It’s pretty safe to say that everyone knows that health care is expensive. The more chronic or serious your condition is the more expensive. These are vague thoughts though. No one near me other than parents of other children with mito truly know and understand fully just how expensive it is to deal with a child/adult that has mitochondrial disease.
Today I am going to try to give you a taste of what it is like. I have asked questions of the mito groups I am with about their costs, mileage, and medications. I will try to go middle of the road. Please understand depending on your situation you could be worse or better than the average that I am going to show you.
First lets just talk in general, what costs are involved with mitochondrial disease?
Health Care:
This is generally taken right out from your check. The cost can be hundreds of dollars a month. That depends on your job and what level of care your choose. We have found over the years that as much as we want to stay on the bottom tier, HMO. It is not possible given the specialists we need to see. First extra cost for mito is jumping up from the bottom health insurance tier to a higher more expensive one.
Now you may get your healthcare through the state or federal government with social security disability or the health care mandate. That doesn’t mean you aren’t still paying for it. You pay taxes. You pay the occasional overages that can take months if not years to work out. You get told ‘oh it’s no big deal you will be back paid’ but it is a big deal because I don’t have the money to fill the gas tank today.
It is also very common for hospitals and doctor’s offices to send your account along to a credit company. Now whether you are covered by a private insurance or state insurance you have to fight tooth and nail with a creditor for them to bill the right person. I was told by a creditor once that it is easier to bully a person into paying than it is to deal with an insurance company.
Copays:
Lower level copays– these are for primary care physicians (PCPs), generic medications, basic therapies (ALWAYS the first choice of healthcare programs. Some even demand you use the lowest tier and appeal any medication or specialist that is higher.)
Middle level copays- these are for specialists, specialized therapies, in home nursing care (depending on the insurance) and most other medications
High level copays- these are for urgent care runs, ER runs, hospitalizations, expensive medications or special formulas. I have seen a high copay only knock off a single dollar…. gee thanks.
The Mitochondrial cocktail:
This is a long list of supplements (here is the mito cocktail list from the UMDF.org at least 22 supplements! ) that doctors hope will improve mitochondrial function. If you have a specific deficiency in one of these often the insurance will cover that specific supplement. For the rest of us it is highly spotty as to whether our insurance will cover or not. Most insurance carriers will not because there is no scientifically solid evidence that these supplements work. (Another area we desperately need researchers to work in!)
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These are just two supplements that may family needs. I have to buy enough to give 6 people their doctor recommended doses and yet insurance in no way covers these and the other supplements.
Equipment:
There can be rental fees for everything from a wheelchair, walker, specialized seat for eating, cough assist vests, to ventilators, and pumps for IVs and feeding tubes. There are even simple and yet terribly important things like heated blankets (for those that cannot maintain their core temperature).
Don’t even get me started on the how expensive making modifications to your home for mobility and safety for your children can be. Check your neighborhood to see if there are community service groups that might help. When it comes down to it you will might get a very limited grant through your state for things like a wheelchair ramp. Don’t cheap out. Get a good solid contractor to help you with any home modifications.
In Home Care:
Some mito patients are bed bound or home bound if for no other reason then they can’t go out with such low immunity. That can mean you have to bring the medical help to you. This is usually covered under copays. There is one very expensive exception, babysitting. You have to have a very specialized babysitter to watch a child as medically fragile as a mito child can be. Some states have respite care that is free. Some charge you on a sliding scale as per your income. Others have such a limited respite care program it might as well not exist. I know in my state at the end of the fiscal year when things get tight at the state capital suddenly money from areas like special mobility, therapy, respite care, etc dries up. The politicians promise every year to be sure the evil other side doesn’t do that to us again next year. blah blah blah…
Going to the Doctor:
While most people only have to deal with a PCP and only rarely a specialist if at all. Mito patients talk more with their specialists then they do their PCP. The doctor appointments never stop. There are only a few places in the WORLD that can competently diagnosis, care for, and follow up mitochondrial patients. When I asked a large group of mito patients about how far did they have to go to see their specialist the answer was broken down into 2 groups.
1) Normal specialist covering basic systems but with mito knowledge 4-8 hours drive one way
2) The ‘Super’ specialist that is the mitochondrial lead doctor, or a doctor that is helping you with an unusual complications of mito like dysautonomia. Those were trip ranging from 8 hours-out of country! Many of these trip required airplane tickets. Hotel rooms for a day or two or more. Food for all those days. Rental or taxi fare for travel. Extra costs for deliveried medications like TPN and other IV needs while there.
*I had a box store charge me $75.00 for 3 boxes I picked up just hours after they were dropped off. It was my medication and TPN (IV nutrition) that the insurance had already paid the UPS to ship. Now they made me pay to pick it up. I had no choice. This was my food and medication that I needed to live. I was just lucky that I had a credit card to make it work.
Food:
Having mito can mean your body becomes so compromised you get a secondary disease, like secondary adrenal insufficiency or extreme food sensitivity. That would mean you have to change your entire diet and be incredibly strict about it. Perhaps you stomach has shut down or your bowels. The only ‘food’ you can have is a supplement. That might or might not be covered by your insurance. Even worse is if you cannot have any food by mouth and you have to have TPN which is completely given via IV. TPN is extraordinarily expensive! (about $7500 per month according to the Oley Foundation)
In Hospital:
Recently hospitals have been sneaking in fees that hit us while we are down.
-parking fees-There are still some hospitals that are kind enough to waive or give a set fee while in patient but those hospitals are becoming less and less. You then end up paying the per day fees.
-television fees- To use the television in many hospitals you now have to pay a $5 a day fee. In cash while there or it’s turned off.
-parent’s meal- It used to be that one parent could accompany a child and get a basic free meal. Not any more, $3-5 per meal.
-sitting service- While a young child is in the hospital they cannot be left alone, even for you to slip out and nap or shower. Hospitals used to let nurses aides sit with your child as you did that. Now in many hospitals you have to pay for a in house babysitter to come and watch your child. Rates very greatly.
That was just a warm up. Here is a typical specialist run. This is considering a middle level insurance carrier and that you didn’t stack appointments on one day.
Pulmonologist Appointment: non-urgent
Copay-$35
Lab draw fee-$20
Medication copays (2 medications)- $55
Rental, cough assist vest- $15 a month
Gas to specialist- (12 hours total run)(.51 cents a mile as per federal gov.) a startling $771!
Hotel for 1 night (if you can get in a Ronald McDonald House YEAH! very low cost) If not about $100
Food 4 meals out about $100
TOTAL for a specialist run: $1096 (that does not include the time you or your husband had to take from work)
Yes, there are ways to cut corners. Sometimes you can sometimes you can’t. A lot depends on did you have a heads up that you were heading to the hospital, or specialist appointment? Can you put more than one dr appointment on one day so you get as many done on one trip as possible (remember you will have to pay for copays for each appointment)? There are times it is all you can do to get the breathing kit, anti-seizure meds, pillows to prop up your low tone child/adult, extra clothing in case they throw up from some test…..etc. into the car and go?
I sometimes think that simply going to the doctor’s and getting there on time should have a medal!
I am writing this not for your pity. More understanding and empathy… When the girls get together for a coffee and I say no. I am tallying in my head how much the gas would cost and the coffee and do I have to pay someone to watch my child while I take an hour breather with my friends. Soon you quit asking and I quit even trying because the road of mito just gets tougher and tougher.
Please understand that mito families do the very best with what they have to deal with. Finances are not a pleasant nor popular topic but all mito families are stressed by finances. I hope this gives you a better idea what mito families deal with.