PORTLAND, Ore. — A Portland mom is in the fight for her life as she waits for a liver transplant.
Erika Zak survived cancer, fought her insurance company to get approved for the transplant and is now fighting against the system that decides whether she lives or dies.
Erika beat stage 4 metastatic colon cancer, a diagnosis doctors initially thought would kill her.
“She has fought for the last five years,” said Erika’s twin sister, Jenna Zak. “When she first got diagnosed, the doctor told her that there was nothing that they could do, and our family didn’t want to take no for answer.”
A botched surgery left Erika with a fist-sized hole in her liver. Her only option is a liver transplant, which she has now been waiting 15 months for. Every day she goes without one is another day her body deteriorates, and she suffers in unspeakable pain. It’s pain she can’t take medication for because of her condition.
“She’s dying,” Jenna said.
Erika had to fight with her insurance company to get the transplant approved. But after winning that battle, she’s now in another with the United Network for Organ Sharing (UNOS).
People who need liver transplants are evaluated and given what’s called a meld score that ranges from six to 40, with 40 meaning the person is gravely ill.
Erika had a meld score 30, which meant she had a good chance of getting a transplant. But in May, UNOS changed their criteria, which dropped her score to 23.
UNOS said they updated their process to make the scoring system more consistent and help as many people as possible. But Jenna said the changes don’t consider the unique the nature of cases like Erika’s.
“There’s fundamental problem with our health care system already, and then to have an agency like UNOS being hired by the federal government to make decisions like this, life or death decisions, is not the right way to go about,” she said. “They’re basically deciding who lives or dies and that’s not what they should be doing.”
Despite multiple pleas from Erika’s doctors, UNOS keeps denying requests to up her number, leaving her family waiting for the worst.
“There are days when I get calls midday from my mom, I’m afraid it’s really bad news and I literally don’t answer because I’m too afraid,” Jenna said. “Sometimes it has been really bad news and you panic, and you just move forward, and you do what you can to help.”
So, what can you do to help? First, register online to be an organ donor. That won’t help Erika now, but you could help someone else in the future.
If you have a loved one who is dying, you can request to make a direct donation to Erika.
Her story has been shared by CNN, the New York Times and across social media. Erika and her family have received an outpouring of support and heard from others like Erika who were negatively impacted by the policy changes. They want to thank their supporters because it’s helped Erika know she’s not alone and helped her have strength to keep fighting.