Looking for a kidney
Friends don’t ask friends for vital organs. But in 2010, Donald Kagan needed one, and time was running out. The small cysts had finally begun to incapacitate both his kidneys and had caused renal failure. So he wrote letters to all his friends, asking for a favor he could never return. “It was the one of the most difficult things,” said Kagan, 50.
He thought he had two good candidates. But the first replied with a sincere rejection: he couldn’t donate due to high blood pressure. The second simply said he couldn't.
Kagan had liked living in Nicaragua, at his peaceful home in a northern city called Estelí. It’s where he met his wife, where he worked and volunteered, and where he had made lifelong friends. But he moved back to San Ramon, California, where he planned to buy time and get medical insurance before going on dialysis.
There are 26 million people in the U.S. with kidney disease and 700,000 are end-stage. Each one needs a kidney transplant or they’ll die, sooner or later.
The system is difficult to navigate. First, doctors at transplant centers have to determine whether or not you’re a “good candidate for transplant.” They are the gatekeepers for the national list, called the kidney allocation system. Once accepted, you’re ranked on a sliding scale among 100,000 around the country. Kidneys get a score, too, based on their previous owners’ health history and demographic information, such as age. Then, a federal contractor called the United Network for Organ Sharing, or UNOS, regulates the list, matching kidneys with patients at 270 different transplant centers around the country.
After his diagnosis, Kagan walked into the transplant center at the University of California, San Francisco, and then through a labyrinth of tests, forms and phone calls over two months. The hospital passed his information to UNOS, which gave him a profile and score based on biological factors – his blood type, time spent on dialysis, transplant history, symptoms.
For each kidney, UNOS has to balance utility – the cumulative years it can survive inside living body – with equity – that is, making sure all individuals in need have a fair shot at getting one. It’s an ethical calculation that can at times seem contradictory and even arbitrary, especially for those who miss out. Every day, 13 people die while waiting for their number to get called.
“We're always looking to make sure we're not putting any group of people at a disadvantage,” said Anne Paschke at UNOS. “We’re doing our best to get the most use out of any organ [with] what’s available while also making sure that all groups of people have a fair chance at getting a transplant.”
Hospitals describe the list as a pool of patients. Those patients reshuffle every time a new kidney becomes available – about every 10 minutes – based on who might be the best match.
But transplant centers consider another factor in deciding who gets in the pool: money. Can you pay for the surgery and, perhaps more importantly, the lifetime of treatment afterwards? A patient needs to be able to afford the medicine that prevents his or her body from rejecting the organ. Otherwise that transplant center isn’t making the best use of that organ.
If your finances are insecure because you’re uninsured, as are many undocumented people in the country, the transplant center is less likely to qualify you as a good candidate. No data tracks the number of undocumented people with renal disease, but it’s likely that most are not on the transplant list.
Even though Medicaid and similar state programs have extended insurance coverage to millions of low-income families, the undocumented population doesn’t have the same de facto access. Some people have registered themselves as undocumented with the Department of Homeland Security’s Permanent Residence Under the Color of Law (PRUCOL) program. This program could qualify them for Medicaid coverage in some states, including California. Some don't how know to register, fear deportation or a combination of the two. Other undocumented immigrants aren’t eligible because of where they live or their income.
Still, accessing PROCUL doesn’t necessarily qualify you for the transplant list or a good spot on it. It’s often just the first step in an uphill battle for America’s undocumented population with renal failure.
Experts point to financial insecurity as the greatest barrier to access to the transplant list. Paschke said that although “social factors” aren’t weighed in a kidney’s allocation, “being able to pay is a big issue. If you can’t afford these super expensive drugs, chances are [your body] will reject the organ.”
“When [transplant centers] are doing your evaluation, they look at everything about you and then make a decision. And that's where the ability to pay comes in.”
Kagan was lucky: He had insurance through the company where he worked. About 60 percent of the country receives health insurance through their employer.
In March 2010, he was accepted and UCSF passed him onto the national list. He was a good candidate for transplant – but his transplant center estimated a 10-year waiting time. Medical urgency is just one of many factors tossed into the calculation. The U.S. transplants kidneys from about 8,000 dead donors each year. But demand has soared: For every one kidney in the system, there are four Donald Kagans.
He thought he’d die waiting for his number to get called. “I was depressed,” Kagan said. “I had lost hope.”
Then, two months later, he was having dinner with an old friend from Nicaragua, Oswaldo Rayo. At the time, Rayo wasn't a citizen, but he was living here as a legal resident. They talked about Kagan’s organ prospects. Rayo, 53, saw that his friend had already begun to give up hope. Then, Rayo unceremoniously offered one of his kidneys. He remembers the exchange well.
