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 fundme.com, 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. Fundme.com 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.