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educational public forum on liver redistribution webinar

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Posted 6/22/2015 12:56 PM (GMT 0)
Good morning,

In case you're interested, there is a webinar today from 9am-5:30pm discussing the new rules for future distribution among liver transplant candidates in the different regions. You can register and listen in through the American Liver Foundation's website.

Have a great day!

Eyes
Posted 6/22/2015 7:48 PM (GMT 0)
Eyes, I can't find this one...can you send the URL if you are online so I can check out the last part of it.

I did find a similar topic for later this year that might give some folks time to plan their participation, and generally they run them witho ut the live Q&A after the program too.

transplantpro.org/register-public-forum-liver-distribution-concepts/

Mama Lama
Posted 6/22/2015 11:18 PM (GMT 0)
Do you know what sucks? It sucks when one does not feel well enough to listen to the podcast. darn. I was all signed up and everything, and I pretty much slept all day.

The new proposed system of four or eight allocation areas seems like a mixed bag to me. I know that there has to be give and take when trying to find a equitable way of sharing a scarce resource. There will still be winners and losers in any system that is plagued by a lack of appropriate organs for all.

Schimbare
Posted 6/23/2015 1:56 AM (GMT 0)
Yes! next time I will give more notice. I had registered awhile back and had forgotten about it until it popped up on my calendar. Missed most of it as I was doing one more thing with Dad - an extended Father's Day for him..

They are just trying, ever so hard, to make the system more fair. Flying livers from coast to coast is not an option, but some of their models made more sense than the ones today. I also caught a section about exception points and the overuse of them (in some cases). One of the most argued was that of HCC exception points.

I know that when they changed the kidney allocation system, UNOS posted it on their website. I guess the new liver "rules" are not final yet, but will be in the near future.

For anyone who is interested in the webinars offered, I suggest you subscribe to the American Liver Foundations newsletter. They email me when a new one is coming up. They send you a unique user ID when you register - that's why I couldn't share my link today.
Posted 6/24/2015 1:02 AM (GMT 0)
eyes, Thanks for posting the head's up. I recall seeing this, and thought I registered. How are things going with you? Is your MELD still hanging low?

Here are a few stories floating out there due to this proposed change.


host.madison.com/news/local/health_med_fit/doctors-tackle-geographic-disparities-in-liver-transplants/article_762f0e99-7a8a-53b4-9e24-ed3853bb4ea7.html

www.post-gazette.com/news/health/2015/06/22/Waiting-lists-for-liver-transplants-under-scrutiny/stories/201506220007

For our **David**in MA, a local story that touched my heart. abcnews.go.com/Health/woman-transplant-nurse-liver-transplants-child/story?id=31778558

And this was an interesting read:


KUMEDCenter for TransplantationOrgan DonationLiver Allocation
gilroy-richard-BWP0000S“We know UNOS is working with every resource available to find a better way, but it is not good medicine to rush into radical change without a good understanding of unintended consequences.”

- Dr. Richard Gilroy, MD, medical director of liver transplantation at
The University of Kansas Hospital

Transplant Programs Call for Delay in Donor Liver Vote

UNOS, the nonprofit that governs US organ transplants is considering a plan that would change how livers are allocated. This change would disadvantage rural Americans, lower-income people, and minorities more than others. It would also harm areas that are currently very generous with donation – like the Midwest.

There are not enough donor livers to meet the urgent demand of all patients on waiting lists for organs. The need is critical in every community. Changing the way livers are allocated will not solve the problem.
Doctors at The University of Kansas Hospital – together with other similar transplant physicians – ask for:
Members of the UNOS Liver and Intestine Committee to vote no on reallocation changes or abstain from voting altogether on June 23
A non-biased third party, such as the Institute of Medicine, to review the data
All of us to work together to increase donation rates across the country
If you agree with increasing donation and keeping donor organs close to home, you can contact your public officials as Dr. Tim Schmitt discusses below.

