Comment I used to have an incurable disease (Score 1) 162
We've all heard terrible stories about pancreatic cancer. Only 9% live beyond five years. I'm around three years in and I look to be in that tiny group. In 2019 pancreatic cancer is incurable. Only a 1930s procedure called Whipple Surgery (there was a Dr. Whipple) has any power and only 1/3 of patients medically qualify and 1/3 of those get my result.
Anyway, I've been through anything you can think of medically. I've acquired an army of doctors. Because I'm old I have federally funded Medicare. The entire cost to me to get fixed was $0. I paid for some drugs and parking. That's it.
One of my biggest concerns was that every doctor and technician knew what everyone else knew. I take over a dozen pills a day (fewer now than before) and have a catheter port in my chest (I'm not USB compatible) which has been used over 30 times. My physicians are on three different medical records systems. That meant my wife and I became our own fourth system!
If there was a place for me to sign so my doctors were unencumbered by HIPAA I would have signed in a minute. In order to protect my privacy this law makes it more difficult for my doctors.
