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  • Writer's pictureIsa Luzarraga

‘I’m not leaving’: How a 21-year-old Salvadoran immigrant is fighting for medical justice

The biting November wind propelled 17-year-old Katherinne Zabaleta through the doors of the emergency facility at the East Boston Neighborhood Health Center. Her clothes were soaked with sweat, her dark hair plastered to her forehead. She adjusted her sweater, preparing to be sent home—for the third day in a row.

Zabaleta initially went to the ER in late 2020 because of shortness of breath she believed to be a symptom of COVID. At the center, she tested negative for COVID. The doctor sent her home and told her to rest—even though she had been feeling faint and lost feeling in her fingers and toes. The next day, she returned to the center, only to be told that she would be fine with rest. On the third day of her relentless sickness, a pediatrician called her back to the ER because of her abnormal vitals.

After being passed off to multiple ER staff, a pediatrician wrapped a blood pressure snugly around Zabaleta’s arm. Despite her blood pressure of 240/160, Zabaleta didn’t feel sick anymore. The three days of non-stop fatigue, perspiration, and tingling had rendered her body numb. The ER staff called an ambulance for a confused Zabaleta. A pediatrician told her that her life was in danger and that she was at risk of having a heart attack.

“They acted like I was going to die,” Zabaleta said. “I felt so embarrassed because I thought I had done something wrong.”

It turns out that for years health care providers at the center had missed signs that she had kidney problems. Now, the 21-year-old is preparing for an organ transplant and facing the reality that the healthcare services accessible to Boston’s immigrant communities weren’t enough to prevent years of pain and costly medical bills.

Zabaleta hadn’t done anything wrong, according to Patricia Montes, director of the immigrant rights organization Centro Presente. In fact, her experience was common among Central American immigrants seeking care at the East Boston Neighborhood Health Center. Centro Presente lodged a complaint with the Massachusetts Attorney General’s office over a year ago, with the help of Lawyers for Civil Rights against the center. They have since submitted additional demands. The complaint cites a pattern of minimizing and dismissing immigrant women’s health. Last spring, representatives from the Health Care Division of the Attorney General’s Office visited Centro Presente headquarters to hear affected patients’ stories.

Among those affected is immigrant mother Liga. She took her newborn son David to the center in July of 2020, concerned by his listlessness and the purple color of his lips. After a check-up, physicians said she could take him home. The next day, Liga returned to the center, David’s symptoms still persisting. EBNHC staff called an ambulance to send David to the Boston Medical Center. He was revived once en route but was declared dead upon their arrival at the hospital, according to Liga and Centro Presente.

“Healthcare is a human right and we cannot allow more families, especially women, to be denied this right simply because of their country of origin, language or healthcare coverage,” Montes said. “It is unacceptable that this local clinic, established and financially thriving off its reputation precisely for providing care to the most vulnerable, does not take responsibility for its actions of discrimination and poor healthcare provided to that population.”

EBNHC declined requests to comment.

Zabaleta on her 16th birthday. The swelling under her eyes begins to worsen.

Zabaleta had put faith in her physician and health center for over a decade. She never imagined that a cold November day would end in an ambulance trip, a hospital stay, and eventually, a diagnosis.

At Mass General Brigham, Zabaleta said the attending doctors were surprised that Zabaleta was conscious given that her blood pressure indicated a hypertensive crisis. The doctor who would become her nephrologist was shocked when he read Zabaleta’s chart. After an ultrasound, MRI, and a biopsy of her kidney, the physicians confirmed what Zabaleta’s medical records had been indicating for the past 12 years, unbeknownst to her and her mother. She had kidney disease. She needed immediate dialysis and to be put on a transplant list.

Examining her medical history, the nephrologist saw that Zabaleta’s longtime primary care doctor first noted an abnormally high amount of protein in her urine when she was 5 years old. Despite this trend continuing for the next 12 years, Zabaleta was never referred to a specialist or diagnosed. Finally, at Mass General, she was officially diagnosed with Focal Segmental glomerulosclerosis (FSGS), a condition ultimately leading to end-stage kidney disease and failure.

“I thought that for the past 12 years, I was fine,” Zabaleta said. I never thought that all these symptoms were an issue because I always went to my doctor, and she told me I was fine. So when the doctors told me I had FSGS, I didn’t even know how to react. I still don’t know how to react.”

Despite the rise in anti-immigrant sentiment nationwide, Zabaleta had always felt safe in Boston, finding community in the Latine-dominated suburb of Chelsea. Since her diagnosis, she feels less secure in the home she and her mother sacrificed everything to build.

A younger Zabaleta with her brother.

Zabaleta would have her first appointment at the East Boston Neighborhood Health Center weeks after her arrival in the U.S. As an immigrant child, the doctor who would become Zabaleta’s longtime physician, urged her to stay still as she poked her arms and legs with various vaccines. For Zabaleta and Alvarado, as well as many others in the Latine-dominated suburbs of East Boston, EBNHC was the most accessible medical center in the area, a clinic that accepted MassHealth Limited, the insurance plan many non-citizens hold while waiting for additional documentation such as work permits or visas. As of last month, over 300,000 people are covered by MassHealth Limited. It took eight years for Zabaleta and Alvarado to get approved for a work permit. In 2020, they were finally eligible to receive expanded MassHealth coverage.

Damaris Velasquez, the co-founder of immigrant-affinity organization Agencia ALPHA sees firsthand how non-citizens working toward citizenship are afraid to take advantage of state-funded health care like MassHealth Limited. In addition to providing pathways to citizenship, Velasquesz and Agencia ALPHA help immigrants understand their right to state-funded health insurance and advocate for continued coverage.

