I Hate Dialysis Message Board
Dialysis Discussion => Advocacy => Topic started by: nsdq on June 30, 2014, 07:29:31 PM
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To the Admin: if this is not the most suitable forum, move to where appropriate. Thanks.
An Educationally-Powered Community For Organ (kidney) Donation
I just want to make my story just short as I can.
I live in Jordan, an Arabic middle eastern country.
Community Background:
People in the Arabic world talk Arabic language; the major religion is Islam. Islam, the same as other holy religions, does not ban organ donation as a gift of life, but for otherwise, e.g. trading, is completely prohibited.
The government of Jordan, as well as most Arabic governments, are allowing only for "related" and live donors: cousins of the first/second degree. And therefore, there's a huge lack in an ever-increasing kidney demands, as more and more patients are on dialysis. Thus, for non-related and cadaveric are not within the kindey resources.
CF. Dialysis in Jordan is primarily in-hospital haemo-dialysis; and there are very few patients that I've heard of are on peritoneal, as the latter is not recommended by Med.Doctors. The concept of a separated kidney center doesn't exist, only within the premises of a hospital. The Jordanian medical insurance covers all the expenses for the primary kidney-dialysis treatment, but some expensive medications are not covered, e.g. Phosphorus Binders, Renagel, Cinacalcet (Sinsibar/Mempara).
As to our subject, I find people in my community are hesitating the idea of cadaveric donation, as perhaps most of them are thinking the body to "relax" in the grave, which is perhaps a religious myth.
Back in 2000, when I was living in the US, I have successfully established an on-campus community office that educate people about the importance of organ donation, as more and more people whom I met with were encouraging me for a similar society, as most people were and are still ignorant about the benefits of such a "gift" of life. Unfortunately, that office lasted only for few months, because I couldn't take more responsibilities.
My objective now is take an "approach" (please this is where I need the help) of how to push the government to allow for the concept of the [WAITING-LIST], that it's primary resource would diffidently be the cadaveric.
I've talked to some medical personnel and they all couldn't give help, simply because they are not suffering: WE ARE THE PATIENTS SHOULD MAKE OUR VOICE BE HEARD.
So I would like to hear your input, at first, of how to educate patients and their families about establishing an association that this eventually will take the charge to push the gov to establish the kidney-transplant waiting-list?
Thank you.
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I just found you post and found it to be very interesting. I don't have any answers for you , though, just wanted to let you know that you seem to have a somewhat unique problem.
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I have no practical help either but it occurs to me you might make progress by identifying some other group that is trying to achieve a goal with the government. Advocacy is similar no matter what the goal. Getting an informational interview with someone like this would probably give you some ideas on how to proceed. Also if you could find other like-minded individuals you could brainstorm ideas and share tasks. A support group would be a relatively easy first step and create an environment for patient education. If you are able to get a reporter interested in the issue that might result in an article which would get attention. I suspect there are quite a few websites with tips on how to work towards a goal like this. I also wonder about the technical aspects of what you'd like to see accomplished. A hospital would need systems and infrastructure to expand their transplantation services to include deceased-donor transplants. Is there no transplantation done now in your country of other deceased-donor organs like lungs and hearts? I don't know what your country is like and how challenging your task is but this is just my two cents. Best of luck.