Sunday, July 24, 2011

Dave is four years old(er)

A heart-warming thank-you post from e-Patient Dave deBronkart.  An excerpt:

Today, July 23, 2011, is the fourth anniversary of my last dose of HDIL-2 (high dosage interleukin-2), the treatment that rapidly reversed the course of the cancer that was killing me. I haven’t had a drop of treatment – and thus not a single side effect – since then. Nobody can predict the future, but this I know: I am well.

Dave is now an international leader in promoting patient involvement in the delivery of health care, both at the individual and institutional level.  Many of us are very glad he's around.


Anonymous said...

Since it was through this blog that I was given the privilege of making friends with Dave, it is only fitting that I congratulate him here. There is NO ONE who has made better use of his second chance at life, to help others. This here is one fine man, as we say in the south.


e-Patient Dave said...


Them's fightin' words.:)

Seriously, thanks. I'm sure others have made at least as much of their second chance, but comparisons aren't worth much at times like this.

I also especially honor the patients and families whose outcome was not so grand - people who watched a family member die or be maimed - and have turned that horrible experience into positive advocacy for change. To me that's a much greater achievement.

In any case I hope folks will read my grateful post. It's longish but not weighty, and it gives proper appreciation to the many years of work by numerous smart, caring people that all came together to save one random patient from New Hampshire.

e-Patient Dave said...

This is an off-topic rant related to why I can no longer properly sign my comments here.

Google's schizophrenic dual-login problem has been fixed in some of their products but apparently not Blogger/Blogspot product, so I'm still unable to sign comments here with my usual handle and email and get notified of follow-on comments.

They have (or had, it's hard to tell) two different databases of Google logins, one for personal accounts and one for corporate (Google Apps) accounts. You could (and I did) have identical logins in both systems, but they were not the same account, and at any given moment there was no way to know which one you were logged in as.

So, I'd log in as usual (here, Google Calendar, whatever) and it would say my login's not valid - for instance it just told me my login doesn't have a Google account, and asked me to create one.

But in fact my company email, calendar, Google Docs etc are indeed on Google.

And, Google being Google, they didn't let us know this problem was happening until long after it started affecting us. (Did they not know??) But their general policy is not to announce changes - perhaps they figure "Hey, our stuff is free - don't complain." I don't know.

So I went through endless hours during that transition of trying to debug my password, etc etc. And after the two databases did get merged, it messed things up so badly for my Android phone that Verizon's top Android person eventually agreed I had no choice but to erase the phone and start over.

Google's ongoing irresponsibility about this dual-logins problem is why I'm glad they got out of the PHR business. I honestly think they don't have a clue - not a clue - about what it takes to take care of customers, including anticipating customer problems and being in communication about them.

The most recent example was just this month, when they changed how Gmail's important Priority Inbox feature works. No announcement, no "Hey, heads up, you'll soon see a change," or even "Look, we changed things." I heard from another user, too, asking "Where did the Priority Inbox go???"

It's ironic that I've given up on Google for health products, because when I had my abortive data transfer to Google Health in 2009, they did NOT do anything wrong - they just received what the hospital sent them. "We reserve the right to change how things work, without notice or explanation or documentation" just doesn't cut it for a consumer-based health product.

What's especially ironic is that these are not complicated things to do. Anyway, that's why I can no longer sign my comments by logging in as I used to. I will, again, when they fix it.

Anonymous said...


You have captured in a nutshell why I still use anonymous and sign it nonlocal. I have no patience with such nonsense even though I have 2 google accounts (which is part of the problem as you note).


Anonymous said...


It isn't clear from the post - did he figure out his own diagnosis? Find a new treatment? Get his providers to listen to him and change to something new medication? Find a way to help others get the same care ? What am I missing here?

Paul Levy said...

Watch him here to understand: