I found out last summer that I have an incredibly rare – 3 in a million – tumor in my abdomen called a desmoid tumor. Some people call it “benign” because it doesn’t metastasize, but it can be very locally aggressive.
I was told to be prepared for a “marathon, not a sprint” for treatment. My tumor can’t be surgically removed so I started taking a daily oral chemo drug last October. No one knows how long it will take or if the tumor will respond to chemo.
I have great insurance coverage through my husband’s employer, so I haven’t spent anything out of pocket for the drug since we have already met our deductible.
Without insurance, the oral chemo drug can cost more than $80,000 a year. Add that to the CT scans, consults with specialists, and most likely the other expensive medications such as IV chemo, the cost of treatment adds up quickly.
I’m incredibly worried about the possibility of meeting lifetime coverage caps if that part of the ACA is repealed. The amount of pressure on my husband to ensure he stays in his current job and that we never lose coverage for long enough for it to be declared a pre-existing condition is unbelievable.
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