“Are you sure?” Kagan asked.
Paying it Forward
In 1954, surgeons at Peter Bent Brigham Hospital in Boston successfully transplanted a kidney from one twin into his identical brother, in the first-ever organ donation from one living person to another. Today, more than 6,000 people like Rayo donate a kidney every year. One in four aren’t directly related to the recipient.
Four months after their dinner, in September 2010, Kagan and Rayo went in for surgery at UCSF. Donating a kidney is a relatively easy process, especially when compared to the grueling time spent waiting in the national recipient pool with thousands of other hopeful beneficiaries.
First the transplant center drew Rayo’s blood: O negative, a universal donor. Next, the doctors quizzed him on his medical history. All clear. Then, he and Kagan answered a battery of questions on the nature of their relationship to one another. Transplant centers have become increasingly vigilant of “organ tourism,” situations where recipients pay donors for black market organs in other countries. It was clear that was not the situation here.
Finally, the transplant center asked the ever-crucial question: Who’s going to pay?
Kagan’s insurance covered both men, including the medical evaluation, procedure, and post-op care. It’s not uncommon for non-citizens like Rayo (he’s since gained citizenship) to give organs in the U.S. and have the operation paid for by the recipient’s insurance, standard practice for living donor transplants. In 2015, 436 of the some 30,000 transplanted organs – kidneys, hearts, livers and lungs – came from “non-resident alien” donors, people in the country who are not citizens and do not have a green card.
Neither transplant centers nor UNOS collects data on how many undocumented immigrants have received the operation or how many need it. “Undocumented people can donate organs but you can’t get a transplant,” said Betzabel Estudillo at the California Immigrant Policy Center, simplifying the complex barriers in their way. “You can’t be on that waiting list. It’s pretty screwed up.”
Her opinion encapsulates many people’s frustrations with a system that accelerates organ donations from undocumented people while simultaneously blocking their access to a beneficiary list of the same organs.
Undocumented immigrants face a cycle of health care disparity in the kidney transplant system. They don’t have health insurance and don’t qualify for Medicare, which every year spends about $100,000 per undocumented patient on emergency care. They often don’t have steady work because of chronic illness, which is a result of poor access to regular healthcare. And chronically ill patients without money for postoperative medicine or ready access to follow-up care don’t make “good candidates.”
Kidneys, national regulators reckon, won’t get great mileage in an undocumented body. In addition, as demand outpaces supply by a larger margin each year, transplant centers face increasing pressure to make the best use of the organs they do have.
Every healthcare professional interviewed for this article said that there is categorically no language discriminating against undocumented immigrants in the transplant system. In fact, in many states, such as California, some undocumented immigrants may be eligible for full Medicaid coverage under PRUCOL. But those individuals don’t often make for suitable transplant candidates. Experts say there is a close connection between citizenship status and access to organs.
“Some people in the transplant community would suggest that efforts by CMS [Centers for Medicare and Medicaid] have effectively suppressed transplant centers’ ability to give kidneys to people who might not be A+ candidates," said John Murray, media relations manager at UC Irvine Medical Center.
He also said the federal government expects transplant centers to yield certain return on the organs they distribute – an expectation that leads to conservative choices. Many borderline candidates are turned away. “Most places will tell you it is a concern, if they’re being honest,” Murray said. “[Transplant centers] are entrusted with an organ, and you want to make sure it’s used and cared for properly.”
“Most people who end up getting transplants are paid through Medicaid,” he added. “I frankly don’t know what payment options are available for people who aren’t insured and who don’t qualify for Medicaid.”
Thousands of the 11.3 million undocumented immigrants in the U.S. have renal failure. Though transplant centers and UNOS may not discriminate based on citizenship explicitly, legal status prevents disproportionate numbers of immigrants from organ access because most work in precarious industries without steady pay or access to health insurance. Even if they live in a state with PRUCOL eligibility, there’s no guarantee those undocumented immigrants will get on the transplant list.
Ole Dierks, a nephrologist at Sutter Health in Oakland, said he sees the disparity all the time, where it ends up costing the state more to keep undocumented immigrants on dialysis than providing the operation.
“I've had numerous patients,” Dierks said, “who won’t be eligible for a transplant because their transplant medication is not paid for and they won't be able to have the funds to pay for those transplant medicines themselves. So it's a little bit of a schizophrenic situation, where the overall cost of a patient who has transplanted is less than the cost of somebody who dialyzes. But for some reason, their medication is not paid for, so they basically won't have the benefits of a transplant.”
“So your survival is impacted. You won't live as long.”
Turned Away at the Last Minute
The phone rang at 11 p.m. one September night in 2012. Half-asleep, Jesús González Navarro, 39, reached to pick it up, tugging at the catheter poking out from beneath his ribs, which connected him to a machine next to his bed.
