If there was one thing I could say that has been the most frustrating in Nicky’s life with EB when he was younger was dealing with bandages.
There was the issue of the cost, where to get them, insurance coverage, what to use, how to wrap, trial and error, the list goes on and on. There was not one place in particular I could go for answers either. Different forms of EB’s wounds react differently depending on what wound products one uses, so if the person suggesting something was dealing with a different form of EB, I learned the hard way (at Nicky’s expense nonetheless) that I had to take that information with a grain of salt. The whole thing was just nightmarish. Who wants their child to be their own guinea pig?
When I look at photos of Nicky when he was little I cringe. Oh… dear… God. Why wasn’t I wrapping his hands? Was I really covering a nasty wound with a little vaseline gauze and cover with rolled gauze? Was I really expecting it not to get stuck? Why was I not using more ointments?
It’s so easy to judge myself, but the truth is, at the time I did the best I could with the little information I had and little to no bandages available to me. It wasn’t until Nicky was 9 months old, at our first Stanford appointment, that Dr. McGuire showed me the curled index finger on his right hand which could no longer straighten. 9 fricking months old. I did not even know this was a possibility. No clue. I had no idea hands clubbed. Not only that, bandages were so expensive it threw us into bankruptcy court within a year. It was just fantastic.
There was no learning curve for us, EB hit us right away like a ton of bricks, and Insurance companies refused to pay for bandages for 12 years until National Rehab got involved. For many years to come we survived on donated bandages or, worse, washed and re-used bandages. Doctors frowned at that, but my credit was ruined and I had no money. When we moved to California in 2001, when Nicky was 4 years old, I had gotten CCS (California Children Services) to foot the bill for the bandages, which followed an 18 month span where Aetna for whatever reason decided to cover bandages and then we were forced to change insurance company so that was that. This issue of bandages was a nightmare, one that was solved only once National Rehab got involved.
I cannot sing National Rehab‘s praises enough. If you are dealing with EB and have insurance, contact them right away. I am as serious as a heart attack. Do it NOW. Talk to Bill. Not only they’ve got us covered, but they also wave the 30% co-pay for us and all EB families. I know for a fact we could not afford to pay 30% of Nicky’s bandages, let alone 100%. Nicky’s life depends on bandages. Until there is a full-fledge cure, bandages are key and nobody can afford this stuff. I don’t even dare look at the bill each month. I know it’s in the thousands. THOUSANDS! It’s insane.
I am not one to complain, but my story needs to be told. This is a HUGE problem, one I know too many families are still dealing with this, whose insurance refuses to pay for bandages. I don’t know what the answer to this problem is, but since I know the US is hell bent in only having for-profit care, Insurances need to realize or be forced to realize that bandages for an EB patient are not a “luxury” but a “necessity”.
I had started a Wound Care Bill petition in 2006 and it never got the 10,000 signatures needed to be presented to Congress. It’s a damn shame. Do you know of a congressman with a heart? Let me know.
Our children suffer tremendously. Is it too much to ask for insurance companies to get supplies to keep them infection free and their skin protected? Sometimes I wonder…
Blessings, Love & Light,