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Cost of interferon treatment options My name is Julie. I am new to this forum. My 15 y/o nephew was diagnosed with CGD last month after a lifetime of serious illness with what had been dx as Crohn's. We now know he has CGD so at least he will be getting on the right tx plan. (We do not know what type, the initial test results are confusing and inconclusive so the family will undergo further testing in two weeks. At first we thought it was X linked, but now perhaps looking autosomal rec.) My question is about the best way to proceed for payment of the necessary interferon tx. The insurance company policy says they pay all of the costs of tx after deductible. But the ins co says they will only pay for 60% of the interferon. Will the family have to hire a lawyer to fight this battle? Is Soc Sec disability a better way to go? Will medicare pay for interferon? Or NIH clinical trials? Will they pay for the interferon? Thank you for any information and advice! Julie
Submitted by Julie Gan on Sun, 2007-11-11 16:35. categories [ Medication and Treatment ]
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Your information is very helpful and I will pass it on to my brother. He is a bit overwhelmed at the moment and I am trying to make things easier for him by gathering information. This has hit us hard and the CGD forum has been a lifeline of information and calming news! Thanks again Lizz, and my best to you and your little guy, he is a cutie! Julie |
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Hey Julie,
My son was diagnosed just over 4 years ago at 7 mths, with x-linked CGD. We had health ins for him and they refused to pay, our doc sent a threatening letter to them and they quickly paid for it. But we decided under doctors encouragement to apply for SSI. After a 2 1/2 year fight and hiring a lawyer we won, so now he gets state medicaid. This works great for us, because of his medical history I don't have to worry how are we going to pay the medical bills, and daily meds I only worry about him recovering. Once he turns 18 this will all change as he will not be a child, we will have to reapply for him as an adult, I am a little concerned because I am not sure what the criteria will be, but that's 10 plus years down the road and maybe SS will be different. I hope this opens up your family's options and I hope the best to you guys.. Lizz Kirk