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UNOS changing how HCC scores are tabulated?

Posted by jodeej @jodeej, Mar 8, 2018

I read an article on the Compare Transplant Centers FB page and it was talking about how patients with HCC may not get exception points or that they may be tabulated differently. Has anyone heard anything about this change? Here is a link to the page: https://www.facebook.com/CompareTransplantCenters/posts/816723025178243?comment_id=817066621810550&notif_id=1520489611342873&notif_t=comment_mention&ref=notif

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 9, 2018

@jodeej, Hi JoDee. Here is link to the UNOS .
https://optn.transplant.hrsa.gov/governance/public-comment/modify-hcc-extension-criteria/
I hope this is what you are referring to.
Rosemary

REPLY
jodeej | @jodeej | Mar 9, 2018

@rosemarya it is. I messaged our transplant team yesterday and I was told it won't change anything for us. Thankfully! I was worried that he may drop to a lower score, but he will be bumped to 30 in May.
Thank you for getting back to me. JoDee

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Mar 9, 2018
In reply to @jodeej "@rosemarya it is. I messaged our transplant team yesterday and I was told it won't change..." + (show)
@jodeej

@rosemarya it is. I messaged our transplant team yesterday and I was told it won't change anything for us. Thankfully! I was worried that he may drop to a lower score, but he will be bumped to 30 in May.
Thank you for getting back to me. JoDee

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@jodeej, That is the best approach!

I honestly could not understand that medical jargon anyway! It is reassuring to see how much detailed background and study goes into the Transplant policies. They don't just 'happen' .

Enjoy your day,
Rosemary

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jodeej | @jodeej | Mar 9, 2018

@rosemarya we had a great day! We got to spend it babysitting our 2 year old grandson. He is so much fun!

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Kristin Eggebraaten | @keggebraaten | Mar 13, 2018

@rosemarya and @jodeej,
HCC and exception points is always a difficult process to understand. When changes are made to the policy, UNOS doesn’t typically print a “patient friendly” version of those changes, so it’s important to check with your physician when you have questions regarding a change. When you brought up this discussion a few days ago, we actually had one of our physicians speaking to a group about these changes that very evening – what a coincidence! We were able to ask her for some clarification, and she said the biggest change is inclusion of the AFP blood test in the listing requirements for the patient. Previously, UNOS didn’t require the AFP level. Now the level must be below 1000ng/mL. If the level is above this, it must fall below 500ng/mL with treatment in order for the patient to be listed. While there are some other changes, this is the primary difference in the new policy. It also sounds like the Regional Review Boards will be reviewing cases more often than they have done in the past.

This is a link to the actual policy, in case you want to review any parts of this with your physician next time you visit with them.
https://optn.transplant.hrsa.gov/media/2411/modification-to-hcc-auto-approval-criteria_policy-notice.pdf

REPLY
1 reply
28snash | @28snash | Mar 13, 2018
In reply to @keggebraaten "@rosemarya and @jodeej, HCC and exception points is always a difficult process to understand. When changes..." + (show)
@keggebraaten

@rosemarya and @jodeej,
HCC and exception points is always a difficult process to understand. When changes are made to the policy, UNOS doesn’t typically print a “patient friendly” version of those changes, so it’s important to check with your physician when you have questions regarding a change. When you brought up this discussion a few days ago, we actually had one of our physicians speaking to a group about these changes that very evening – what a coincidence! We were able to ask her for some clarification, and she said the biggest change is inclusion of the AFP blood test in the listing requirements for the patient. Previously, UNOS didn’t require the AFP level. Now the level must be below 1000ng/mL. If the level is above this, it must fall below 500ng/mL with treatment in order for the patient to be listed. While there are some other changes, this is the primary difference in the new policy. It also sounds like the Regional Review Boards will be reviewing cases more often than they have done in the past.

This is a link to the actual policy, in case you want to review any parts of this with your physician next time you visit with them.
https://optn.transplant.hrsa.gov/media/2411/modification-to-hcc-auto-approval-criteria_policy-notice.pdf

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Thanks so much for that explanation-very helpful!

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