance at issue). Unfortunately, he has yet to respond (I'll update the post if/when he does).

In the meantime, I also reached out to Aetna:

"Good morning!

We're working on a post about [the GoFundMe], and would like to have Aetna's side, as well. We understand that you can't comment about this case specifically, but would be interested in speaking/emailing with a claims person who can address the dynamic between experimental vs medically necessary treatments.

Looking forward to hearing from you

About which co-blogger Bob gently prodded me:

"Still tilting at windmills?

Carriers RARELY set their own standards for medical necessity, experimental, provisional. Much easier to follow CMS guidelines as in  "it's not my fault, this is how Medicare handles it."

Doubt you will get very far with this, even without factoring PHI complexitie

I knew that he was right, but "in for a penny...."

In the event, I did, in fact, hear back from them:

"Hi Henry:

My name is Ethan Slavin and I work in the Communications department at Aetna. While we can’t comment on this specific situation (as you noted), we can provide you with our general overview on how we make coverage decisions.

You are welcome to use information from this page for your post, as you see fit.

Please let me know if you have any questions

Which was not unexpected, and actually helpful.

I would still like to know whether or not the plan in question is self-funded (because that could make a difference), but the reality is that Bob's correct, and while sad, this is pretty standard, and not subject to online petitions and the like.

Again, I'd ask why the venom is being directed at Aetna and not the folks with the high-priced meds, or the providers who would administer them.

But that's just me.
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