My Personal Cinryze Launch Approaches

16 Dec

The next step in the process of getting my hands on Cinryze has just been completed.

The specialty pharmacy that will be providing me with Cinryze, CVS/Caremark, called today. My case manager there, Mary, did an exhaustive medical history in preparation to ship Cinryze to my house (yay!).  From all the questions she asked and the things we discussed, it appears that I have been granted permission to do my own infusions (yay!!) and she even said she will be able to put together a travel kit so I can fly out to see my grandmother (double yay!!!).

I still have no idea how any of this is going to be paid for, but I can’t worry about it. After I calculated that one month of Cinryze is going to cost over $43,000.00, I blew all the gaskets in my head so fast I haven’t been able to think about it since. It’s the job of my case manager at Viropharma, Shawney, to worry about how all of this gets paid for, so (although I’m extremely curious) I’m just not overly concerned.

Instead, I’m really pretty damn excited! There’s a very slight chance I might be in business before Yule.

Holy Cinryze, Batman!

5 Responses to “My Personal Cinryze Launch Approaches”

  1. Stacy December 17, 2008 at 11:18 PM #

    Congratulations sweetie! This is wonderful news! I just hope the folks responsible make sure the financial side is taken care of too.


    • Faerie♥Kat December 17, 2008 at 11:25 PM #

      Found out this afternoon that they are delivering a 30 day supply of
      Cinryze tomorrow! Yippee! And that after my catastrophic maximum is
      reached, my insurance is going to cover ALL my health care needs for the
      rest of the year 100%. Okay, so there’s not much of the year left and I
      have about $2,600 left before I reach my max, but I should qualify for
      assistance from PSI, a non-profit organization that helps people with rare
      diseases pay for expensive medications and they’ve already started the
      application process. If all goes well, PSI will only have to fork over the
      $2,600 for December and then $5,000 for January and Blue Cross will pay for
      everything else in 2009–so keep all your fingers and toes crossed for
      me–mine are so crossed I think they may stay that way permanently LOL!
      I’ve been crying tears of joy all evening!

      > [Original Message]

  2. LisaMarie February 20, 2009 at 11:23 PM #

    I have just been diagnosed with HAE and have just enrolled in a trial study at LSU Shreveport Medical Center. While talking with the doctors today, they were not aware that Cinryze is approved and available. I would like to get the treatment set up so I go to my regular physicians office for the treatments. Is there a certain DR or medical group I should be contacting? Any help would be greatful. This is all a little overwhelming. Thank You.

    • Faerie♥Kat February 21, 2009 at 12:03 AM #

      Hi LisaMarie

      Yes, this is more than a little overwhelming, and the good word is that
      there is a very large and supportive network ready and waiting to assist
      you with every aspect of dealing with HAE, including getting access to
      Cinryze — yay!

      Your first step is to contact appropriate Hereditary Angio Edema
      Association (HAEA) Patient Services Representative for your region of the

      Region #1: Arizona, Colorado, Washington DC, Kansas, Kentucky, Maine,
      Nebraska, New Mexico, Nevada and Texas
      Contact: Michelle Williamson, Phone: (972)814-5205, Email:

      Region #2: California, Iowa, Illinois, Indiana, New Hampshire, Oregon,
      Tennessee, Utah, Virginia and West Virginia
      Contact: Lois Perry, Phone: (559)259-0572, Email:

      Region #3: Alaska, Hawaii, Idaho, Minnesota, Missouri, Montana, Rhode
      Island, Wisconsin and Wyoming
      Contact: Donna Davis, Phone: (808)216-1029, Email:

      Region #4: Connecticut, Delaware, Florida, Massachusetts, New Jersey, New
      York, North Dakota , Ohio, Pennsylvania,, Vermont and Washington
      Contact: Sally Urbaniak, Phone: (904)826-6700, Email:

      Region #5: Alabama, Arkansas, Georgia, Louisiana, Maryland, Michigan,
      Mississippi, North Carolina, Oklahoma, South Carolina,, South Dakota
      Contact: Jenny Barnes, Phone: (252)585-0763, Email:

      Your HAE Patient Services Representative will provide you with the name and
      phone number for a Cinryze Solutions case worker.

      When you call your Cinryze Solutions case worker, he/she will ask for two
      bits of information: (1) the physician who will be setting up your
      treatment plan and (2) the name of your insurance company (if you have one).

      Your Cinrzye Solution Case worker will then take it from there (they will
      contact your doctor and help him/her write the prescription, explain the
      whole process, etc., they will review your insurance coverage and arrange
      for financial assistance if you need it) and begin the process that will
      ultimately result in you getting access to the medicine. If at any time,
      you believe there is not sufficient progress being made with your case,
      PLEASE contact your HAEA Patient Services representative or Donna Davis
      right away:

      Before going further, let tell you about the pledge made by the leaders of
      ViroPharma–the company that is distributing Cinryze. According to
      unfortunate that insurance companies usually always initially reject
      coverage for new drugs needed by rare disease patients. The resulting
      delays and hurdles are not fun, but please take heart! Check in with your
      Cinryze Solutions case manager and always be a participant in your health
      care management.

      ViroPharma’s Cinryze Solutions team and the HAEA’s capable and
      compassionate Patient Services team possess the collective expertise to
      help you through every step of the process and make referrals to a group
      (called PSI) that will provide financial assistance to HAE friends who
      might need it.

      The HAEA has a website that you will want to familiarize yourself with, so
      please visit at your first opportunity.

      Good luck, and please let me know how you get on; you can send me an email
      communication directly using the “contact the faeriekat” link under my
      blog’s top banner.

      Best of no swell days ahead to you,


  3. LisaMarie February 22, 2009 at 7:56 PM #

    Thanks for the info, we will be pressing ahead Monday morning.

    Thank you
    Lisa Marie Young

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