Cost of Cinryze – Detailed Answer

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).


I just received my first Explanation of Benefits (EOB) for my first delivery of Cinryze in December 2008 and can finally give a full and complete answer to the subject question.

First, the shipment was billed as a prescription drug, not as a medical service (as I was told it would be during the HAE Association’s 2008 National Patient Conference and International Leadership Forum), which is very interesting. How your insurance will be billed may or may not be different (you all know who this game works).

Second, TheraCom/CVS/Caremark, my specialty pharmacy (and I believe the specialty pharmacy that covers the East Coast) is shown as a “Preferred Provider” under my plan (Blue Cross/Blue Shield Federal Employee Program for anyone else who has this same plan). This means that my co-pay was 25% in 2008 and will be 30% in 2009.

Third, the submitted charges were $55,575.00 for 12 doses (24 bottles) of Cinryze. This equates to an average of $4,630.00 per dose ($2,316.00 per 500IU bottle).

This means my co-pay for December should have been $13,893.75!! And my co-pay for January will be $16,672.50!!!

I’m so glad I didn’t know this 2 days before Christmas last year.


Two things saved me from utter financial ruin…

My catastrophic maximum and PSI.

My catastrophic maximum in 2008 was $4,500, against which I had already amassed costs of $1,800, leaving a gap of $2,700. This reduced my December co-pay from $13,894 to $2,700 (whew!), the full amount of which was covered by PSI. Note: PSI transfers their funds directly to the specialty pharmacy, you do not have to fiddle around with reimbursement (wayyy whew!) and so far PSI and TheraCom are working well together.

My catastrophic maximum in 2009 will be $5,000, against which I have not amassed any costs as of yet. Thus, my January co-pay will be reduced from $16,672 to $5,000 (another whew!), the full amount of which will be covered by PSI, and “as a result, no further calendar year deductible, prescription drug, deductible, coinsurance or copayment will apply for this patient for this calendar year” as stated on my EOB.

My advice: Research the catastrophic maximum for your insurance plan. Is there one? Is it yearly? Is it a lifetime cap? How much is it? Are there any restrictions? And don’t hesitate to ask your Cinryze Solutions case manager about applying for PSI assistance (remember that you must be nominated/sponsored/recommended for assistance through Cinryze Solutions). To read about Patient Services Incorporated (PSI is a non-profit premium and co-payment foundation) and their good works, check out their website at

The purpose of a fore-runner is to break through the worst barriers and pave a path for those who follow. I pray I am doing that and, as difficult as your journey seems now, please know I started mine almost a year ago as this process geared up and started development. Talk about fits and starts, backtracking and confusion, reversals and changeovers! I now have twelve case managers just for Cinryze, they’re all on speed dial, and we’re all on a very chatty, first name basis. Persevere, dear friends, because if Cinryze is right for you, it’s worth even the tiniest of frustrations!

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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