Today Kaiser held their "meeting" (with us specifically not welcome). Although they discussed Rory's care, they refused to let Rory have any say in his care. This violates Kaiser's own signage all over their facilities, which state that patients have a right to

"have impartial access to treatment. You have the right to any medically necessary treatment as prescribed by your Permanente Medical Group or Plan physician that is a covered Health Plan benefit, regardless of your age, race, color, national origin, religion, sex, sexual orientation, cultural background, or physical or mental disability."

By providing him with the medication previously, the medication is a covered Health Plan benefit.

Well, it seems that they are not giving impartial access to treatment. They made a medical decision about Rory without allowing him any say in it, for a treatment that is being used across this country to treat calciphylaxis. And Kaiser keeps saying "experimental". Wrong term, guys. It is OFF-LABEL USE OF AN FDA APPROVED MEDICATION, which the EPA says is used to treat calcinosis (something his docs denied - if the EPA has it documented from the year 2000, then it has been used an additional 4 years beyond that report).

We don't even know who was involved in this decision, except for his nephrologist. We do not know if these people are M.D.'s, what their expertise in calciphylaxis is, if any at all (most physicians don't even know what it is, including the E.R. we saw last night.

So, Kaiser has made the determination to not treat Rory's condition, since it is now obvious that dialysis is doing absolutely nothing to improve this. The sodium thiosulfate was actually working. It had this disease on the run, and had Rory pain free, with the exception of two dialysis days. Now, he is back on fentanyl patches and dilaudid, which isn't controlling is pain very well. ATTENTION KAISER: Isn't the ultimate goal the health and well-being of the patient? Isn't improving a patient's quality of life important? Or is more important to sacrifice a patient rather than admit that you do not know everything?

Please, please reconsider your death sentence for Rory. Writing him off will not end this by any means. He is a patient of yours, he deserves quality medical care, not substandard treatment by uninformed persons. Remember, Kaiser used to be pioneers in medical care, not the backwaters of medical care. Kaiser used to be concerned with the welfare of their patient's, not the bottom line.
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