Dear Concerned Citizen,
Thank you for your interest in organ sharing. If you feel strongly about organ sharing, you can contact the officials below or your U.S. Senator and Congressman to tell them you do not favor the redistricting of donor livers for the following reasons.

schmitt-timothy-BWP0008PThe primary goal of UNOS (United Network for Organ Sharing) is to increase the number of transplants. I strongly believe redistricting organs will simply change where people die and not increase the number of transplants. To me, redistricting will take away from the community by disrupting the bonds that form between communities, transplant centers and organ procurement organizations. Our experience shows the power of these relationships, most importantly the relationships of donor families with the recipients of their loved one’s organs. That power to create a positive attitude toward transplant cannot be underestimated as it helps inspire others to give.

I join others in concluding redistricting will also discriminate against the Midwest and rural populations, decreasing the ability of communities with the highest donation rates to get lifesaving livers. We see redistricting as just a quick fix that would escalate disease severity nationwide and cause more costs for transplant centers, taxpayers and organ procurement organizations. I believe UNOS should instead focus on donor awareness and education. If donor conversion rates nationwide were improved to equal the rate in the Midwest, 1,000 more organ donors could be added to the system per year. Donor education and awareness is where we can make a real impact. UNOS, transplant centers, community groups and organ procurement organizations should make increasing donors the primary objective. The only way to save more lives is to increase the number of donors.

Timothy M. Schmitt, MD
Director, Center for Transplantation
The University of Kansas Hospital


More information: keeptransplantsfair.org
Latest news: New research disputes commonly head beliefs about organ donation
Transplant patient writes lawmakers

Click to watch video./www.youtube.com/watch?feature=player_embedded&v=W-OI15yovT4

Kevin Roberts personal experiences with liver transplants has him speaking out on the proposed changes to liver donation allocation.

Voice Your Concern

If you feel strongly about this issue, you can always make your voice heard by contacting your U.S. Senator and/or U.S. Representative. In addition, UNOS can be contacted by the public, as can the federal agency that oversees UNOS, which is called HRSA.

UNOS and HRSA contact information

Brian Shepard
UNOS CEO
Post Office Box 2484
Richmond, Virginia 23218

[email protected]
Mary K Wakefield, PhD, RN
Administrator, Health Resources and Services Administration
U.S. Department of Health and Human Services
5600 Fishers Lane
Rockville, MD 20857




Big Hugs
Posted 6/24/2015 1:33 AM (GMT 0)
themiz,
Nice story!

I used the shark bite story a couple of years back, when a young boy asked me about my scar.
Posted 6/24/2015 3:27 AM (GMT 0)
Good links/stuff to look through. I'm doing alright - thanks for asking. Just finished up all of my annual testing for year two. All is good. MELDs a little higher - been out of the teens for a few months. Not 28 yet though.

How is TheMister? I know you guys had a rough start to the year. It's been quite a journey for you two so far! Hang in there. You're very lucky to have each other though this.
Posted 7/5/2015 4:47 AM (GMT 0)
Here are a couple of things that I got out of the wrap up from the webinar. Link's at the bottom.

If I understand correctly, they are going to look into concentric circles from the donor location (by look into - create models to run statistics). If you are closer to the epicenter of that circle by say, 150 or 250 miles, you would get automatic exception points. That model would dissolve the "local" stage of how it is set up now, I believe.

They also addressed other areas to work on that were brought up:
"increasing organ donation; further refining exception score assignments, especially for candidates with hepatocellular carcinoma; and addressing center acceptance practices to increase utilization of available livers. Our committee will further assess initiatives to address these vital considerations."

transplantpro.org/liver-forum-committee-update-david-mulligan-m-d-chair-optnunos-liver-committee/
Posted 7/5/2015 9:19 PM (GMT 0)
Thanks for the update, eyes. Hope you are having a good week-end :) Big Hugs
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