The Alexis Shapiro Case: Divergent Perspectives on Coverage Decisionmaking

Alexis Shapiro is a 12 year old girl who started gaining weight uncontrollably due to a rare condition caused by damage to her brain during the removal of a brain tumor.  Her and her parents’ struggle to get her gastric bypass surgery to curb the weight loss made national news for much of the winter in several outlets.  Happily, in March she had the surgery and she now appears to be doing well.  A good outcome, but boy was the process by which we got here a painful one, largely because the insurer understood the coverage decisionmaking process differently than the rest of us.  Here’s a timeline, and some reflections:

Sometime in the summer of 2013 (I haven’t found the exact date), the Shapiro family found a doctor they trusted who concluded that bariatric surgery could help her.  But the contractor for their insurer (Tricare) refused to cover the surgery.  Such coverage denials are subject to appeal, and the family planned to do so.  But fearful that the appeal would be unsuccessful, on July 22, 2013, the family setup an account on, a site patients can use to crowdsource medical expenses (the site takes 5% + of the donations).

Fast forward five months, late December 2013.  The family had only raised a few thousand dollars through fundme, but then on December 28, 2013, NBC News ran a piece on Alexis Shapiro’s heartbreaking condition.  The story quickly went viral.  (As for the appeal, the NBC News piece quotes Tricare as essentially saying Shapiro was denied coverage due to a formula but that she could seek a case-specific exception through the appeals process, and indicates Jenny Shapiro (Alexis Shapiro’s mother) was worried the appeals process would be too slow and still might not result in a good outcome.)

By January 3, 2014–less than a week later–two things had happened. donations had gone all the way up to $78,000, and Tricare reversed its decision denying coverage.  The Shapiro family said that they would now use the donated funds to help with travel and related expenses and hoped to donate any left over to Childrens’ charities.

Now, four months later, Alexis Shapiro has had the surgery and by all accounts it has put her on the path to a better quality of life.  But I see in this anecdote a problem in the way “we” make healthcare coverage determinations that results from a divergence between the way the insurer understood the decisionmaking process and the way the patient, doctor, and public understood it.  In this case, it sounds like the insurer was looking at the appeals process as a way for doctors and patients to engage with, and often overcome, largely automated initial decision mechanisms that apply coverage by formula.  A give-and-take, with the initial decision as something like the starting point for the conversation; a presumption from which to work.  From that perspective, it probably is not surprising that initial denials are reversed at something like a 50% clip.  (See story here.)  But obviously that was not the family’s or America’s perspective in this case; they took the coverage denial letter as reflecting a good indication of the insurer’s final decision, and were dismayed and frustrated (from the insurer’s point of view, prematurely) as a result.

There is a lot here, but my quick take is that a better process would either (1) force the insurer to incorporate fact-specific considerations in its initial decisionmaking (which would be costly and burdensome), so that the initial decision was a better indication of the insurer’s likely final position, (2) better educate the patient about the tentativeness of the insurer’s initial decision, or (3) encourage the doctor to be more aggressive in managing expectations and pressing the patient to pursue an appeal upon receipt of a denial.  Note that as compared to these three options, the current approach produces a greater number of “false negatives,” that is, it produces more erroneous denials of coverage that go uncorrected because the patient (or her doctor) does not appeal.

2 thoughts to “The Alexis Shapiro Case: Divergent Perspectives on Coverage Decisionmaking”

  1. 1. You’re at Harvard? This is the quality of the writing at Harvard?

    2. You really haven’t done your research. Had you done the heavy lifting of reading online news reports, you’d have found that the doc and parents did not believe that Alexis would live through the appeals process. That’s why her mother started the fundraiser. Tricare later claimed that they hadn’t been given complete information about Alexis’ condition, and that they were unaware that this was an unusual situation. (No one investigated that claim, though given the comprehensiveness of the accounts the family and doctor have given since, it seems unlikely that they’d have turned in a form saying “12-yo girl obese, doc wants gastric bypass” and left it at that.) In any case Tricare’s statement sort of cuts your argument off at the knees; the insurer is claiming that had it only had case-specific info, they’d have seen things differently.

    The real insurance issue here has to do with insurance companies’ obligations to cover experimental treatments in life-or-death situations in which no other therapy has been found effective, not just for that patient, but generally. She has got a very rare condition which does often result in morbid obesity, among other problems; children do die from a combination of the effects of obesity and the other endocrine disorders resulting from the condition; only a handful of kids have been given bariatric surgery as a last-ditch therapy. The surgery can accurately be called experimental.

    I hope you learn to research, think, and write better while you’re at the big H. Good luck.

    1. Amy,

      Do you think I am wrong that this case illustrates a difference in the way health insurers and the rest of us perceive initial denials and appeals? Could you say why?

      Your suggestion that the doctor in this case may not have provided the case-specific details in the initial request for coverage underscores this point, I think, rather than undermining it. Assume for the sake of argument that is really what happened; the lack of details in the initial request only makes the initial denial more tentative from the insurer’s perspective. Yet that does not seem to be how the family or the world took it; they justifiably understood a “notice of denial” of coverage to mean that their insurer would be unwilling to pay. The story that went viral was headlined “Girl, 12, denied weight-loss surgery for rare illness.” It says in the lead paragraphs “the US military . . . says it won’t pay” and then goes on to discuss the family’s and doctor’s objection to the military’s decision. It gets around to mentioning the possibility of coverage being granted through the appeal process in paragraph 10. To be clear, I think that the family’s (and the Article’s) understanding of the denial was completely justified. But if that headline had read “Girl, 12, provisionally denied weight-loss surgery by Managed Care Support Contractor but decision pending reconsideration by medical professionals at Tricare,” the story would have read differently.

      You also point out that the family was worried an appeal would take too long. I noted that in the post, too. That gets into related issues about the rules for emergency appeals and whether they are sufficiently protective, but I wanted to focus on the differing perspective issue in this post.


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