My brother called yesterday -- he was in the middle of a bad dialysis session. There were issues with his chest catheter, things like too much bleeding after days of discomfort, the usual five minute hookup took 45 instead. He knew it was going to be a long night.
A chest catheter is only a temporary measure -- his dialysis port failed last fall in spite of four operations trying to save it.
A kidney transplant could make all the difference. And I'm a match. Not only that, I've now gone through months of testing and re-testing. I've given 21 vials of blood, had two 24 hour urine tests, five urine analyses, a psychological evaluation and two cat scans of my abdomen, so surgeons could map out the best evacuation route. I'm healthy and have been cleared as his donor.
But, we have no surgery date. His insurance company seems to have recently decided that they won't cover a transplant at the hospital he's been going to. Even though they cover his doctor, have paid for various procedures he's had done there, along with all my compatibility testing, the transplant is now a no-go.
The surgeon has been asked to submit a formal appeal letter, pleading his case to do the surgery there instead of us starting over at a new hospital.
I have plenty of reasons he should include in his missive: how about that he's been treating my brother for over two years and my brother trusts him implicitly. Or the fact that with dialysis, mimicked kidney function raises him just above renal failure. That with no viable port, a chest catheter runs a far greater risk of infection, of which he's already had several. Then there's the fact that a donor is ready and waiting, that I've been through exhaustive, not to mention expensive testing and I've put my life on hold to be able to do this. And that should we need to start the process at another facility, there's no telling how soon my brother can get the organ he so desperately needs.
And here's one that doesn't seem to count anymore -- isn't this what insurance is for? For health care when you need it?
Someone, somewhere will be making decisions that while for them are mere paperwork, for us are life changing. Perhaps even life and death. This feels like a David and Goliath stand-off. Only his surgeon's appeal letter isn't a rock in a slingshot. It feels more like a used spitball that will languish in someone's inbox as my brother and I wait, without a say in what will happen next.
There are insurance stories far more heartbreaking than ours. People denied care or coverage. People who can't pay co-pays. People who live in pain or with illnesses that can be treated because they can't afford premiums. But, in this story it's my brother who's suffering. Whose life is compromised. Who's now grappling with case managers and coverage issues instead of planning for his transplant.
There's something wrong with a system in which corporations makes health decisions for people based on numbers, contracts or fees. Where patients are voiceless in their treatment. Where years of premiums don't guarantee you'll get the care you need. Where my brother will have to continue on dialysis in spite of the availability of a better option.
Health care reform is a necessity, not a conversation. And I'm hoping people continue to act on behalf of the millions who need, and deserve, to be treated better than this.
Follow Elissa Stein on Twitter: www.twitter.com/@elissastein
It's imperative that living donors maintain regular follow-up. Not only is there no long-term data on LDs health and well-being (despite the headlines from the U of Minn, Ibraham study in 09, which is rife with validity problems), reduced renal function is associated with a higher lifetime risk of hypertension, cardiac disease and death, and kidney disease and death. Prevention is imperative in regards to all of these issues.
www.livingdonor101.com
You said "There's something wrong with a system in which corporations makes health decisions for people based on numbers, contracts or fees." I agree entirely, and this one sentence is really a perfect summation of why corporations should not be allowed anywhere near health insurance, because the fact is that they are incapable of making decisions on any other basis. The courts have declared them to be people, but they are not, and thus have no conscience and no soul, those things that allow actual human beings to consider factors other than our own self-interest.
Health care reform IS a necessity, but we will never see true change until we acknowledge the futility of putting the soulless in charge and then expecting them to act like they care.
As someone who owns no stock in insurance companies and has spent a lifetime fighting for what I believe are my patients best interests, there may be a good reason for this.
A transplant is not just about the surgery, if that was all that was involved, it would be a no brainer. But there is much more to it than that. Every patient will have to deal with the potential for rejection. There are centers with a lot of experience in that area, and there are others with no experience. It stands to reason that the outcomes are clearly going to be different with regard to where the surgery is done and how the "normal" rejection is going to be dealt with.
Elissa, what you want to do for your brother is noble. But what you also want is the knowledge that you gave it every chance to succeed, and that includes doing the transplant in the ideal environment for success. Having the surgeon that you and your brother respect is important, but it is only one component of the larger picture. All will face face transplant rejection and the management of that will drive success.
http://www.sodahead.com/united-states/is-it-age-discrimination-to-give-organs-to-the-youngest-in-need/question-1540535/
http://www.latimes.com/health/boostershots/la-heb-kidney-donation-20110225,0,4846358.story
Ageism is disgusting. It should be first-come-first-serve, with enabling "Donor" status on one's driver's license. What next? Base qualifiers on transplants such as skin color, height, weight, marital status, or best of all: Financial status. Our nation is, in action, as pro-life as much as Daffy Duck is a Disney-owned character. (Daffy is owned by Warner Bros, just to hit the point home that our nation is, in fact, not pro-life despite its occasional claims.)
If you READ THE PROPOSAL, you will find that, under the current system, many organs from those over the age of 50 are discarded (never used). These changes will encourage the use of those organs in age-matched patients, thereby increasing the total number of kidneys available for transplant and number of transplants done per year.
Self-education is a good thing - read the proposal.