I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: News Articles => Topic started by: okarol on July 25, 2009, 02:14:49 PM
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Support Gift of Life Act
By Steve Orr
GHS
Posted Jul 25, 2009 @ 12:00 AM
FRAMINGHAM —
What follows below is most of the testimony that I delivered on July 22 to the Committee on Finance at the State House in support of the Gift of Life Act, sponsored by Sen. Karen Spilka. It is important for everyone to understand that this bill is not just for helping a few people who are in a tough situation; it is also an excellent example of fiscally responsible legislation.
"The reason I'm here is because four years ago, my wife almost died multiple times before finally receiving her second kidney transplant. To give you a taste of what things were like, her red cell count was so low that her blood flowing through the dialysis machine three times every week wasn't even red; it was really a light pink color. She could have accepted a blood transfusion as her doctors encouraged her, but to do so would have caused her immune system to react and be altered such that she would be rendered incapable of ever receiving a transplant. Against doctors' orders, we took a gamble and she survived. It could easily have gone the other way.
"Ultimately, the person who donated his kidney for my wife turned out to be a relative. Initially, I offered to put his family up at my place in Framingham while the surgery took place at Mass General Hospital in Boston. It turned out that with a new baby, it was more convenient for them to stay next door to the hospital at the Holiday Inn. I, of course, wanted to cover their bills, but I was embarrassed to find that because they were from New York state, their hotel and travel costs were already covered by their state's Gift of Life Act, whereas there is no such provision for this coverage in Massachusetts.
"In fact, before the transplant, using all means at my disposal, I had encouraged a total of 34 people from the community to step up and volunteer. There were a few who backed out, not because of cold feet, but because they had simple economic issues that they could not handle, issues that may not have been of concern were they not in Massachusetts.
"We live in exciting times. Technology is increasing at an exponential rate. It will be even more astounding to see what we come up with five years from now compared to what has advanced since the last five years.
"However, one area in which we are very much behind is the management of living organ donation. With the impressive system of doctors, nurses, hospitals, transplant clinics, dialysis clinics, social workers, the United Network for Organ Sharing, the New England Organ Bank, and people I don't even know about, this state can clearly do better in putting more of an emphasis on living donation versus cadaver donation. We want to be as strong as other regions in our nation which excel in living organ donation programs. Does Massachusetts not want to be as strong as so many other regions in our nation which already excel in the arena of living organ donation programs?
"Most states have some form of a Gift of Life Act. Hopefully, you will be the people who will be able to correct this problem and institute this measure in the great state of Massachusetts. This act will be a starting point to increasing people's awareness of the importance and safety of living organ donation, and to enable those who are currently willing but not economically able to participate in order to save a life.
"The last thing I need to do is to stand here and tell you how such a small amount of state expenditure can be of such huge importance to a small group of people who literally die every day, needlessly waiting for a transplant. If you don't already know the numbers then I'm sure there are people here who can speak on this subject much more authoritatively than I. What I do want to say though, is that as people who work in government, you are all acutely aware of how some things are configured to show direct paybacks and how other expenditures can have even bigger paybacks with possibly less direct accountability. For example, in Framingham, we pay attention to cultural components, like the Danforth Museum. We know that when people go to shows at that museum, they also park their cars, walk around, do some shopping, maybe even have a nice meal and stay at a local inn. All of that is good for the town. And the revenues, while not easy to quantify, are quite substantial.
In this case, the longer that an end stage renal patient is prevented from becoming a transplant recipient, the more it costs us as citizens of Massachusetts. The good news is that you, as legislators, will have access to the statistical accountability data of such a program. You will be able to see the time spent on dialysis by people whose donors are able to take advantage of the Gift of Life Act, versus the people who do not find donors or who even die.
Do it for the people who need it and also do it because it makes optimal economic sense.
Steven W. Orr is a Framingham resident.
http://www.metrowestdailynews.com/opinion/letters/x2047450746/Orr-Support-Gift-of-Life-Act