The cost of rare disease

Rare Disease Day is just a few days away, and I finally got the statement for Corrigan’s December hospitalization, so I thought that I would share with you what rare disease would have cost us last year had we not had health insurance.

I will just go ahead and stick this here…

hopkins costs 2013

(All four statements are only from Hopkins. The first line on each statement is Room and Board. Red arrows indicate pharmacy costs)

Did you fall off of your chair? You probably didn’t if you have a loved one with a complex medical issue. You’re darn lucky if you don’t.

Corrigan was hospitalized three times last year.  Two of those times he was transported by helicopter to Baltimore and the third time we took an ambulance. It is my understanding that Maryland Medevac does not bill patients for transport, however none of Corrigan’s transports were Medevac last year.  I’m told those flights are well over the $6000.00 range.  Connor’s ambulance ride, in which we did get a bill, was $1400.00 and the driver got lost in the middle of Baltimore, at midnight.  Good times.

The cost of those transports are not included in the above totals (photo).  Nor are the costs incurred for the local Emergency Room visits for each event, or any fees from our local hospital. Connor spent 2 days admitted locally before being transported to Baltimore and Corrigan, during one of the above hospitalizations, stayed locally for less than 30 hours before he deteriorated rapidly and had to be rushed out of town.   I included the cost for Connor’s 8-day admission for comparison. Connor does not have a Urea Cycle Disorder and is normally very healthy. Obviously Corrigan is a lot more expensive that Connor when it comes to medical care. Can you imagine if we were not insured?

Corrigan has needed rescue intervention nineteen times now in his almost-6 years on this planet.

The red arrows show the bulk of the bill comes from pharmacy costs.  Corrigan’s rescue meds are crazy expensive and depending on how many bags of Ammonul he needs per visit, the pharmacy bill varies. You can see that his four day pharmacy bill was far more than even his seven day stay last summer.  I didn’t keep detailed notes, but sometimes his ammonia will come back up after being lowered by the rescue bolus and he needs another day or so of that medicine, perhaps that is the reason for the difference in cost. Or maybe the price increased in the meantime, I don’t know.  Aside from his rescue medicine and the arginine that is mixed in that cocktail, and bags of D10, Corrigan requires nothing else from the hospital pharmacy.  In fact, neither our local hospital or Johns Hopkins (at the time) had his daily medicine (Ravicti)  in stock, so I have to bring my own medicine from home to administer once rescue meds are ceased.

That daily medicine is another huge cost per year.  Because it is an Orphan Drug (learn more here) the cost for each patient is said to be in the 250K-290K range.  PER YEAR.  Even if I do the calculations based on a low-ball number, say a much more reasonable (ha!) 200K a year, for Corrigan that comes to about $555.00 a DAY, or $138.00 for 2 tiny ml’s of medicine.  For reference, a teaspoon is ~5ml.  Who could afford that?

Urea Cycle Disorder patients often require low-protein medical foods and those products are insanely expensive.  A box of medical spaghetti is $10.99 a box.  A small loaf of medical bread, just 16 slices, is now $12.99.  Add in his feeding tube supplies, special order metabolic formula, 21 cans of Pediasure a week and his arginine, and our family would have long been bankrupt. My boys and their Baltimore travels would have cost this family more than $133,000.00 in 2013 alone.    There are clinic visits and port flush appointments, GI appointments and Mic-Key button replacement costs.  We spend hundreds and hundreds of dollars a year on gas driving nearly 3 hours, one way, to his team- and there are missed days of work in which there are no sick days, or paid days off.

It wouldn’t be a stretch to assume that Corrigan’s care, just treating his disorder with diet and medicine, and providing rescue treatment during crisis and not transplant, would be in the million dollar+ range.  That’s mind-boggling considering he hasn’t had any major surgeries (just procedures; g-tube and medical port) and does not require daily skilled-nursing care. There are many other disorders that cost five times more than Corrigan’s and many of the costs that those families incur are absolutely out-of-pocket.

I’m so so so thankful for medical insurance and assistance from various programs.  I’m also beyond thankful that modern medicine exists in the first place, for surely we would have not had this much time with our rare little boy otherwise.  It is expensive, but absolutely worth it.

3 thoughts on “The cost of rare disease

  1. Pingback: A really long, really overdue “thank you” post. | Mooney=MC2

  2. That is just scary. As much as I understand the costs and coverage, but how can a person with out the insurance possibly afford that…


    • I can’t imagine anyone could, at least not for long. It is ridiculous that the treatments cost so much in the first place but I suppose when the disorder population is so small, that is how they make the money, but it’s still outrageous.


Your comments are appreciated!

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s