Toad in the Hole
March 13, 2007
A Take-away Quote
During the first phase of the adventure in Miami, my sister Julie was explaining the whole mess -- insurance, Medicaid, the $338,000.00 letter -- to a friend who'd called to say Good Luck.
"Wait a minute," said the friend. "You mean that when I donate my organs, they go to whoever can afford them??"
Yeah, that's pretty much how it works. QED.Posted at March 13, 2007 04:32 PM
i don't know how i thought transplants work -- really, all i know is that there is a complicated series of processes [medical screening, insurance and administrative crap, waiting for an organ, dealing with the illness leading to a need for transplant] -- but it didn't occur to me that money is the bluntest life/death factor. which probably reflects my own lack of information and reflection more than anything -- but it does not seem to me that part of the story is widely reported at all.
it just seems so wrong to demand a patient's family to come up with that kind of money if they want their loved one to even have a shot. and so distateful -- that's not a strong enough word -- to learn that when another family generously gives up the organs of their loved one, in the midst of their pain, they aren't told that the organ is reserved for rich folks. [that news certainly would not do much for increasing organ donations...]
there's something about the process you're describing that sounds like trafficking in human organs. only the grieving family giving a still-live piece of themselves gets nothing financial out of it -- someone else gets the big bucks.
i don't know if i'm even making sense, because jeanne's story hits me emotionally, and certainly something as complex as a transplant requires a lot of resources. part of my reaction is because i have a huge problem with a health care system that is designed to make insurance companies rich, not to provide health care to all. i do not know how transplant decisions are made in places where there is universal health care coverage -- because of the nature of transplants and the shortage of organs, there still must be terrible decisions about who gets an organ -- but i'd like to think the outcome doesn't depend on who can come up with a half-million $ on the spot.
Posted by: kathy a at March 13, 2007 08:04 PM
How the hell are we going to transform American health care from being a for-profit endeavor to being a for-people endeavor? It feels like trying to deconstruct and rebuild Everest with teaspoons.
Posted by: Sara at March 13, 2007 11:20 PM
I worked for a little while at the liver transplant unit here at UC Davis. My understanding is that the worst problem is the agonizing shortage of donors. Just putting the "donor" sticker on your driver's license doesn't cut it if your family, after your demise, doesn't agree. You almost need to get them all to agree to it in writing beforehand.
If there were enough organs to go to all the people who need them, it would still cost a lot, but a lot less. I have no idea whether it's any different in Florida, whether you can jump up the queue if your medical need is higher. The transplant list here in California is much longer than available donors, and likely to get worse.
None of this probably makes you feel better, but I thought I'd chip in. Am resending you a card that got returned for "insufficient postage, nonstandard envelope" -- more of our delightful bureaucracies at work...
Posted by: Pica at March 14, 2007 03:19 PM
Who was Jeanne's congressperson? Who is yours? Do you have copies of all of your sister's paperwork? Can you get it?
I wonder if you made a list of each entity that was involved, the state of Florida, each hospital, each political district and congressperson and senator, and each lobbyist and law, the organ donation groups, the insurance providers who refused to insure your sister, and traced the story...kind of "A Perfect Storm" explication of the whole thing. All of the complicit forces that went into the making of your sister's death.
Who is the attorney general of Florida? There might also be an Insurance Department, or Commission, and or Board. I am assuming he/she is a piece of shit, it being Florida.
Here in New York, it almost makes me believe in a god, in that Elliot Spitzer (now our governor) actually behaved like an attorney general should for citizens of New York State.
I'm just thinking aloud, and perilously close to the dreaded not asked for or wanted advice, so just ignore all of this if it's not wanted or not the right time.
I am sorry for your loss.
