You won’t believe this gaffe….I’m lucky I survived

al in german dress and new earrings



The doctors think I might have an autoimmune condition called Sjogren’s disease. It’s treatable, not curable. I set up an appointment with the only rheumatology practice in my county. I waited for a month. I went and discovered I was not on the books. Now, I must wait another month.

My eye doctor prescribed something not on my insurance plan. Paperwork must be pushed. Prior authorization. No biggie, right? Wrong. Turns out they don’t do those.

The only way they’d consider it, the doctor said, is if I walked in the form myself and helped them fill it out. I called my Part D drug plan and they won’t send me a blank prior auth form. Against Policy, they say. I asked one girl four different times if she could send me the form and she didn’t give me a yes or no answer, just prattled on until I asked for a supervisor. And then another. And another. My medical records are mine. I should be able to get them sent to me return receipt, I’ll pay for the extra postage. Just send the MF’er so I can get my meds.

I’m the customer. This is Monopoly of CVS, Silverscript Part D, CVS mail order, CVS Drugstores (Hello can anyone spell Monopoly?) but where they get all their power (and profit) is as pharmacy benefit managers, (PBM’S).

They are the middlemen between pharmacy and wholesalers; cutting backdoor deals to drive customers to their stores by offering lower prices. Lots of people fall for this. It doesn’t matter if you’re rarely ill or are only on one or two meds.

I’m not in that category. With increased privatization of Medicaid and more and more private for profit Medicare ‘Disadvantage’ plans that don’t cover my University of Miami and University of Florida neurologists, quality and choice are going out the window. The small pharmacies are being driven out because the private hmo’s can make the rules.

And they didn’t even have to go to a ‘for profit’ Keiser or Trump University to get screwed. Come to think of it, neither do we.

Isn’t it funny, I tag bipolar but life’s challenges go way beyond that, I’m finding. I want to stay healthy but it takes a lot of work with all these side effects and aging.

WeGo: A new Ray of hope for Patient Activism

This is a response I sent to WEGO, who had a questionnaire for me to fill out regarding Tardive Dyskinesia. The letter came out of the blue but then again I am really public about my disorder so others can come out of the closet and find a speedy route to recovery. My path to symptom control was three years and fifteen fruitless doctor’s appointments.

am going to study your sites, missions, etc. I’m really interested in what you guys do at WEGO. When I first heard from you I thought that you worked for the drug companies. So sorry.

Dear Wego

I’d like to help level the playing field between the consumers, the drug companies and the doctors. This would be to help others make informed choices.  Sometimes it seems like there is an information war, and the professionals and Drug Companies are holding all the high cards.

I was never warned of metabolic side effects.  I’d like to put out my stories and my books so that other people can find a speedier, more precise route to treatment. Not all movement disorder specialists treat the mentally ill or tardive Dyskinesia, but are happy to see you, run lots of tests, do a complete workup and either tell you that it’s psychosomatic or hopeless. (or look at your chest constantly and write the medical record as you being ‘well built.’ Puuuleease.