I wanted to inquire of the group if anyone has ever considered petitioning UNOS or members of Congress to change the MELD allocation rules to allow extra points for patients with PSC. We are truly at a disadvantage of getting called for transplant sooner than later when we are almost dead the way they are figuring it now. I'm currently at a MELD 19 but my hepatologist tells me I'm much sicker than that and need a transplant soon.
If any in the group have experience with things like this could we get up an honorable petition and get something like this going. This subject may have come up before but I would appreciate any feedback from our PSC community of how something like this might be possible. Thanks!
Mark
I think The board of directors at PSC partners would be the ones to talk to. They have an army of PSCers behind them. But not sure on their stance on those sort of political issues…
Thanks MrTwissel. I fired off an email to PSC Partners to see what they might say.
Mark
I think this could gain great support once somebody got the ball going!
Hi --
Could someone explain to me what is about PSC that makes it harder to qualify for a transplant? I'd like to understand this better. Thanks.
I wanted to post an update to this discussion I posted recently. I spoke with UNOS again today and received some more information. It's going to involve some work on all of our parts, but I believe if we will each make an effort perhaps this may have some impact. I will outline some basic steps I was told about today.
1. To get started we need to go to this web site - http://optn.transplant.hrsa.gov/
2. Now click on "Governance" and then "Public Comment". I'll simply put the link here to make it easier. http://optn.transplant.hrsa.gov/governance/public-comment/
3. The next Public Comment period will be from August 17th through October 14th. Once this window opens, this is when we can start a new proposal and each of us can post our experiences and desires. In the meantime, we probably need to be thinking of what we wish to put down and have that ready so you can just copy and paste it into the public comment proposal. I think it would be good to entertain some thought from the group on what the proposal should be entitled. One suggestion might be "Allowing Extra MELD Points for Patients With PSC Liver Disease". Then each of us could go into our reasons of why we believe this is so. Of course one of the biggest challenges we face with PSC is that the bilirubin goes out the roof but the INR and Creatinine tends to stay fairly low until we are about at deaths door. Perhaps some examples of those we know that died with a low MELD score but were much worse off than the score indicated, or some close calls, and when finally transplanted the long road of recovery. We need to wisely think through all of this. These are government type people on a board reviewing these things so they not only need our heart story of the impact on our personal lives, but some good hard facts based on perhaps what your hepatologist has been telling you about your health and all. These are just some examples of things to consider, but let's draw from our large pool and come up with a real good proposal.
3. To help us all remember to come back when the window opens, they have a mailing list you can sign up for and they will email you. I'll also make a note to post a reminder to us when the window opens. To sign up for the mailing list go to this link. http://optn.transplant.hrsa.gov/governance/subscribe/
4. Finally for some more information on how OPTN develops policy take a look at this link. http://optn.transplant.hrsa.gov/governance/policies/making-optn-policy/
I know I have rambled on but hopefully this may be something that will bring some results. We've got to keep trying. Thanks for your time.
Mark
Great info, Mark.
Jeff
I would not say that was a "ramble", Mark. All good info here. Thanks for doing "the homework" for us! It would be great to have some prominent researchers input their expertise to the board on this matter. Keep us posted on what is needed. It might be helpful to have a list of points for those who will write their stories... especially focused on the hard facts based on the science/testing and your doctors reports and opinions. Long winded stories of how hard life is will not help with winning points since that is probably the case with all folks with liver disease. Advocates for "Extra Points for PSCers" should be encouraged to talk of hospitalizations, related health problems due to hypoalbuminemia in spite of a high protein diet (low albumin is a lack of protein shown in blood testing), hepatic encephalopophy (ammonia and other toxins in the brain- causing brain fog etc...), muscle cramping, varicies, asities, thrombocytopenia (low platelets and related bleeding), to name just a few. To briefly mention what one does to stay as healthy as possible (lifestyle like no alcohol, good eating and sleeping habits, stress management etc...) and why their hepatologist or gastroenterologist sees the need for a transplant even though the MELD might be lower than, say, someone who has cirrhosis due to over consumption of alcohol.Ability to work, need for disability etc., difficulty getting disability and financial consequence would be good to mention too. Just some preliminary thoughts here.
Thanks Dolphin5 for your good reply. I certainly hope we have some experts, doctors, etc. in this PSC group that can help us in the formulation of all these things. We certainly need to be factual and not long-winded as you mentioned. Hopefully we will start seeing more posts come in that can get us pointed and focused on the key things we need to be thinking about. In looking at the OPTN site again on the public comment section, it's still yet to be seen just how we can actually comment. I do hope they don't just put certain topics that they allow comment but I hope there's a way for us to actually start a new topic. I'm just not clear on that one point because the open comment period is closed right now. Time will tell. Thanks again.
Mark
On related note: US Congress is now debating “21th century cures act” legislation that has good sounding goals. This kind of law could have some guidance to FDA and other relevant organizations, such as that for organ transplants, either MELD score or suitable disease specific marker is used, in order to ensure fair organ distribution for all diseases.
Anyway, it seems this legislation is typical law that adds lots of vague and useless regulations and helps nothing.
You can google more, here is one example
http://dailycaller.com/2015/07/09/why-the-21st-century-cures-act-is-a-mistake/