Parade Magazine was asking for comments to be sent to Congress about healthcare in the US. Here are mine:
Gross imbalance between cost of illness and research funding
A million Americans suffer from Chronic Fatigue Syndrome, known as Myalgic Encephalomyelitis in the rest of the English-speaking world. The symptoms are very similar to MS, and some researchers believe the same virus is implicated in both conditions. CFS affects more than twice as many people as MS.
A very conservative estimate is that CFS costs the US economy over $9B a year. Yet, only about $6M a year is devoted to research that might get these million patients back to productive work.
If only 1% of the lost productivity were budgeted to finding a viable treatment/cure for CFS, far more than that investment would be repaid in taxes when that million people return to productive work.
I have been told that because I wasn't given effective treatment promptly, the physical deterioration is now too advanced for me to ever return to full-time work. Instead of my paying taxes on nearly two million dollars of earned income over the rest of my working life, I will spend the rest of my life working part-time, earning below the poverty level and paying no income taxes at all.
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