The problems in healthcare don't need the medical profile of someone with cf to manifest its many shortcomings. I don't know your circumstances too fully but "Medical Necessity" is the buzz phrase for addressing "competent" medical care, perhaps a little emotion with an elevated tone of voice facilitates some heightened reciprocal response from a case manager or claim adjustor, but the case for <span class="FTHighlightFont">medical necessity</span ft> is the route to follow because there is a "suable" legality associated with its determination; and it goes fully to Hippocrates' philosophy and not to "worthiness" of a patient. It can be considered a definition of "first do no harm". Inaction is harm.
As an aside Look up Stewart Alsop a man of considerable sway in his day.
A quote from Wiki <a target=_blank class=ftalternatingbarlinklarge href="http://en.wikipedia.org/wiki/Stewart_Alsop">Wiki Reference</a>" He published several books, including a "sort of memoir" of his battle with an unusual form of leukemia, Stay of Execution. At the end of his battle with cancer, he requested that he be given something other than morphine to numb the pain because he was tired of morphine's sedative effect. His doctor suggested heroin."
<a target=_blank class=ftalternatingbarlinklarge href="http://www.time.com/time/magazine/article/0,9171,911403-2,00.html">A reference to Stewart Alsop</a> "In his long sieges in the hospital, lying alongside other terminal cases, he made his own radical conclusions and offered some radical remedies: a patient suffering beyond endurance should be given the choice to end it. If the patient refuses that option, he should be allowed as much pain-killing drug as he wants, and that drug probably should be heroin, which is estimated to be four times as effective a painkiller as any alternative drug. 'If a human being must die, it is surely better that he die in the illusion of painless pleasure - and heroin is very pleasurable - than in lonely agony.' "
Don't get mad so much as to get results from a reasoned and "impassioned" case for stabilizing Kari's medically necessary need for comfort and diminished clinical anguish through pharmacological mediation (Dilaudid).
Dr Peter