My son met a girl in his first year in high school in Wichita, Kansas. They were both 14 and born 1 day apart in the same hospital. They fell in 'love'. At the time, her illness wasnt affecting her life. She had C/F. Eventually it did prevent her from some activities and got worse. Still he stayed with her. People say I wear my heart on my sleeve, but my son is my hero. I try to live up to what I say but he does it with ease it seems. So, they finished high school and started college at Wichita State University. Her illness had gotten so bad that she required a double lung transplant. She had been pulling her oxygen bottles with her for a couple of years, but still she worked a job and continued college. My son quit college so he could get a full time job and provide the apartment for them both. People dont 'get it' but you could NOT get insurance for C/F because it was a pre existing condition. And a double lung transplant costs 275,000 down payment to get on 'the list'. And to get your new lungs, someone else has to die. Most people dont have that kind of money laying around and despite the fact that her mother is/was a professor of nursing and her father was an engineer at Boeing, the costs of having 2 children with C/F is staggering. And so they had bake sales and pizza drives and they went door to door begging for Rachel. And they finally came up with the down payment and it took over 2 years but she got to the top of the list. Its a first come first served list. So you watch and wait, knowing that every move up means another person died. She got to the top after 1 year waiting and then another year waiting for a type match. And just before her surgery, she finished her college courses and was preparing for the graduation ceremonies. She got the transplant but sadly, it was too late and her system just wasnt that strong. They went thru, it seems, hundreds of different anti-rejection drugs. She got her diploma in communications but in 2006, the day before valentines day, she died.
I didnt have a sudden change of heart or an epiphany, I have always thought that as Americans we all deserve quality healthcare despite our wealth or standing. But now it IS personal. And when someone says something so ignorant against the ACA, I will ask what they know. And they will say it doesnt matter. Or not answer the questions.

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