Cure Alveolar Soft Part Sarcoma International (iCureASPS)

Another thing I should mention is that even those of us with good insurance may have to look carefully at the fine print. Almost all plans have a lifetime maximum - something to be aware of because scans are often the way we tell this cancer has spread, and our kids can have repeated surgeries and lifelong monitoring.

As a neurologist, I know PET scans can sometimes be denied, so when the PET was planned, I muttered something about this at our first meeting with our oncologist, and he said, "Oh, that's a good thought. We'll put you on our sarcoma grant for PET - that way you won't have to pay for them on your insurance." In this situation, I think it was important we had gotten on the grant for are baseline PET and before treatment was started.

Also re: tax deductions, print out and read the 502 booklet http://www.irs.gov/pub/irs-pdf/p502.pdf
We are keeping track of gas mileage (18 cents per mile), plane flights, parking, insurance copays, prescription costs, and some families plan for additional dental or medical in a given year if they know it will help them meet their 7.5%. If you are staying in a hotel, you can deduct up to $50 per night.

I want to share my "lessons learned" from almost five years of working this angle. An important distinction is that we live in the United States and that we reside in one state and my son gets medical care from Memorial Sloan Kettering which is another state. We always select a "national account" for insurance. This allows us to obtain medical care anywhere in the US, specifically MSK and also Dana Farber (keeping our options open), without a referral. This type of insurance is more expensive, but totally worth it. We just need to stay within the "network" of doctors and hospitals. We also have Medicare as a secondary insurance. I was very, very surprised that my son was eligible (lots of paperwork). The deciding criteria for Medicare in our state is that he has a chronic condition, not household income. This secondary insurance is valid only in our home state. There is a local hospital that we have visited too many times to count, and this is when this secondary insurance is used.

The mention of an insurance policy life-time maximum...our insurance is one million per person. Also, there is fine print about going above the usual and customary treatment. If you do you must pay out of pocket.

I have also spoken with the insurance person at MSK and a point he made was that my son should never be without private insurance (this is not Medicare). Even if he needs to get an inexpensive "college student HMO" policy. Apparently if private insurance coverage is ever interrupted, a new policy may make him wait for almost one year before the insurance company will pay for any treatment of a pre-existing condition.

Also, when my son was first diagnosed, MSK was the third hospital we went to for an opinion. We went as a New Patient, not a second opinion.
I believe that if a doctor is to give a "second opinion," the answer will probably support the first doctor's opinion. I am not suggesting that all doctors do this, but I think there is more freedom of medical opinion if a doctor does not need to "justify/challenge" another doctor's recommendation.

And as far as tax savings, we use a Medical Flex Spending Account for processing our out-of-pocket payments.

Best wishes,
Elaine