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Originally Posted by vlhperry
My HMO covered the cost of testing. I had mine tested at Athenia Diagnostics. With the new health care system coming, maybe that changed, but seems to me that Private Health Insurance has as much to gain from genetic testing information as the Pharma companies do. Helping gather information by paying for Genetic testing could pay off for the Private Health Industry Industry Bigtime!! No more paying for Pharma drugs, etc. when the info is used to find cures!!
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Vicky,
I find insurance coverage nothing but absurd anymore. Maybe it is a limitation here in MI, but I have pursued genetic testing and clinical trial participation with two MDS here and have received discouraging replies. Either little genetic testing is reliable and I have to pay out of pocket for each one. I can't participate in a trial unless one of my parents has been diagnosed with PD. BTW, my father has a clear benign essential tremor in both hands - has had it since he was a young man. I presented with a tremor in right hand only and six years later have other mild PD symptoms.
I would think that the tremor bridges us from one disorder to the other. No one seems at all interested in my particular familial link though it may be a unique one connecting ET and PD. Short of chaining myself to the door of the NINDS or taking full page ads in journals, I am not sure how to get their attention. Please, if you have any leads, I'd be happy to pursue.
As for insurance absurdities, Aetna will not cover the cost of a PET scan in differential diagnoses because it is too "experimental", yet it will cover the cost of one of the Sniff test cards-and somehow that is definitive?? I have not lost my sense of smell, so that means I don't have PD according to them. It all has to do with what they want to pay for.
Laura