Until it Happens to YOU!

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The other day I was perusing the ‘EB news’ of the day and I ran across an article of a family whose insurance did not pay for bandages (shocking, I know!) and the family resorted to get their supplies from a state program for children with disabilities which picks up expenses, usually outrageous, when the family cannot afford them. When the state was taking their sweet time approving the bandages and the family ran out, they were scared and upset, and understandably so. They contacted the news station to get their help, the state got pressured to approve and within days everything was all better.  Let’s face it, until it happens to YOU, you will never quite grasp how expensive and stressful it is to have a sick child. Never.

The comments under this article were quite disconcerting, but the one that got my attention was the one that stated how the “two ‘able bodies’ parents should go to work and pay for these bandages and not rely on the taxpayers to foot the bill”.

Insert vomit sound here.

Apparently this “person” is vastly ignorant about the significant expense of bandages (thousands of dollars a month) and relies on the talking points of those who could not care less about the misfortune of others and do not bother researching what exactly this family’s needs are and what they are going through. I can’t say I am surprised. I’ve had to deal with this kind of ignorance since Nicky was born when my insurance did not pay for bandages and there was no state program that covered them either.

tumblr_m7o7r1vxvA1qcn3oqo1_500Let me explain things for those that are willing to learn more about the plight of bandages for EB patients: they are as important as Diabetes’ patients supplies and chemotherapy treatments for cancer patients. They are VITAL. It’s the only treatment available for EB wounds. Period.
Should these supplies/bandages be covered by insurance? YES!!! The reason why we purchase an Insurance Plan is so our Health Care Bills are taken care of. Families with an EB patient only have ONE treatment for their condition: cover the chronic wounds with ointments and bandages. Unfortunately these supplies are outrageously expensive, which family can afford to pay $3-10,000 a month for bandages may I ask