By Clarissa Donnelly-DeRoven
This story details the experiences of a woman on the Deferred Action for Childhood Arrivals program whose parents and husband are undocumented. To protect her loved ones’ identities and decrease their risk of deportation, we are only using her first name.
Erendira’s family immigrated to the U.S. from Mexico when she was 12. Her mom worked as a cleaner, including at a dialysis center. There, Erendira would sometimes come and help her mom mop. But the facility always made her feel uneasy — something about the rows of hulking machines that sucked the blood out of a body, cleaned it and put it back in.
“I would always tell my mom, ‘Oh, that would be the scariest thing. I would never want to be on dialysis,’” she remembered.
But her body had something else in store.
As she tidied around patients who were going through the exhausting treatment, she was slowly losing her own renal function. Less than two decades later, at 34, Erendira’s kidneys can no longer clear toxins from her body on their own. She started dialysis at the end of January.
“I didn’t want to do it. It took me a very long time to just schedule the surgery,” to prepare her body for dialysis, she said at the end of February. “But, you know, we’re here now.”
A diagnosis of severe kidney disease is painful in all the ways it can be, as is the knowledge that you’ll ultimately need a transplant. But for Erendira, there’s another layer of stress and complications: her immigration status.
She is on the Deferred Action for Childhood Arrivals program, commonly known as DACA. That’s the Obama-era federal immigration policy giving a level of immigration authorization to some people who came to this country as children and were living without any legal status. DACA recipients have to reapply to the program every two years.
Two of the most critical protections DACA offers are a Social Security number and a work permit. But there are huge carve outs when it comes to health care.
People with DACA cannot buy health insurance on the federal Marketplace. In most states — including North Carolina — they also cannot qualify for Medicaid, despite being taxpayers. Their only options are buying full-priced health insurance outside of the Marketplace, or receiving coverage through a job.
Not having health insurance poses a major problem for somebody who needs an organ transplant.
“You need some form of insurance to make it through the transplant listing process,” said Alexander Toledo, a transplant surgeon and professor at the UNC Chapel Hill School of Medicine. “It doesn’t have to be private insurance — Medicare, Medicaid is accepted.”
“I think you could call it a requirement,” he said.
That’s true at nearly every transplant center in the country. Many centers also require patients to have a lump sum of cash up front, to ensure that they will be able to pay for the transplant and ongoing care afterward. Erendira, who receives her care through the Atrium Health system, needs to have $50,000. (Atrium declined to answer questions from NC Health News about its financial and insurance requirements for transplant patients).
Healthy organs are a scarce and valuable resource. If an organ recipient candidate can’t afford the medications needed to keep that organ healthy, it’ll go to someone who can.
For somebody getting a kidney, the estimated cost of care is $440,000. There’s the full medical work-up before the surgery, the procedure itself and the cost of immunosuppressive medications and follow-up appointments afterward. Even for people who have insurance, deductibles have steadily grown. Many people are now responsible for as much as the first $5,000 of care costs per year.
“I encounter a lot of patients who I would want to refer for transplant, or suggest they refer themselves for transplant, only to find out that they weren’t eligible to go through the system based on the [lack of] insurance they had,” Toledo said.
“We would never want to leave the patient in a scenario where they’ve been transplanted but then they can’t afford the medication and end up having complications of the transplant, like rejection, because they didn’t have sufficient coverage.”
A lifetime of being uninsured
Erendira spent most of her life uninsured. It’s the norm for many undocumented immigrants and DACA recipients. Because of the restrictions these communities face in getting coverage, most estimates find between 50 percent and 70 percent of undocumented people are uninsured, as are 40 percent of DACA recipients.
Erendira’s husband is undocumented. He’s never had health insurance while living in the U.S.
Even though he would like to see if he would be a compatible kidney donor for his wife, he can’t even start the process.
“My husband tried to donate, and they told him that he can’t because he’s undocumented,” Erendira said. “When people donate, they’re also trying to think about the long term health care access that the person has, and an undocumented person doesn’t have that.”
Erendira had never been offered insurance through a job, which is the primary way that the 60 percent of DACA recipients who do have health insurance receive coverage. That changed for her during the pandemic when she found a remote job with benefits at a Charlotte-based nonprofit. But as COVID-19 infections waned, her job required all their employees to return to the office.
That meant Erendira had a three-hour round-trip commute to the office from her house in Greensboro. She tried to make it work for a while, but her gas bill climbed to $150 per week, which cut into her grocery budget, which meant her family had to start going to the food pantry.
The food was okay for her husband and kids, but it didn’t work for Erendira. With chronic kidney disease, she needed to follow a strict diet, full of fresh fruits and vegetables, with low amounts of salt.
“The food they gave us was canned,” she said. “A lot of the things I couldn’t eat.”
It all became too much, and she had to quit the job. But, she couldn’t lose her insurance. Ringing in her ears were the words of her kidney specialist, once she finally got covered: “Maintain your insurance. Wherever you go, make sure.”
