Okay, someone is a weasel, I just don't know who yet.

I got a call Monday out of the blue from the Aubagio support line. When I called it back later the line identified itself as the MS One-to-One support line. They were closed, so the question the begs an answer is, How do they know I exist and my phone number?!!! I was so floored, I did not know what to say, and basically disputed I needed any assistance. I was in a public area so I wasn't getting in to it there.

Looking up the program's name, I found this under Privacy Policy:

PRIVACY POLICY AND NOTICE OF INFORMATION PRACTICES
Information Genzyme Collects
Personally Identifiable Information

Genzyme only collects personally identifiable information, such as your name, address, telephone number or email address, when you voluntarily submit it to Genzyme.

I refused to fill out, let alone sign, the paperwork that was stuck under my nose, regarding the support program when at the neuro's. I paid the paperwork so little heed that I did not even know what it was called until about 6 hours ago.

I did Tecfidera with Aetna Medicare and their specialty pharmacy, a CVS in Monroeville, PA, last fall and refused to enroll in that program as well. This worked as should have and I never heard from Biogen.

What is different? A new manufacturer, Genzyme. A new insurer, Cigna Medicare. A new specialty pharmacy I am unclear on where it is under contract with Cigna. One of these three has to be the weak link.

I wasted more than an hour on hold between Cigna's specialty pharmacy and insurance customer service. Both agreed that a release of my PHI would be a violation of law. I asked if they felt I somehow unwittingly signed away my confidentially and was told no. It was suggested the doctor's office had because I needed a PA. All these MS drugs require a PA and my neuro knows how I feel about this. It was suggested maybe they needed assistance. I stated I showed up at the appointment with my Cigna card and faxed the neuro the form to obtain the PA, so no, why would they need manufacturer's assistance on this?

Experience has long shown my income is too high for any support. Matter of fact, these programs often consider Medicare "the assistance" and provide nothing more than very explicit advertising in my mailbox. I don't need anyone picking this crud out of my recycling or receiving it in error and learning something they should not know.

Let this serve a warning as well as venting for myself. I will write back once I find who the weak link is, and it could take a while, but for now, I strongly suspect Cigna or its specialty pharmacy violated the law.