Erendira needs a kidney – North Carolina Health News

Erendira needs a kidney - North Carolina Health News

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 sits at her kitchen table at the end of November. She’d recently gotten a spot on the transplant list, but in order to actually get a new kidney she’ll need to have insurance and $50,000. Credit: Clarissa Donnelly-DeRoven

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. 

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