Someone from UCSF on the other end of the phone told him there was a kidney waiting for him in San Francisco, but that he had to come in immediately. González, along with his wife and two-year-old daughter, got in the car and headed out of their East Oakland house. They drove into the city wary but hopeful.
The first time he got a similar call seven months earlier, things hadn’t gone well.
González had been waiting on the kidney transplant list for almost eight years. Still healthy enough to work, he had insurance through his metalworking job at Berkeley’s Pacific Steel Foundry. He was a good candidate, even though he was undocumented.
But then he wasn’t. Just before doctors rolled him into the operating room, González remembered being asked about his social security number. He told them he didn’t have one because he was undocumented. He said the hospital suddenly told him the surgery was off.
UCSF operates one of the largest kidney transplant centers in the world, with more than 5,200 patients and only some 350 kidneys each year. When the Bay Area media started paying attention to González’s case, the hospital released a statement saying that there had been “a misunderstanding.” He may still be able to get a kidney, they said, but first he had to prove he could pay for the post-op care.
“Due to the complexities of the current health insurance industry,” the hospital said, “[his immigration status] was a concern for UCSF because it increases the risk that Mr. [González] Navarro will not be able to continue to be insured and therefore not receive the follow-up care and medication needed to stay healthy after a transplant.”
The hospital declined to give detailed comment on González’s case, citing restrictions under the health care privacy law HIPAA. But Kristen Bole, UCSF’s director of communications, said in an email that González was never denied a transplant or taken off the recipient list. “UCSF does not and will not discriminate on the basis of immigration status.”
Bole said it’s standard procedure to review patients right up to the last minute to “ensure they are still good candidates.” González’s operation was postponed until he found more stable health insurance for the medical costs after the operation. The hospital referred him to social work organizations that could help him find the funding.
According to UNOS, however, transplant centers are not supposed to change a candidate’s placement on the list after they’ve been accepted as viable, regardless of the financial stability.
But that’s how González understood what had happened.
His status on the waiting list was changed to “inactive,” UCSF explained, “which means that he would maintain his place on the waiting list, but would not receive a transplant even if he reached the top unless he had a reasonable coverage plan in place.”
González had taken that to mean he was kicked off the list. But the hospital argued that it was a precaution given his uncertain financial situation, which he found confusing given he still had full coverage through work. The hospital declined to comment further on the details of his insurance and their decision.
In response to that contradiction, Bole said in an email that González’s “situation was a concern” because there was no guarantee he’d stay insured and thus be able to pay for treatment during his post-op care.
“This situation underscores the many obstacles all transplant candidates face,” she said. “These obstacles can be more difficult for undocumented individuals to overcome.”
Carmen Peralta, a nephrologist at UCSF who was not involved with González’s case, said the barriers often start at the primary care stage. Early indicators of kidney disease, like high blood pressure, go undetected because undocumented people don’t have access to insurance that covers checkups. A condition that could be treated and cured develops into a deadly disease. “Not having insurance is a gigantic predictor of outcomes,” Peralta said. “If you don't have insurance, you’re at much higher risk of having adverse outcomes.”
“If you’re undocumented,” she added, “you don’t qualify for federal insurance. Each county or city has to decide what they’ll do about it.” They end up getting primary care at the emergency room. “And by law nobody can be turned away from an emergency room.”
Some cities and communities have taken it upon themselves to bring preventative care to the undocumented and uninsured. Right across the Bay Bridge from UCSF, in Richmond, the Contra Costa Cares pilot health program, with $1 million in pilot funds from the county and local hospitals, gives primary health coverage to low-income, uninsured and undocumented people. “It’s incumbent on the community,” County Supervisor John Gioia said, to provide healthcare to the people living in it. “It saves money and lives.”
After González left the hospital, he had even more to overcome. Only one month earlier, he had been laid off from his job along with about 215 others during an immigration audit at the machine shop. Although he didn’t lose his insurance right away, he fears he may soon.
At the time, González had partial coverage from Medi-Cal (California’s Medicaid program) and some area nonprofits were funding the rest. Medi-Cal covers adult undocumented immigrants’ daily dialysis, according to the Department of Health Care Services. But it does not always cover a transplant or post-op immunosuppressant drugs, needed to prevent the rejection of transplanted organs. Unless he could establish financial security and eligibility through the PRUCOL program – which means telling the government he is here and undocumented – González would have to pay the full $263,000 for the surgery, out of pocket, not including medication.
