Rare Disease, Rare Indifference, and the Case for Our Righteous Indignation

Rare Disease, Rare Indifference, and the Case for Our Righteous Indignation
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There are times when the addition of insult to injury warrants more than our forbearance. Sometimes, it warrants righteous indignation, and a revolt. This is one of those times.

The insult in question is the denial of coverage for care by Blue Cross Blue Shield of Florida.

The injury is a rare and rather dreadful cancer of connective tissue in a 23-year-old student at the Florida International University, named Manny Alvarez. I don't know Manny personally -- but there is little separation between us. My daughter is a student at the University of Florida, and Manny is her friend and the boyfriend of one of her best friends and classmates.

But we were connected anyway -- because Manny is me, or you. He is our brother, or son. There but for providence goes any of us, or someone we love. Manny's cancer -- alveolar soft part sarcoma -- has nothing to do with anything he did or didn't do. The cause is almost certainly some as yet unidentified genetic factor. Manny was a happy, healthy, and by all accounts perfectly delightful young guy just living -- when at age 22, he discovered lumps on his arm and leg. Just like that, the slender thread from which we all dangle was revealed. He had an already advanced form of a rare, devastating cancer spread throughout his body.

Manny has suffered accordingly, although he remains both resolute and optimistic. After all, his whole life is, or should be, ahead of him -- and he wants it. He deserves it.

But he has suffered. With few good options, Manny was enrolled in a clinical trial at the NIH, where he received chemotherapy. Despite that treatment, the tumors progressed to the point where they threatened his limb -- requiring a partial replacement of his femur, and his knee.

His family's insurer, Blue Cross Blue Shield of Florida, has no doubt already incurred considerable expenses -- but that's why we have, and pay for, insurance in the first place. Few of us will ever need treatment for a rare cancer, but we all pay our premiums so that those who do -- will get it.

The story next takes a turn that warrants our collective action -- in defense of a young man who deserves every chance we can give him to live; and in defense of our shared skin in the games of fate.

Manny's oncologist at the University of Miami, Dr. Breelyn Wilky, had tumor specimens from the surgery tested against an array of chemotherapeutic agents. Rather to everyone's surprise, and much to their delight, a group of medications customarily used to treat leukemia was highly effective against Manny's cancer in the lab, killing all of the malignant cells. Manny's doctor submitted a request to cover the costs of this treatment, which runs to roughly $300,000. The insurer declined. The denial was appealed, and again declined.

It's true, the drugs most likely to give this young man an extended portion of his life back are not standard treatment for ASPS with metastases to the lungs. But then again, there is no standard treatment for this condition. The drugs are FDA approved for the treatment of cancer- just a different cancer. In other words, if Manny only had a more conventional misfortune -- i.e., a more common kind of devastating cancer -- there would be no conflict.

If use of these drugs in Manny's case were all about wishful thinking, we could better understand the insurance company case. Much as we might all want "everything" done in a desperate situation, an insurer is justified in denying coverage for treatment almost certain to be futile. But this is not that scenario. The drugs in question have been tested directly against Manny's cancer, and been shown to work where nothing else does. They are FDA approved- and would be covered if Manny happened to have a different, far more common cancer. Manny's cancer has no standard therapy at lower cost that "should" be tried instead.

This is not a hard call. Someone needs to fork over the money to cover this therapy -- either the insurance company that clearly should, or the family that doesn't have it.

Let's fix both. Manny's family is accepting charitable contributions here; please help them help their son. I will do the same.

But really, we have all paid for this care already. We pay for our insurance so that it's there when we need it. Manny and his family now need exactly what we have been paying for all along: coverage of costly medical care a doctor deems essential, and potentially life-saving. There is nothing ambiguous about this scenario.

So, let's insist that Blue Cross Blue Shield of Florida remember its mission, and that human lives are the priority. Manny's care, whatever it costs, is unlikely to make too big a difference in the lives of company executives or shareholders; but it may make all the difference in the world to Manny life, and those who love him.

Let us, then, defend this young man- who could be, or could belong to, any of us. Please help Manny's family, share this column widely, and sign this petition. Manny's injury is already far more than any young person should be asked to bear. Let's tell Blue Cross Blue Shield of Florida that Manny's extended human family will not tolerate the addition of insult to it. His rare and terrible disease is, alas, the challenge this young man cannot avoid; rare indifference is a complication he certainly should be spared. Let us meet it with our collective, righteous indignation -- and make it so.

Thank you.


Director, Yale University Prevention Research Center; Griffin Hospital

Editor-in-Chief, Childhood Obesity

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