I ran into a gentleman over the 4th and we presumed to talk about Trey's diagnosis, and he asked me a simple question that I don't know the answer to..."What are the medical charges associated to having a child with Duchenne's in a 20 year span..."  Does anyone know the answer to this?

 

This is the first time he had ever heard of Duchenne's and although I was trying to get him to make a rather large donation to a 'Cure', it appears he wants all the information available he can get and potentially wants to help a family or two that are struggling.  We don't need the help as the Navy is taking care of us, but want to get this information over to him ASAP so if his heart is telling him to help a family maybe it could be someone on here that really needs it...

 

His big concern was insurance is 'difficult' nowadays, what happens when a family (like us) don't qualify for Medicaid or SSDI and insurance won't pick up the tab...how much does it hurt families financially...

 

Any thoughts would be great, I have searched the internet and can't seem to find anything!

 

Cori

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OOOps I didn't mean to post this in the research...
I am not sure where, but there was a discussion like this either early on in this forum or in the old one. Call Kimberly at PPMD, she may know or remember. If you find it, post the answer! I would love to know it!
This would be good to know! Nicolas is only 8 and since diagnosis, I've spent about $1200 per year for his doctor's visit (he goes to Cinci to see Dr. Wong), and that's with insurance. Then I also have him on Deflazacort and that's anywhere between $500 to $600 per year - no insurance for that. We purchased a stroller wheel chair and that cost almost $2000 without insurance. I only had to pay a fraction of that. I know expenses will definitely go up with a power chair, cough assist machine, and for his assistance with breathing machine when he gets older. Not to mention, we will have to get an at home care for assistance with bathing, etc. It all adds up doesn't it?
Cori,

There is also the consideration of things that insurance doesn't cover -- shower chairs, new vans, home modifications. These things aren't just niceties, they are necessary to function with this disease. We just spent $2,500 on a shower chair, and then had to spend another $250 to get a travel one to go to Denver. When Jon got his power chair we had to put a ramp on our house, my hubby did most of the work, but still it was an investment. We also had to buy a new van, over $60,000. Fortunately we are in a position to be able to afford these things without too much stress on our budget, my husband has planned ahead somewhat. But a lot of people aren't and need help to be able to function in life.

Jon qualified for SSI once he was 18 and they didn't consider our income. He isn't on Medicaid as my husband's insurance still covers him until 22, and then my understanding is because of his disability they still have to cover him.

Just some other thoughts.
Susan
Well lets just hope someone knows the answer to this =)...I know we would all rather not deal with this, but it is reality, isn't it? And yes it bites!

I guess I worded this wrong...medical charges including wheelchairs, bath seats, special bathroom/home modificatons, ramps, AFO's, etc...Medical care INCLUDING everything the typical boy and boys family would need to make the child 'comfortable' medically...

We are a Navy family and for this we are unbelievably fortunate and the military really takes care of their 'ill children'...we never see bills, and they are proactive in helping us and giving us the best of the best. For example, his moonboots are custom, but also top line costing more then $7000, when we got Trey's diagnosis they "force moved" us into a handicap accessible home (we move so often we haven't bought another home), they pay for OT/PT 2x week, he sees his neurologist every 2 months, orthopedist every 3 months, etc, I know our insurance has paid out a tremendous amount yet it is billed differently...but on the other end we are SO stuck! It is always difficult to see Seth leave and not know what he is going to come back to in a 9 month time period...but also so difficult to know that regardless of the situation Seth couldn't get out if he wanted to...

But that is all off subject, I just can't imagine not having our insurance and think that if this guy wants to help pay for some medical bills, provide a wheelchair (or 2), or help a family financially with some rennovations we owe it to him to get an average number...

Hugs to all, Cori
This is a really good blog post I remember reading a while back. She estimated that her family and taxpayers spent $2.4 million over three years caring for her son who was 25 at the time.

http://genmedlabmom.blogspot.com/2008/06/cost-of-care-24m-in-three-...
Hello Cori,

I did an analysis for an NIH meeting several years ago for this very topic. My figures are fairly good estimates based on family experience and calculations of equipment, home modifications, clinical care, lost wages and in home care. For twenty years my total is $1,666,030.00 (One million six hundred sixty-six thousand and thirty dollars.). Figures are based on all expenses both out of pocket and covered either by private or other insurance.

Brian Denger
Is this for 2 boys Brian or per patient?

Brian Denger said:
Hello Cori,

I did an analysis for an NIH meeting several years ago for this very topic. My figures are fairly good estimates based on family experience and calculations of equipment, home modifications, clinical care, lost wages and in home care. For twenty years my total is $1,666,030.00 (One million six hundred sixty-six thousand and thirty dollars.). Figures are based on all expenses both out of pocket and covered either by private or other insurance.

Brian Denger
Hi Ofelia,

This was based on a per patient rate. Making educated assumptions for necessary equipment, surgery, care, home modifications, loss of income and other factors you can seen it is quite expensive. I would say looking at the numbers and data it was a conservative estimate.

Brian
THANK YOU SO MUCH!!! I will pass the information along =), thank you all for being so helpful when I needed it!

Cori
Hi Cori.....

What a great person and how authentic he must be to want to genuinely know more about the cause he is considering supporting.

Funnily enough, my husband and I are faced with these same issues at this moment in time. We relocated back to the US a month ago after having lived overseas for the past 10 years with my husband's employer. After Saij's diagnosis and watching him weaken day by day we decided to move back to offer him better quality medical care and to provide him with an environment of support and awareness rather than fear and ignorance and to be with our family and friends. My husband left his job so that we could focus on settling down smoothly and helping our family transition to our new surroundings. What we didn't consider at first was the huge expenses that would start piling up as a result of trying to get Saij the best of everything available.

Saij will be 8 next month and is not walking or standing as of a month ago. It came as a shock to us as all my research led me to believe kids stay amubulatory until their early teens. None of us were ready for this and it has been an overwhelming realization of how his day to day needs have suddenly changed. So now....not only are we consulting with doctors at the best institutions in the country to find out why Saij has lost his ambulation so early and if there is something we can do to slow it down from here....ie: change his steroids or physical therapy regime, add more supplements, etc but we must consider equipment to help him get around....ie: power chair (anywhere from $10k -$30k depending on how powered vs manual you get it), heavy load stroller ($1000-$2500), standing frame ($600-$800), plus the cost of physical therapy (which in my case has been prescribed for 5 times a week ($75 a session), doctor's visits and as we all know there are so many other related costs for the care of physically challenged kids.

We do not have any health insurance as my husband is no longer working for a company and it seems that we are not eligible for any other state or federal funding programs because of 'income level', measured by asset and savings. The ironic thing is that at this rate we will quickly deplete our savings and have no assets while trying to take care of all his medical needs.

Leading up to your initial question, I don't have a dollar amount to share but the costs would be astronomical over a 20 year span......of course, every child's progression is different and would need devices at different times in their lives but keeping in mind this condition is progressive....the weakness and loss of muscle only deteriorates over time.

I hope this has been helpful....

Vicky
Well, hard to put a dollar amount.. but just tell him it costs an Arm and a Leg..( well and then some)... lol!

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