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Watch for loss of confidentiality DESPITE refusing to enroll in support program

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    Watch for loss of confidentiality DESPITE refusing to enroll in support program

    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:

    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.

    It's probably like the Crime Stoppers number -meant to be anonymous, but it's not. You ring, they have the number. Not a fan of Aubagio anyway.


      Watch for that Aubagio Start form

      Well, it turned out to be the manufacturer, which surprised me, because I was betting on the Cigna Speciality Pharmacy based on prior experience with a regional chain pharmacy, Kinney Drugs, just last year, printing out targeted messages--with my full name on them--for nearly each and every drug I filled there.

      I called back 855-676-6326 and spoke to the same person who caught me off guard the day before.

      From Aubagio Web site:

      Once you and your doctor have decided on AUBAGIO, your doctor fills out an AUBAGIO Start Form and you sign it.

      That single form acts as both your prescription for AUBAGIO and enrolls you in MS One to One™ Support for AUBAGIO—a comprehensive support program that will help guide you through your treatment and be a resource for information and emotional support along your MS journey.

      Well, I did not sign it!!!!!!!!! With 100% certainty I can say I did not sign this. The nurse was able to pull up the form and stated a provider signed it--but that is not me! I was told by the nurse just submitting the form allows the Aubagio Support Program to call you--once.

      Watch out for Genzyme.... I am pursuing see if this is even legal. It's too bad for me the ACA started this year because the normal channels I use to get health care legal questions answered is jammed.....


        Are you taking their drug?

        I know the enrollment form must be sent to the drug company to start the process of you taking any drug company's DMD.

        Your signature on that form gives them consent to do a number of things from contacting you for information to actually mailing you the meds.

        I personally can't believe your doctor sent in that form without your signature and, also, I can't believe that you expect the drug company to provide this DMD to you when you are not even willing to allow them to call you.

        MS and DMDs are definitely not like running to my local pharmacy and refilling my asthma inhaler. All DMDs come from specialty pharmacies. Every single month when it's time to refill/mail my RX, the drug company will call to check on me (which I appreciate). Then they will send the RX to the specialty pharmacy. They too call occasionally. I consider these very small inconveniences and am willing to accept them in order to keep this train running smoothly.

        Sorry for the rant. I just want first-time DMDers to understand that this is a complicated process. If we want their drugs, we have to do it their way.
        Dx 3/4/12. Tec X 2 as of 7/7/13
        Weebles wobble and occasionally they DO fall down!