9 Investigates: Rules blocking patients from lifesaving transplants

Chances are you or someone you know may need an organ transplant some day -- more than 100,000 people are on the list right now in the United States waiting for a transplant that could save their lives.

But, many more can't get on that list and it often comes down to money, specifically, whether you have insurance or not.

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Mauricio Larios Espinosa's heart is weak and continues to get weaker. He may need a transplant one day, but he might not be able to get one because despite working at the same place for 16 years, he doesn't have health insurance.

The decision of who gets on the list for an organ transplant and who doesn't is made by transplant centers.

There are four transplant centers in North Carolina, including Atrium Health.

None of the people we spoke with are patients from Atrium.

"The person featured in this story has never been an Atrium Health patient so we are unable to speak to his care, transplant eligibility or status," Atrium officials said in a statement. "Atrium Health follows all national transplant standards and regulations outlined by the Organ Procurement and Transplantation Network and the Centers for Medicare and Medicaid Services, and is firmly committed to our mission:  to improve health, elevate hope and advance healing – for all."

The United Network for Organ Sharing in Richmond, Virginia, or UNOS, takes calls from transplant centers all over the country, matching organ donors with people waiting for a transplant.

UNOS spokesman Joel Newman said transplant centers may ask if the patient has a serious illness like cancer; that would rule them out.

"Certainly the transplant hospital is looking for the medical aspects, is transplantation even a good treatment for this person," Newman said.

He said the hospital will probably ask if a patient has family and friends to help them through the long recovery process. They will also ask about money.

"Ability to pay is one of the factors," Newman said. "They will look at whether that person has private insurance. Do they qualify for other forms or can they raise funds to help not only with the transplant itself, but keep in mind the transplant is a long term treatment."

Newman said at UNOS, they do not ask about those factors -- they just try to find matches for more than 114,000 people waiting for a transplant.

"There's never been a time in the history of our network that there have been enough organs to go around," Newman said. "But, we do the best that we can to develop those criteria and match people as equitably, as fairly, as possible."

Evelyn Pittman's daughter Audrey was 6 months old when she got a new liver that saved her life. Pittman said Audrey is happy and healthy now, but that she has seen the other side.

"I do know a couple people from home who are awaiting transplants but can't get on the list, you know, due to mental health issues or they don't have insurance," Pittman said. "They still need that organ. I mean no one should have to die waiting for a transplant."

Espinosa said he is still hoping for a miracle, but without insurance and with his name not on the list, he said he knows a new heart may be too much to ask.

To sign up to be an organ donor in North Carolina, click here.

To sign up to be an organ donor in South Carolina, click here.

Cox Media Group