Bartlesville Man Worried He'll Be Taken Off Liver Transplant List After Foundation Closes

A Bartlesville man is in desperate need of a liver transplant and he used The National Foundation for Transplants to raise nearly $5,000 in donations for his treatment, but the foundation closed and kept the money.

He is still on the transplant list, but is worried he'll now have to raise the money all over again.

Everything in Justin Jones's life changed in August of 2020.

He went to the doctor for an infected gall bladder, but after several tests, got devastating news.

"They come back and say you've got stage four liver failure, you've got three years to live," he said.

He went to INTEGRIS Health in Oklahoma City and started the process to get on the liver transplant list.

"It's this huge list of different things you have to do, and one of them is you have to prove you are financially stable enough to support the organ once you have the transplant," Justin said.

He started raising money through the National Foundation for Transplants for the $5,000 he needed.

Friends and co-workers donated as a way to support him, who wanted to see him get better.

He's now on the transplant list, but just recently got a letter saying the foundation was closing and the money he raised was considered to be in an unrestricted fund, meaning it belongs to them, not him.

"It exceptionally hurts because they took that money and I know that $3,400 of that was from someone who really meant a lot to me, it was.. it really hit hard," he said.

INTEGRIS is not affiliated with the foundation but recognizes the financial and emotional stress created by its closure.

INTEGRIS says it continues to advocate for patients to try and help them locate the funds they need.

Justin says he's worried that without the money, he'll get taken off the list.

He's also upset for the people who have lost their funds and haven't even made it onto the transplant list yet.

"They basically had the carpet ripped out from under them, because you have to raise this much amount, and bam just like that it's gone, and you have to start all over," he said.

He says being in liver failure is hard enough and this has added even more stress.

He sometimes feels like he wants to give up, but knows he can't.

"I've got too many people I'd let down if I gave up, this illness killed my uncle in 2019, same illness, non-alcoholic fatty liver disease, with the subset of NASH, non-alcoholic steatohepatitis," he said.

The website for the National Foundation for Transplants says they closed because of the slowing economy after the pandemic, coupled with inflation and increased healthcare costs and higher operational costs.

Justin has started this GoFundMe page to raise money HERE. 

INTEGRIS Health released this full statement: 

We recently became aware that the National Foundation for Transplants (NFT) is closing at the end of April. The announcement comes as quite a shock to both our staff and our patients, many of whom have money donated to the foundation on their behalf in hopes of receiving funds for their own personal transplant needs. The abrupt closure has understandably upset patients across the country as NFT's correspondence indicates the money donated on the transplant patient’s behalf is no longer available after April 30, 2024. We work with several such organizations, like NFT, to help our patients raise money for the necessary costs associated with transplantation and post-procedure care. It is common in the industry for these organizations to receive donations as unrestricted funds, meaning the money raised is not earmarked for any specific individual. Instead, donations are collected and allocated nationwide in the form of grants. We are not affiliated with NFT or any of the other fundraising organizations, but we do recognize the financial and emotional stress created by this closure. We will continue to advocate for our patients and will partner with our patients to try to help them locate additional funds. In the meantime, patients impacted by this closure can call NFT at 1-800-489-3863, or email them at info@transplants.org (mailto:info@transplants.org). Answers to frequently asked questions can be found on the NFT website HERE.