Question - Hereditary Angioedema

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Asked 7 years ago MS123 2027

Hi Everyone,

I'm trying to understand what it is like for people with HAE. Therefore, would you ever switch treatment? Why or why not? What happens if you lose insurance coverage? Are you still recieving treatment? Was there a time where you had to pay out of pocket for treatment?

 

Thanks!

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I am still seeking a treatment that will not only work but doesn't have blood clots as a possible side effect as I also have Antiphospholipid syndrome , factor V Leiden, and Antithromblin III along with the hereditary angioedema type II

Answered 7 years ago Sherry sturtevant 30
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Hi Sherry,

Have you given any thought to Ruconest or Berinert?

Thanks!

Answered 7 years ago MS123 2027
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As far as I know all of the IV HAE treatments have blood clots as a possible side effect. I have been on Berinert, Cinryze and Ruconest...  I am over weight, have a port and I smoke all of which are not recomended with those IV treatments as they can increase your risk for clots.  I have been on HAE meds for over 5 years, and I have not had any problems with clots at all. I have also been on Firazyr for the past 6 or 7 years, I do not think Firazyr carrys the risk of blood clots, so that may be an option for you.  I would talk to your doctor about your concerns and see what he/she thinks is the best option for you for treating your HAE attacks. 

Answered 7 years ago Liz Hunter 20
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As for the main question, I have been on just about all the HAE treatments, I have not wanted to change things around.. But in many cases my insurance forced me to.  It is alwasys a constant battle with insurance and these high cost drugs.  I have had times when I have been without coverage for my HAE meds and fortunately I was helped by the drug companies with some emergency doses to get me through those gaps.  There are also some charities that are able to help you out with out of pocket costs as well.  But I am sure it will always be a battle for us HAE patients.....  And if we need that extra stress of not knowing if we will have coverage or meds on hand when we need them..  All that does is cause us to swell more..  lol  

Answered 7 years ago Liz Hunter 20
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Hi Liz,

Are the insurance battles due to Obamacare/ACA? Are the policies for HAE changing every year within your insurance company?

Was there a program maximum for your co-pay while you were on Firazyr, Cinryze or Kalbitor?

If you don't feel comfortable responding, feel free to email me at [email protected].

Thanks!

Answered 7 years ago MS123 2027
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