I Need Your Help!
If you’ve been following my Adventures in Lung Transplantation,
you may remember that my place on the waiting list is determined by my Lung
Allocation Score (LAS). That LAS is based
upon a bunch of test results that my doctors spit into the national United
Network of Organ Sharing’s (UNOS) complex formula.
Unfortunately, the tests that weigh heavily in determining the LAS are
all focused on lung disease; they don’t account for heart failure, which is what's dragging me down.
There are some awesome medical folks in the Pulmonary Hypertension
field that are working with UNOS to “even the playing field” and incorporate factors
that show both the lung failure AND heart failure that occurs in PH
patients. UNOS is taking public comment
from anyone with a connection to this issue and since you know me, that means
you!
- Click here to submit comment on the U.S. Department of Health & Human Services website then click “go” on the “Proposal to Revise the Lung Allocation Score (LAS) System (Thoracic Organ Transplantation Committee).”
- Fill out the questionnaire, leave a brief personal comment about your connection to this issue, and press submit – that’s it!
- (The Pulmonary Hypertension Association also asks that you email Advocacy@PHAssociation.org to let them know that you have shown your support. Include any additional comments that you submitted.)
It’s pretty complicated in its entirety but here’s the official summary:
The Thoracic Organ Transplantation Committee proposes a revision to the Lung Allocation Score (LAS) system. This revision includes modifications to the covariates in the waiting list and post-transplant survival models, coefficients of the covariates, and baseline waiting list and post-transplant survival rates used in the LAS calculation. The Thoracic Organ Transplantation Committee intended for the LAS system to be dynamic so that it addresses disease severity and post-transplant survival for a given current candidate population. Except for the addition of partial pressure of carbon dioxide (PCO2) as a covariate to the LAS system's waiting list model, a thorough revision of the LAS system has not occurred since its implementation in 2005. The LAS system prioritizes candidates who are at least 12 years of age for allocation of deceased donor lung offers. The revisions to the LAS system will enable prioritization of candidates using data derived from a candidate population transplanted due to their LASs, instead of their waiting time.
and here’s the link to the entire medical jargon-filled proposal, if you’re so inclined: http://optn.transplant.hrsa.gov/PublicComment/pubcommentPropSub_305.pdf
PHA has more information on their website at http://www.phassociation.org/page.aspx?pid=4010&chid=148
And always feel free to contact me directly if you have
any questions! THANK YOU FOR THIS!
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