She learned she could keep her coverage through COBRA, but it would cost $1,000 per month.
They couldn’t really afford it, but there wasn’t another option.
To get a transplant, “We need to make sure you are financially stable”
Erendira had never suspected that she might have a kidney issue. She got diagnosed accidentally.
In 2019 — before she got insurance — she went to a free and sliding-scale clinic for a check-up. After looking at her bloodwork, the doctor said something didn’t seem right with her kidney function. She told Erendira she needed to go to a nephrologist, a physician who specializes in kidneys. It was a struggle to find someone who would see her without insurance, but the clinic doctor eventually helped her secure an appointment.
After more tests, Erendira learned she had two issues: first, focal segmental glomerulosclerosis, a disorder that causes scarring on the kidneys. Those scars prevent the organs from filtering her blood fully. Second: Her body produces too much of a certain protein, which also causes kidney scarring.
While she didn’t exactly feel sick, the diagnosis helped explain some of the weird things her body had done for years — how her hands swelled up whenever she ate fried or sugary or salty food, for example.
Her medical team said she’d likely be stable for a few years but would eventually need a transplant. When that time came, they said, she’d need to have health insurance and $50,000.
“They said, ‘We need to make sure you are financially stable in order to maintain the organ’s health,’” Erendira said. “You have to take some medication that is extremely expensive, and it’s every day.”
That number shocked Erendira and her husband. They started looking into what the procedure would cost in Mexico. Her brother still lives there, and he had offered to be a donor.
In Mexico, the costs would come completely out of her pocket. Most estimates put the full price at about $60,000.
“Either here or there will be the same amount of money,” she said.
Hard to accept help
To raise the money, Erendira and her husband have been hustling. People in their community learned about her struggle, and though they didn’t have much money to donate, they’ve given the family a variety of things they can sell or raffle off: slippers, soaps and shampoos, cards and envelopes. They also have a GoFundMe (an estimated third of all fundraisers on GoFundMe are to cover medical bills), where they’ve raised about $7,000 so far.
Erendira is so thankful for the support, even though, at first, she didn’t want anyone to know she was sick.
“A lot of the storytelling that I did about my undocumented life, some people kind of saw it as ‘She is a victim’ and that I was struggling and so on, and I just didn’t want to feel that way anymore,” she said. “I’m a good member of my community, I give back and I’m active and I’m working really hard.”
“Also a lot of the members of the community know my children,” she said, “and I didn’t want my kids to feel like people are feeling pity for us.”
For her whole life, she said, she’s needed to be strong, to have it all together. It’s been in practical ways, like needing to translate for her parents or her husband, and it’s also been in psychological ways: When you’re undocumented, and you hear all the rhetoric about you and your loved ones, you feel like you have to prove that those people are wrong — that you’re a good person, that you deserve to be here.
Erendira carries that weight, and sometimes she bears it at the expense of her own needs. On Thanksgiving in 2021, for example, she felt sick but still spent the day cooking a feast for her family. When she finally took the turkey out of the oven, she felt like she had a fever — and felt ill enough to go to the hospital.
It turned out she had COVID.
The doctors gave her medication in the hospital that helped with the virus. But drugs she was taking for her blood pressure interacted with her COVID infection and accelerated her kidney disease, to the point that she needed to get started on dialysis sooner than she’d anticipated. It brought her to a dark place.
“I was ready to give up,” she said. “They give you that one of the treatment options is just to kind of let the disease take the route. And I see why that would happen. I understood it. There were days that I told my husband, and I’d cancel appointments, because I was like, ‘I can’t. I can’t do this.’”
The main reason she hasn’t given up, she says, is because of her two daughters. One is 8years old, the other is 14. They’re old enough to see that something is wrong, but too young to fully understand it.
They see, for example, that there is now a dialysis machine in their parents’ bedroom. Erendira is undergoing peritoneal dialysis, where, overnight, a cleansing solution enters and exits the body through a catheter in her belly. It can be done at home, in contrast to hemodialysis, where a machine cleans the blood and must be done at a sterile dialysis center.
“The youngest one, she cries sometimes and she gets stressed, so we kind of try to pretend that we’re really excited and happy and that my kidneys are getting help,” she said. “We try to make it like a game.” She encourages her daughters to look at the dialysis machine, explore and ask questions.
“But it is an adjustment. They’re trying to adjust to seeing their mom plug into this machine.”
Peritoneal dialysis can cause severe cramping as the fluid exits the body at the end of the cycle. The first week Erendira was connected to her machine was extremely painful — she compared it to labor contractions. She couldn’t sleep through the night, instead subsisting on catnaps.
But as time has progressed, her pain has lessened — a good sign.
“It’s so weird, but now I talk to the machine,” she said. Please be good to me, don’t give me too much pain, and also thank you — “because she will be working all night helping my kidneys.”
“I am trying to make it my friend,” she said.
Correction: A previous version of this story stated that the medication Erendira received for her COVID infection accelerated her kidney disease. A different medication Erendira was already taking interacted with her COVID infection and accelerated her kidney disease.