I still don't know how much Fiona's treatments cost. I've heard wild estimates, but I'm still waiting to hear back from our supplier. Not being able to plan for the cost is stressful. The lowest estimate that I've heard is $1,200 a month, and the highest is $60,000.
Most people that we talk to about the expense of Hizentra say that we should check with the manufacturer, Behring to see if they offer an assistance program. They do, but only for people who are uninsured, or whose insurance companies don't cover the drug. I found a nonprofit that helps with copays, but their primary immune deficiency program is temporarily full.
I know this will be difficult. I know it will be a struggle to pay for treatments. I know that we will always have to fight for Fiona, but she's worth it! How many parents get to raise a unicorn?
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