Managing health insurance and deductibles with SM

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Living with systemic mastocytosis means dealing with high deductibles for health insurance when Jan. 1 arrives.
Why doesn't health insurance cover everything we need to treat our SM?

It is almost the new year. While I love the winter, it makes me dread that Jan. 1 is right around the corner. Living with indolent systemic mastocytosis (SM), I frequent the emergency room. I also have numerous doctors’ visits and procedures. This all means that with my insurance, the out-of-pocket expenses start over at the new year.

We pay so much money for our health insurance. I am sure we all pay lots of money to the insurance companies. How does it still cost so much to seek medical help? I am not looking forward to starting all over again next year with deductibles. 

Systemic mastocytosis (SM) is a rare hematological disease characterized by mast cells that are overactive and accumulate in different parts of the body such as the bone marrow, liver, spleen, gastrointestinal tract and lymph nodes.

Drug costs are also high for me since I am on so many medications. My husband also needs surgery on his neck, a cervical fusion. There is no possible way we can cover our part of the out-of-pocket expense. 

Read more about SM therapies

It will cost us even more if we miss having it done before 2025 rolls around. I wonder how many people with health problems are not getting their medical needs met because of insurance costs or not having health insurance. Times are tough right now on everyone, with the cost of living so high. When I travel to other countries, I hear about how their health care is free. 

In Scotland, it costs zero to visit a doctor, and prescriptions also cost the patient nothing. Everyone in Scotland gets free health care. Canada has a great health care system, and so does England. This is all based on the British National Health Service. I realize it’s funded through taxation, but I wouldn’t mind paying a tax if we could have something similar. I just don’t understand why our medicines and health care have to cost so much. 

I am also a diabetic. I wore a Dexcom for more than four years to monitor my blood sugar. It saved my life more than once. It would send an alarm to my husband if there was a problem. He changed jobs but still had the same health insurance. On our old health care plan, this was free for me. When I ordered my Dexcom after the change, I told them that our insurance had switched. They did not tell me that there would be a cost. I got the bill, and it was for more than $1.000. I was shocked.

I do not wear the Dexcom anymore, and it almost cost me my life. My husband came home from work and found me on the bathroom floor in diabetic keto acidosis. Had I been on my monitor, he would have been alerted and the crisis avoided. Instead, I was in the hospital for days. 

I just wish that there was a way that all of us could meet our health care needs without going into debt or going without. I realize it would be impossible here, but a girl can always dream of a better future for our children and grandchildren.