For OFA at the start of Obama’s first election cycle, I really thought we had a chance. When he gave up, I and many of my colleagues dropped out of OFA. But the issue burned. Now that my husband has been diagnosed with a incurable blood cancer - we really see how this issue mobilizes people.

And then we must reach deeply in for the roots that allow us to stand and keep going. We find our way back to the roots that support us when we stand our sacred ground in the service of what we hold most true. We do this in the face of fear and injustice—in the face of all that we cannot control.''

I know a thing or two about incurable conditions. They are awful.

has been in treatment since 2014. His remission ended in Nov 2018 (as happens with incurable cancers) and he has been on another treatment that has put him back in a very good remission since then. Thank goodness for Medicare and the fact that we "chose" wisely in getting our supplemental rather than something else (choosing done, of course, before diagnosis - but thank goodness we "chose" what we did). His first infusion after relapse we received letter from hospital saying that since Medicare ony covers 80% they are required to advise us that his 20% would be $32,000 if we didn't have supplemental!!!! And he received 8 infusions in 8 weeks - then 8 more bi-weekly and now 1 infusion a month for as long as the treatment works. Those first 8 weeks would have cost us $256,000 alone! Yeah, when people talk about "choice" I want to smack them.

His drug that he takes at home in combination with all this - costs $20,000/month (21 pills). Even with insurance - first copay is over $2500 - then in catastrophic is goes down to only $930 a month. We have to get a grant from the Leukemia Association to cover the copays. When he started this journey in 2014 a $10,000 grant covered a year. Now his $11,000 grant only covers about 8 or 9 months. It's insane. And the drug manufacturer doesn't help Medicare patients - as the CT drug parity law is considered a state law (since not all states have the law) and Medicare is a federal program (even though our Drug plan is still paid to a private insurance company). It truly is insane.

People who haven't had to navigate this crazy system have no idea just how screwed we are in this country and why I have no patience for the nonsense spouted by many against joining the rest of the developed countries in providing health care as a right!

Sorry for the rant . . . my particular soapbox!!!!