It seems as if all people see, when they come in contact with a child with EB, is gauze. Some wonder if the patient has been into an accident or a fire, others fear it’s contagious: “what happened?” is a common question tossed around, but most just look dumbfounded, not being able to formulate a thought or a question. It’s OK, we get used to it, we all get used to it, eventually. So much so I barely notice it anymore, and my son does not notice it at all. This is not something we see every day. After all, EB is rare. Very rare.
However, I wonder if people know where those bandages come from. Does that cross their mind? Do they also wonder how much they cost? How long and painful bandage changes are?
I wanted to tell a short version of my story as it relates to bandages, because I feel it needs to be told. The “no details left unsaid” version will be part of the book I am currently writing about my son’s life.
To say Bandages are expensive is the absolute understatement of the year. This is a photo of how many bandages it takes to do a whole body change, which we do approximately every 3 days. What we are doing currently is splitting it up in three portions and do a portion of the body every night. It takes about 2 hours each night, if we were to do a whole bath/bandage change, it would take us anywhere between 6-8 hours.
As this photo shows, there are 25 Xeroforms, 8 Vaseline Gauze, 1 bag of Webril, 7 Polymem, 2 Coban, 9 4″ gauze, 2 2″ gauze, 2 1″ gauze, 1 jar of Alwyn cream, 1 pair of tubifast socks, 5 Mepilex, 2 Mepilex Heel, 2 Mepilex Transfer, and then Surgilast cut for his arms, legs & thighs, Baby Oil in case there is anything stuck, tea tree oil, Pain Medication and Miracle Mist to spray on the Polymem so it’s not so dry. Scissors and Needles of course are par for the course. I also use oils, namely Argan and Coconut oil to massage his hands with which I did not include in this list. We constantly change what we use, but this is what we use now. Cost? Astronomical… just to name a few, the Xeroform alone is over $65, it’s $35 for the Polymem, the Mepilex is $165!! Just google ‘Wound Care Supply’ store and you can figure it out. It’s thousands of dollars every week worth of bandages. What family can afford this? The best option anybody has to not spend this amount of money is to visit these pain management doctors dallas.
The answer to the main question which is surely twirling in your head is… YES. Our insurance, thankfully, pays for his bandages right now… but I am always waiting for the shoe to drop. You see, my son is nearly 16 years old, and the insurance only started paying for his wound care supplies 3 years ago. Before then a program for children in California called CCS covered most of it for several years, although I must state that for them to cover the bandages, I had to get a letter of denial from the insurance every year. You would think it would be a simple thing to get, but there are years that I went 3 months… 3 months without bandages WAITING for this letter that the insurance kept telling me was ‘in the mail’. Infuriating? You bet. I wrote letter upon letter, sent photos upon photos to the HMO commissioner in Sacramento, and they would always write me back telling me ‘They don’t have to pay’. Our argument that bandages for Nicky were not a ‘temporary thing’ but the ONLY treatment for EB went on deaf years over and over again. The state of Arizona though, which is where Nicky was born, had no such programs, we would end up putting the bandages on credit cards, and it wasn’t only the bandages. We had co-pays out to wazoo because Nicky was always visiting a different specialist and ended up needing physical and occupational therapy twice a week each at $30 a pop… since I had to quit my job to take care of Nicky full time, we drowned. Nicky was a little over a year old when I had to declare bankruptcy.
Without credit and without bandages, after the bankruptcy we survived using bandages donated to us from other parents, who sent us their overstock, and I made them last by washing and reusing them endlessly, even things they told us could not be reused or rewashed. I would let bandages soak in bleach for a day or so, wash them, re-roll or have them dry in a clean spot etc. Then on occasion we would get a big shipment from a parent’s whose EB child had died.
The saddest thing about this whole story? It’s a US only problem. Through the Internet I have met families with EB children all over the world, and, save for those families that live in third world countries which I can’t speak to so I am not sure how they survive, supplies were never denied elsewhere. Not a single patient I have met that lives in New Zealand, Australia, Canada, the European Union or even South Africa, was ever denied bandages. I am Italian, and if Nicky had been born in Italy, he would have had all the supplies he needed from day 1, and a visiting nurse twice a week. A visiting nurse? Save for the first 4 weeks of Nicky’s life, where a nurse came by once a week, I never, ever, got a visiting nurse again… and, I’ve asked! I remember once when Nicky was 3 months old, colicky, full of wounds, I was going out of my mind. I called the pediatrician’s office in tears asking for help. Did I get it? No.
I am not one to complain, but my story needs to be told. I don’t know what the answer to this problem is, but since I know the US is hell bent in not having real Health Care, only 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”. Bandages are also not a luxury for many other conditions and situations, we’re not talking about your run of the mill scrape or bump, we’re talking about ulcers the elderly get, and many other conditions they get, so is important they are taken care of in centers like the residential care homes in salisbury and many others.
If you know of any Congressman with a HEART, please refer them to the Bill below, we need all the help we can get!
HELP by signing the WOUND CARE BILL PETITION Now!!
Mom to 3 boys, 1 in heaven, 2 on earth. My first son Alex (whose demise is most likely EB related) was stillborn at full term. After a miscarriage, I had my second son Nicky, who has the Recessive Dystrophic form of Epidermolysis Bullosa. My youngest son, Connor, is 100% healthy, and I never, ever take it for granted. I am an author, photographer, graphic artist, webmaster, blogger and more.
