Patient Perspective

There was a a brief period in January when my medication, Cinryze, had not been approved by my new insurance provider.  Shire One Path sent me a complimentary dose until my regular pharmacy got approval.  I only needed that service once.  Shire One Path is always amazingly helpful.  They help make the process of receiving meds so much easier.  They also pay the copay for my medication, as well as my 2 daughters, until our deductibles have been met.

PSI is another organization that has been a godsend to our family.  We are enrolled in their premium assistance program.

HAEA is also extremely helpful in providing information about HAE and offering peer support through conferences and online chat.

I was infusing Cinryze up until I had a bacteria grow in my port .Had the port removed due to the bacteria and also due to having factor V Leiden mutation and antithromblin III defiency and Antiphospholipid syndrome all of which can cause blood clots, I have already had 2 arterial clots and not wanting to go through that again I decided not to infuse....As is now there really isn't anything that I can do as all the treatments have a clotting risk..

Hi Debbie,

It's good to know you have assistance for your treatment and OnePath is always helpful! Do you prefer certain services over another in OnePath or Shire? Once your deductible is met, do you not have a co-pay, because I assumed patients always have a co-pay? What happens if you don't have insurance-can you receive still receive benefits? Have you or would you try other treatments, such as Berinert? Also, do you know what the rare disease charitable program is within Shire?

Thank You

Hi Sherry,

I'm sorry to hear that. Does this mean you're not any treatment or taking another medication? Have you or would you try treatments other than Cinryze, such as Berinert?

Thank You!