FDA Approves Cinryze

10 Oct

The FDA announced today its approval of the C1 inhibitor treatment, Cinryze, for the prevention of Hereditary Angio Edema (HAE).

Now starts the battle to have insurance companies and Government entities like Medicare and Medicaid pay for this life saving product.

It is anticipated that it be will four to six weeks before the product becomes commerically available.  I will be attending the HAE Association’s 2008 National Patient Conference and International Leadership Forum next weekend and am sure I will have much more information to share on this subject when I return.

5 Responses to “FDA Approves Cinryze”

  1. Marvin October 11, 2008 at 11:38 AM #

    Hurrah! Are you looking forward to your Forum? Is it far away from you?

  2. Faerie♥Kat October 11, 2008 at 12:09 PM #

    Hello My Favorite Martian!

    I am and I am not.

    I don’t travel well and I’m not looking forward to the expense, although as of today, the HAE Association is going to foot the expense of my hotel and the conference fee (which includes all meals on Saturday and Sunday breakfast); they are considering paying my air fare as well. What does a faerie wear in Chicago at this time of year? If I know you, you’ll probably advise a nice short skirt and a helmet!

    On the other hand, I’ve only ever met one person face-to-face (outside my family) that has this disorder and this will be a fab opportunity to meet “others of my kind.” It also will be my chance to express my dissatisfaction in person about not being able to have this treatment at home or being able to give it to myself (which therefore makes travel impossible for more than 2-3 days and is keeping me from traveling to Utah to see my Grandmother–something I hope to remedy before she leaves this earth).

    So I have very mixed emotions, but I decided at the last moment to get over myself and go. I found an exceptionally cheap fare on Southwest (although I have to fly into Midway instead of O’Hare and take a 50 minute shuttle over to the O’Hare Marriott that will set me back $16 each way, but it will save me about $300 buckaroos, the flight is non-stop and the flight times are perfect–so I’ll cope), so even if I have to pay the whole thing myself, I won’t have to liquidate my whole money market account to keep Discover from bankrupting me with interest!

    I’ll let you know how it goes (providing I don’t die from wind shear taking off or landing).


  3. gt281 October 11, 2008 at 5:54 PM #

    The Goddess does smile apon you this day…Chi-town huh?
    Tis only a few leagues from the land of the cornstalk King,,
    and his dungeon abode…Ever closer do you come to me…Ohh,,
    if only I had a mighty steed that could carry my girth unto
    the windy city…Alas and woe……..

  4. Faerie♥Kat October 12, 2008 at 9:11 PM #

    I swoon at the mere thought of being 20 leagues from your withering cornstalks–what will I do when I hit the windy city? Why, I’ll be blown away, methinks! I’ll send a few faerie-wicked thoughts your way while I’m about, so be sure to send Puff out to catch them.

    For GT from Kat


  1. Why is Cinryze So Expensive? « Faerie♥Kat’s Faerie♥Korner - January 22, 2009

    […] has never been imported from Europe by HAE patients and did not, in fact, exist until it was approved by the FDA on 10 October […]

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