The Cost of Medical Care

The Cost of Medical Care is many-fold isn't it? It's not just what you shell out of your bank account. It's the hours and hours spent working with billing offices and insurance companies and third party advocates. It's the upset stomach and splitting headache when you take another call from another physician's office asking for another evaluation for your child or your spouse or you and knowing that you have to put on your boxing gloves and head to the mattresses. It's hours and hours and days and days of missed work to shuttle your child, spouse or you to the appointments they have.

Our youngest child has two rare bone diseases. One of them affects her metabolic system as well as her bones. This disease is called hypophosphatasia. We have learned about it little by little because it is very rare. Mostly what we have learned has been anecdotal from the amazing patient community who so willingly shares their experiences with the disease and the burgeoning treatments.

Segunda went through stretching casts for hands and feet for months. She spent several days at Shriner's Hospital in St. Louis to learn more about her disease. She went through Achilles lengthening surgery. She went through physical therapy. She went through 6 teeth falling out and a 7th on the way and she isn't even 4 years old yet. She went through speech therapy because of those missing teeth and sounds she has a hard time making in the back of her mouth. I fought to get speech therapy covered for a year and multiple appeals and review boards. She has had to catch up developmentally with her alphabet, counting, colors, shapes. Most recently she started an injection called Strensiq. This is a $100,000/year drug for someone her size. Imagine how delighted the insurance company is to cover it. It's life-changing.

She is seeing a pediatrician, an orthopedic surgeon, an endocrinologist, a speech therapist and is followed closely by her case manager at Alexion Pharmaceuticals. Her progress is breathtaking. If you have followed this blog, you know that already.

She cannot eat dairy, sugar or consume more than 300mg of calcium a day. Her reaction to sugar is headaches and vomiting. Which means she also needs to stay away from unbalanced carbs. What three-year-old do you know who doesn't like carbs. That's all they eat. So now we carefully watch everything she puts in her mouth. She's been tested for celiac and diabetes. She has neither. We suspect it's hypoglycemia and will discuss it with her pediatrician complete with meticulously kept food diary.We will be adding a nutritionist to our list of medical professionals. And fighting insurance to cover it because we don't know how to properly feed a hypoglycemic who can't have calcium or dairy thank you very much.

Her endocrinologist called me this week and said that they want her to have a gait and movement analysis completed through Children's Hospital. Cha-ching cha-ching. So, I dutifully called the Center and learned the cost is $6,000 and immediately began the fight. How do we get this covered? What do we have to do? The Center said that the insurance company won't touch it. Although a gait and movement analysis would be very beneficial for her. Her gait is anything but typical. She compensates for her weak bones and walks with a bow-legged scamper. She looks like a cowboy in a frightful hurry. It's the cutest thing you ever saw.

So, today, the Center called me back with a solution. We will do a partial analysis and they gave me the billing code. I called the insurance company and wrote down the person's name, the ORS number (recording number) and made them triple check that this was covered and that the provider was covered. It is. But I'm ready for the a fight if it comes to that.

Dealing with medical issues and their costs is a full-time job. I already have one of those. This child has a congenital, metabolic, bone disorder. Her entire system is impacted. I should not have to justify any of her care and yet I have to justify all of it. Insurance in the United States is broken. It should not require this degree of work and tenacity to get anything done concerning the welfare of anyone's child. If my child's medical providers deem a procedure, an evaluation, a test, a medication, a program necessary, then it's necessary and no flunky in an insurance company can justify that it isn't ... but they can choose not to pay for it in spite of the premiums we shell out month after month, in spite of the co-pays we pay at each and every visit, in spite of the doctor's many letters of medical necessity. The system must change. And when it does, we will have a healthier nation as a result.