Cost of Cinryze & Costs Associated with Using Cinryze

10 Jan

What follows is an email I composed for the Hereditary Angio Edema (HAE) Digest in response to requests for information, posted here for those who may not be on the Digest’s mailing list (to join the mailing list, which is open to HAE patients and their families, click here).


Keeping in mind that I use Cinryze three times a week and one shipment contains 12 doses (i.e., 24 bottles)…

I received my first shipment of Cinryze two days before Christmas and co-pay was maxed out at $2,700, only because that was the amount it took for me to reach my catastrophic maximum for the year. Apparently it would have been more, but I won’t know by exactly how much more until I receive the Explanation of Benefits from my insurance company (frankly, I was afraid to ask my specialty pharmacy case manager the total cost because I didn’t want to have nightmares!). I have a catastrophic maximum each year (the maximum for 2009 is $5,000). When I receive my next shipment of Cinryze next week (NLT Thursday 1/15), my co-pay will not exceed $5,000.

My shipments also contain 24 bottles of sterile water (to reconstitute the Cinryze), saline and heparin flushes with matching micro-clave (they were worried they might not match what I had, so they sent their own), double-ended transfer needles (to transfer the sterile water to Cinryze bottle), and empty syringes and needles to extract the reconstituted Cinryze.

Someone emailed for the following information and so I will share it also. Since I infuse at home, the following supplies are required and I currently receive them from a medical supply company by prescription by my immunologist (when these supplies run out, they will probably be supplied by the specialty pharmacy since it doesn’t make sense to have delivery of the supplies divided into two sources) (Note: The exact supplies you may need/use could differ depending upon your needs/supplier or availability):

  • Pre-Filled Saline Flushes
  • Pre-Filled Heparin Flushes
  • Central Line Dressing Change Kits that contain: Sterile Drape, Sterile Gloves, OpSite Dressing, Chloraprep Sepp Applicator (to clean/sanitize skin over/around port; most kits contain betadine, but I’m allergic to betadine), Mask, Alcohol Pad, Tape, Gauze, etc.
  • Micro-Clave (this fits on the end of the IV line so you can attach flushes/syringes by twisting onto end instead of using a needle)
  • Biopatch
  • Huber Needle with attached IV line
  • Protective Skin Prep (I’m really sensitive to adhesive and this gives me some protection from the OpSite)

My co-pay for these supplies was running $45/month.

I must also note here that I applied and was approved for assistance through PSI, who paid my first co-pay of $2,700 and will pay my full co-pay for Cinryze (but not supplies) through 2009. Their assistance will be capped at $5,000 because my insurance company will cover ALL my medical expenses thereafter and their assistance will no longer be required. Your Cinryze Solutions case manager is responsible for recommending you to PSI for assistance. Once they recommend you, PSI will contact you, provide you with the application form, advise you of the documentation required (it’s very minimal), and advise you of their determination.

Your Cinryze Solutions case manager is also there to help you determine if your insurance (1) covers Cinryze, and (2) how much of the cost they cover. If you cannot determine if your plan has a catastrophic maximum limit, give them a call and find out. If you do not have any insurance, your Cinryze Solutions case manager will recommend you to PSI for financial assistance.

I am very blessed to have such a wonderful insurance plan and to have worked very closely with Cinryze Solutions from their inception so that I could quickly get access to this new HAE treatment. In return, if you have any questions about the process or the use of Cinryze, I will do my best to answer.

No-swell blessings to all,


DISCLAIMER: The above comments are based on the personal experiences and opinions of the writer, and any errors are unintentional oversights (or possibly just plain ignorance). Readers should always consult their own physician for current and official medical facts, advice and opinions. ALWAYS take everything anyone (including me) tells you with (preferably) two grains of salt (especially if aspirin upsets your stomach as this could result in an abdominal attack [grin!]) and please don’t call me in the morning if you don’t like what I say. Bright blessings for a happy and swell-free day.

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