“Receiving appropriate health care has always been an issue for our clients because they are so afraid that if they receive any type of benefit, that would be an issue in their immigration process,” Velasquez said. “We had to do a lot of education, letting people know that having good health care doesn’t mean that people are going to take advantage of that system.”

After immigrating from Guatemala when she was 19 years old, it took Velasquez 23 years to gain American citizenship. During that time, when she had to go to the doctor, she relied on the benefits of Health Safety Net, a program of MassHealth dedicated to uninsured and underinsured individuals. Nearly 150,000 residents are currently using Safety Net. Still, immigrants must disclose their status in order to receive these benefits, leaving many fearful of potential deportation or hold-ups in the naturalization process.

And as Zabaleta was quick to find out, Safety Net and MassHealth Limited don’t cover medical tests like MRIs, biopsies, ambulance fees, and some treatments and medication.

It was 2008 when 5-year-old Zabaleta trekked the nearly 4,000-mile journey from Santa Ana, El Salvador, to Boston. She doesn’t remember much of the trip, only that her mother, Elizabeth Alvarado, had left El Salvador for the U.S. nine months earlier, to earn money to pay for her daughter’s crossing across the Rio Grande. Seven thousand dollars, 15 days, and a lost shoe later, Zabaleta and her mother were reunited, finally safe from the gender-based violence and threats they had endured in Santa Ana.

As a child growing up in Chelsea, Zabaleta was always sick. She had frequent swelling in her eyes and limbs, severe anemia, and high blood pressure.

“I would always tell my doctor, ‘I have swelling in my eyes. I have swelling in my feet,’” Zabaleta recalled. “As a little girl, I used to wear jeans or leggings, and the leggings would leave marks on my legs. I thought that was normal, and I told the doctor and she said, ‘Oh yeah, that’s fine, it’s just because the leggings are too tight.’”

So Zabaleta ditched her brightly colored leggings and continued attending yearly check-ups. After all, she thought, the doctor says everything is fine, why wouldn’t I be healthy? In Zabaleta’s mind, she had no reason not to trust her physician and the staff at the East Boston Neighborhood Health Center.

When she was 8, her doctor assisted and comforted her when she was sexually abused. Despite her subsequent depression and PTSD, Zabaleta was still assuaged by her doctor, “‘You’re just not sleeping right.’ ‘You’re on your phone all the time.’ ‘It’s seasonal allergies, you just need to rest.’”

Zabaleta’s account reflects many other patients’ experiences with the East Boston Neighborhood Health Center, Montes said. Montes and the patients hope that their complaint will elicit a formal investigation from the Attorney General’s office. Until then, organizations like Centro Presente are advocating for legislation that would expand MassHealth coverage to all children in the Commonwealth in an effort to prevent cases like Zabaleta’s.

The Cover All Kids initiative would provide “comprehensive MassHealth benefits equivalent to the benefits available to individuals of like age and income” for all residents 21 years and younger. In other words, a 21-year-old non-citizen like Zabaleta would receive the MassHealth coverage provided to a 21-year-old citizen in the Commonwealth within the same income bracket. Despite a similar resolution dying in committee during the past two legislative sessions, the Cover All Kids legislation is currently the joint committee on healthcare financing.

Jessica Santos, the director of the Leah Zallman Center for Immigrant Health Research, said legislation is a part of the never-ending path toward dismantling anti-immigrant policies. In her work at the Leah Zallman Center, she has seen firsthand how social determinants of immigrant health are faceted. Beyond legislation protecting immigrant rights, the impact of anti-immigrant narratives has become a substantial part of her research.

“Policy really matters just from a tangible perspective,” Santos said. “Narratives matter because the public charge ruling during the Trump administration had this serious chilling effect on immigrant communities, especially Latinx immigrant communities. [Even though] the policies are no longer in effect, the narratives are still there in the community. The fear that it incited in Latino communities is real. Even if policy is improved, the narrative can be stronger and anti-immigrant narratives in communities can really prevent people from accessing care.”

Despite the strange looks she receives walking into the East Boston Neighborhood Health Center, Zabaleta still frequents the four-story brick building for basic check-ups. Since her family’s move, they are closer to Mass General, yet Zabaleta refuses to leave the center completely behind.

“I’m still looking for justice. Until they understand that what they did was not okay, not just with me, but with a lot of other people that go to [EBNHC], I’m not leaving,” Zabaleta said. “My nephrologist has asked me before, ‘why don’t you just get yourself another doctor?’ I told him, I will, when they understand that what they did is not okay. When I see changes, that’s when I’ll leave.”

Her younger brother also has kidney disease; their condition is expected to be genetic. He sees his sister’s previous physician, the one she had for her entire childhood. However, he is granted referrals and receives overall better care from Zabaleta’s perspective.

“He was born here. He has good insurance. He’s got the ‘American insurance,’” Zabaleta said. “So whenever he has a problem, he gets referred to a specialist right away… (The doctor) will do anything for him right away. When I would go, she would say ‘oh, it’s okay.’

They would always blame my problems on me.” Between doctors’ appointments and her job as a sales associate, Zabaleta is still a 21-year-old woman who loves hiking, spending time with her dogs Prince and Cindy and rewatching the movie, Divergent. While her health has played a significant part in her childhood, she knows that her strength, not her struggle, is what defines her future.

Photo of Katherinne holding up a sign that says "Healthcare is not a business." Behind her silhouette are different posters calling for changes to healthcare policy.

Design by Isa Luzarraga.

Originally published in Keke Magazine.


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