EVANSTON, Illinois — Jorge Mariscal started to feel sick his junior year of high school, but he did not know the extent of it until his doctor told him he needed a kidney transplant.
“When you hear that as a teenager,” Mariscal says, “everything just comes crashing down, especially since you don’t know what all of this means.”
When he found out what it meant, he was scared. As an undocumented immigrant from Mexico, Mariscal wasn’t eligible to get on the waiting list for a transplant, and it seemed unlikely he ever would be. He was told he would have a better chance of being treated if he went back to his home country. But Mexico did not feel like his home country anymore, since Mariscal moved to the U.S. at just 6 months old.
“You can’t get onto a transplant list without insurance in this country,” says Dr. David Ansell, chief medical officer at Rush University Medical Hospital. “You’re basically shut out of the system.”
In December 2011, Ansell got an email that said a group of protesters were coming to Rush to ask for access to organ transplants. It was the first time he had heard of the issue. After hearing dozens of patients’ stories, including Mariscal’s, he knew it was something he wanted the hospital to address.
“In order for people to donate their organs altruistically,” Ansell says, “one wants to do it knowing it would be given fairly. Not to the richest people, not to the people with the best insurance, but really to everyone based on need.”
Mariscal desperately needed a kidney. After hearing reactions from multiple doctors, Mariscal’s mother took things into her own hands. She organized fundraisers and met other activists in the community, and she and another patient’s mother proposed a hunger strike. They picketed outside hospitals across Chicago and were able to convince Loyola University Hospital to take Mariscal’s case. After seven years on dialysis, at the age of 23, Mariscal finally received a new kidney. It was donated from someone who had been involved in the fight alongside him the whole time – his mom. She could have given him her organ years earlier if they had had a hospital to host them.
“After my transplant,” Mariscal recalls, “I asked my mom what she was getting me for Christmas and her response was ‘so my kidney wasn’t enough for you?’ and that made me laugh. It was one of those moments that I’ll always remember.”
Mariscal’s story had a happy ending, but that’s not the case for many others in the community. Ansell hopes to change practices related to undocumented patients at Rush.
“These are real people,” Ansell says. “They live in our midst, they contribute to our society in a big way. Until we have a really fair health care system, this could happen to any one of us.”
Ansell says regulations on the National Organ Transplant Act of 1984 state that organ transplants should be given to patients based on medical need, not based on financial need or national origin. This has not been the case. Although around 30 percent of donated organs in Chicago are from uninsured patients, only 1 percent of uninsured patients who need organ transplants end up getting them.
Mariscal says he believes parts of the medical system are flawed. “Why is it that we’re allowed to donate,” he asks, “but when the time comes when we need an organ, we’re shut off?”
But, organ transplants in Mexico, and in the rest of the world, are not necessarily easy to come by, either. In Mexico, a lack of trained medical personnel causes a loss of potential organ donations. Compared to 29 organ donors per million people in the U.S., Mexico only has 4.6 kidney transplants per million.
In Iran, selling kidneys is legal — an act prohibited in the U.S. under the National Organ Transplant Act of 1984. Thus, the country keeps up with its kidney demand, but since many who sell their kidneys are the nation’s poor, most face health problems from selling.
Spain is known to be the best in organ donation, with 35.3 organ donors per million people in the country. Unlike the opt-in policy in the U.S., in Spain, citizens follow an opt-out policy, which means they are automatically donors unless they choose to opt out.
Now, Mariscal continues his studies in graphic design, but activism remains a large part of his life. He realizes more than ever the importance of the community around him.
“When you have the support of not only your community where you live,” he says, “but the support of other communities, your fight, your struggle, is a lot stronger, and your voice is amplified.”
Sources: ABC News, Bloomberg, Jorge Mariscal, Dr. David Ansell
Photo: IJ Review