Liver Day on Capitol Hill - April 18, 2018

Liver Day on Capitol Hill –

Hi everyone. I wanted to tell you about a recent event that happened on Capitol Hill. It was sponsored by the American Association for the Study of Liver Diseases. This is an annual event where hepatologists and patients from all over the country come to advocate for funding for various liver diseases and situations in healthcare that affect our liver patients. I was invited as a PSC Liver Transplant patient to attend the event to share my story with PSC and to speak about a bill involving protections for Living Donors when the decide to share a portion of their liver with a loved one that needs a transplant. There have been instances where the donor’s insurance rates went up or were cancelled and it affected them regarding time off from their employers and other related situations. This bill that is in the House now would offer protections for potential donors. And we believe with these protections in place it will encourage more people to be willing to make that sacrifice to save a loved one or close friend. I was grateful for the opportunity to tell my story. I am attaching to this post information on the particular types of liver disease and related things we discussed during these meetings with our senators and representatives. For me and the group I was with it was a very profitable time. I want to share the presentation I gave which will include several photos I used in my presentation to show the very real and stark reality of what liver disease does to a human body. I’m hopeful this additional funding will benefit our PSC patients as well in the days to come. I’m also going to attach the handouts of the various things our groups spoke to these members of Congress about. I hope it will be a blessing and encouragement to you to know that there are folks that are fighting for cures for liver disease.

April, 2018
My name is Mark Wilson. I was diagnosed with an auto-immune form of liver disease in 2011. It is called Primary Sclerosing Cholangitis or PSC for short. Prior to this, I always thought people with liver disease had it because they were alcoholics and had destroyed their livers drinking alcohol. Well I found out that was not the case and I had a form of liver disease that would eventually produce the same end result that came to those who consumed alcohol. PSC attacks the bile ducts of the liver. Here I had a perfectly healthy liver yet this disease was obstructing the flow of bile from my liver out to my digestive tract and thus over time it was killing the healthy cells in my liver leading to cirrhosis. There are interventional things they did along the way to clear the path of the bile ducts through endoscopic techniques, but the ducts would eventually clog back up. I lost weight, had terrible itching all over my body due to the bile salts and my skin turned orange and at the end I looked like death warmed over. on July 23, 2015 I received a call from Duke Medical Center that would save my life. They had a liver for me. I had a successful liver transplant that day and have continued to do well and live a normal healthy life.
But many people will die waiting for a liver transplant. There is no cure for PSC other than transplant. I believe more research funding will go a long way for a cure to be found or advanced treatments will be discovered enabling patients to live longer before transplantation is needed. I was fortunate to be a part of a liver disease study that was being done at Duke at the time on PSC. Although the drug did not turn out to be a cure for me, the participation in the study enabled them to watch my health situation more closely and they got me on the transplant list at the right time. Today I would like to ask for your support for the Living Donor Protection Act (HR 1280). This will allow many more lives to be saved through a living donor liver transplant by ensuring protection to donors from insurance companies denying coverage and protections for donors from loss of employment due to the recovery time needed after such a donation. And educating potential donors will go a long way to save many more lives. I know you have many decisions to make each year on how best to spend tax-payer’s dollars, but I would encourage you to consider supporting the continued funding of research into the various forms of liver disease particularly these being presented to you today so that we can save many more folks like me from a certain death.
Mark Wilson
PSC 2011 / Liver Transplant 2015

Several Photos from Liver Day -

  1. Our North Carolina delegation with Senators Richard Burr and Tom Tillis

  2. This photo is me in the middle with Dr. Andrew Muir, Chief of Hepatology at Duke Medical and Dawn Pearcy a nurse-practitioner at Duke.

Support Critial Funding for Liver Research and Services.pdf (181.2 KB)
Living Donor Protection Act.pdf (95.4 KB)
NASH and NAFLD.pdf (215.7 KB)


Mark, what a day that must have been for you, to be able to tell your story at an event that could be crucial in helping people whose lives have been touched by PSC.

Thanks so much for posting about your experience in DC.

Seenie and everyone at ModSupport

PS I was struck by how very well you are looking these days!

Thanks Seenie. I hope the efforts that were put forth by so many this past week will be fruitful for the benefit of those suffering with liver disease.


Nice going, Mark. Thanks for doing that-I hope it got their attention.