Posted by: B. Dagger Lee at March 14, 2007 03:26 PM
i'm also assuming florida is good for shit on a lot of issues, but that may be my california bias. [california is also for shit on a lot of health issues and other issues, so it's not like i have great bragging rights.] there is a possibility that with florida's large retired population, there is already some health-care-fairness-and-sanity stuff going on.
pica, thanks for what you said about organ donation -- that the family can overrule [in practical circumstances] despite the donor thingie on the driver's license. i've been a driver and organ donor for well over 30 years, but i'm not sure my kids have heard why recently. whatever is still useful, take it -- i won't be needing it. should one of them die unexpectedly, donation is what i would choose for them, too, if consulted. i'd be a flaming mess otherwise, but the chance to help someone else live -- go for it.
still very bothered by the money part. very.
Posted by: kathy a at March 14, 2007 09:13 PM
I worked in academic bioethics for awhile. They just called it the green screen.
Posted by: evil_fizz at March 14, 2007 10:58 PM
I heard the news about your sister by reading about it in Lindsay Beyerstein's blog Majikthise, which is a rather strange path for news about one's neighbors to take.
I feel great sorrow for you and your loss.
You're still living in the neighborhood just north of Ashby, right? We're in the same place we've always been, a few blocks to the south. If there's anything you need, give us a shout.
Posted by: Alan Bostick at March 14, 2007 11:38 PM
Alan, yes; we're still over by Dwight and MLK. Thank you.
BDL, some of the family are working on the records; the records from before this fiasco are gathered in one place. Jeanne got really good at recordkeeping and organization over the years. We've got the representatives' names here somewhere, too, but the real hangup was in the SSI office. Joe called Barbara Lee's office and talked to a disability specialist there -- Lee's our rep -- but basically the Florida elected officials were moving OK when pushed. As far as I know. I'll solicit opinions on that from the Jersey Squad. (If any of you are reading this, please chime in!)
I've long known that money made the difference in health care, of course. And insurance, which is another kind of currency. So did Jeanne, which was why she tried to get some for so long. She actually got a policy written recently, but someone cancelled it: One question was if it had been ten years since she had cancer, and she answered Yes. It had been over ten years since it had been diagnosed and treated; it had been only nine years and some months since she'd got the official seal of approval that she was in remission.
Yeah, I knew money was the line. But I admit I never expected to see it stated so baldly. I believe I have seen the epitome of crass. I suppose it adds to my rather negative impression of Miami.
Posted by: Ron at March 15, 2007 01:22 AM
My name is Mike Fitzer. I am a documentary filmmaker in the early stages of research on a project about the millions of uninsured in America. I ran across your blog and was horrified by what I read. I am compiling information and contacts for personal stories. I hope you will consider speakihng with me in detail about your family's experience as well as issues regarding the uninsured that I haven't uncovered yet.
While I am working out of Louisville, KY, my intention is to cover personal stories and policy on a national level.
FYI, my credits include films for the History Channel, the Discovery Channel, the Documentary Channel and a number of independent DVD releases.
Fitzer Creative, LLC
Posted by: Michael at March 15, 2007 03:14 PM
Ron, I read in the NY Times that two Los Angeles Times reporters won the Goldsmith Journalism awards for a series on organ transplants: Charles Ornstein and Tracy Weber of The Los Angeles Times for "Transplant Patients at Risk." Maybe worth a look.
Posted by: B. Dagger Lee at March 15, 2007 03:45 PM
I wonder if the Bushie hacks have destroyed, delayed and stolen SSI?
As I read in the paper yesterday, the Federal rule that requires people to prove they are US citizens (god forbid we spend money on illegal immigrants) to get Medicaid has caused 39,000 US Citizens to drop off the roles in Ohio alone, because they are too infirm, unwell, crazy, disorganized or whatever.
What has the hack Bush loyalist, fine Brownie-you're-doing-a-heckuva-job administrator in charge of SSI done to make it impossible to get benefits?
Posted by: B. Dagger Lee at March 15, 2007 03:57 PM
I'm so very sorry that you have lost your dear sister Jeanne. You and your family have my deepest sympathy.
Posted by: Joanna at March 15, 2007 09:56 PM
Ron, I just heard. I'm so very, very sorry.
Posted by: Twisty at March 16, 2007 02:08 AM