Needed: A National Standard for Denying Denial of Coverage for Care

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This area of is devoted to, as the title indicates, disease prevention.  But we Preventive Medicine specialists aren’t all that fussy, or perhaps you could say we have territorial ambitions.  When we can’t be with the prevention we love best, we are prepared to love the prevention we can get.  In fact, the expansive terrain to which we lay claim even has a name- Leavell’s Levels – for Dr. Hugh Leavell who first characterized our purview as encompassing primary, secondary, and tertiary prevention.

So when I write now about the case of a patient with advanced cancer, this is no longer about the opportunity I like best, keeping healthy people well (i.e., primary prevention).  This is about keeping a young man with a devastating illness alive (i.e., tertiary prevention) so he gets some measure of the years that should have been his birthright.  This, too, is prevention- if at the extremes of the envelope.

The case in question is that of Manny Alvarez, a college student in Florida with an absurdly rare and rather horrible cancer, alveolar soft part sarcoma.  I have already told Manny’s story, so won’t belabor it here. Manny’s terrible disease is now compounded by an insurance company refusing to cover the chemotherapy most likely to be effective, because it is not standard care for this cancer.

There is, however, one very flagrant problem with that argument: there is no standard care for this rare cancer.

I have already asked everyone to fight this insurance company decision on Manny’s behalf, so that he may devote the full portion of his energy, resolve, and spirit to fighting the cancer.  That’s more than enough to ask of him.  We can help him by spreading the word; by signing a petition; and by contributing directly to the family’s ability to pay for what the insurer will not.

  By all means, please help.

But here, I am writing for another purpose, moving on from Manny, to the general problem.  Cases such as this should not be subject to the arbitrary inclinations or even the moods of insurance company bureaucrats.  There should be a national standard which, if met, precludes denial of coverage for anyone who has paid their premiums.  There should, in other words, be a nationally applicable, objective standard for denying insurers the right to deny patients the coverage for which we all pay.

The criteria in any case like Manny’s seem rather clear to me. I would suggest the following:

  1. No standard treatment has been overlooked. (If an insurer is suggesting such a treatment has been overlooked, they are obligated to state what it is, and to cover it.)
  2. By the assessment of a qualified physician, care is needed urgently.
  3. By the assessment of a qualified physician, the specific care being sought is recommended.
  4. Objective evidence of the actual, or potential, efficacy of the specific treatment sought for the specific condition is available.  (This is important to preclude requests for potentially futile therapies.)

    That’s it.  Were such a standard in place, Manny would still be fighting the terrible injury of this cancer, but at least would be spared the inhumane insult of a company placing dollars ahead of a young man’s best chance at life.  Manny needs this now.  There is no telling who among us might need it next, for we are all made of the same stuff, and all share the same vulnerabilities.

    For Manny, then, and for us all- please say “amen,” and share with everyone in your congregation.


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