He wouldn’t be alone. The Pew Research Center estimates that undocumented immigrants make up 10 percent of the workforce in California. Thousands of adult undocumented immigrants in the state only have limited access to Medi-Cal before registering for PRUCOL. Most other states only offer emergency dialysis under their Medicaid programs. “In a sense,” Vanessa Grubbs, another nephrologist at UCSF, writes in an editorial, “my undocumented patients are lucky to be in California.”
“It is up to the individual states to decide what constitutes ‘life-threatening,’” Grubbs argues. “In most states, only those undocumented immigrants with potassium levels high enough to stop their hearts from beating are guaranteed emergency dialysis treatment.” But most with kidney failure would argue their disease is most definitely “life threatening.”
Let down by the transplant system, González fell into the cycle of so many others in similar straits: undocumented, sick, weak, out of work and without money to solve the problem.
Most undocumented people with end-stage renal failure are younger than their American neighbors, according to studies in the American Journal of Kidney Disease, with higher rates of living donors willing to spare an organ. Advocates often point out that most undocumented immigrants in need of kidneys have their own donors already lined up. They wouldn't need to dip into the bank on the list.
“The undocumented community tends to be young and healthy, the few with kidney failure would likely have a healthy friend or family member willing and able to donate one of their kidneys. In these cases, a transplant would not take a kidney from the limited pool of donor kidneys,” Grubbs writes.
González had turned down his wife for years, even though they’re a match. “I cared about her health,” González said. “I told her that we should wait, that something was going to come up.” But his odds of surviving end-stage renal failure plummeted by 60 percent once a transplant was taken off the table. González’s life expectancy dropped 15 years in an instant.
After hearing about his story, the national non-profit Change.org started a fundraising campaign and La Clinica de la Raza offered to pay for his postoperative medicine. Others, too, gravitated toward the case. Donald Kagan was among them.
Kagan read the The Mercury News’ story, “No transplant for dying dad who is illegal immigrant,” and knew he wanted to help. It had been two years since Oswaldo Rayo saved his life, and now was as good as time as any to pay it forward. “Because Oswaldo helped me, I have the obligation to help someone else,” Kagan said. He got in touch with González, and they met in person that very same day.
Kagan became González’s liaison to UCSF – where Kagan had gotten his transplant two years earlier. For months, he translated and negotiated with the hospital on González’s behalf – the same staff from his own surgery. Doctors had already taken steps to solve González's situation, which had become something of a public relations nightmare.
Kagan also joined the petition on the Change.org campaign, asking people to join the cause: “Don’t Let Jesus [Gonzalez] Navarro Die, Approve his Kidney Transplant.” In the open letter, Kagan explained that he had received a kidney before and “UCSF never asked me if I was a legal resident.” Almost 150,000 people signed.
Then, on September 25, at 11 p.m., the call came. González’s new kidney had arrived.
This time, UCSF didn’t ask about González about his social security number. The hospital worked with the nonprofits – which were paying for his Kaiser insurance – and with and Medi-Cal to cover the cost of the surgery and the medicine. He got his new kidney.
González’s wife Angélica said she’s thankful everything went smooth the second time around. Her husband now has one functioning kidney. He takes about 20 pills per day, the regimen for the rest of his life. “I learned to value life,” she said while holding her youngest daughter in her arms.
They have three children; the youngest has autism and requires special care. González watches them every day. “I’m not afraid of poverty,” Angélica added. “I’m not afraid of not having stuff. The most important thing for me is health. Without health, there’s nothing.”
Connected to a Machine
Hugo Huerta, a 30-year-old undocumented factory worker, was blindsided by the news from his doctor, and then again by his cold reception in the world of kidney disease.
The first step for any kidney patient – after coping with the diagnosis – is usually getting on dialysis. When your kidneys fail, they can no longer filter out waste through urine. Dialysis, “a miracle of medicine,” as one doctor described it, replicates the process artificially. The side effects of waste buildup can be fatal.
Huerta had insurance through his work at at a powder paint company. Kaiser Permanente is both an insurance provider and hospital, but not a transplant center. After his diagnosis in 2012, Kaiser referred his care to UCSF, where he’d begin treatment.
“But when I called to make an appointment,” he said, “they denied it because I didn’t have a social security number”, Huerta says. UCSF again declined to comment on this case specifically, saying in an email, “Our policy is that we determine care based on medical need, not immigration status.”
“Transplant teams have made a concerted effort in the ensuing years to better communicate this complex issue to all potential transplant patients.”
The Spanish-language news channel Telemundo aired an episode about Huerta’s case in 2012. His sister had tipped them off about UCSF denying care for another undocumented patient. He said the hospital called him back shortly after and put him on the list. UCSF declined to comment on the events.
Then, in October of 2013, he lost his job at the paint factory (he suspects because of his condition). Kaiser pulled his insurance the next day, according to Huerta. He still wasn’t on dialysis and his kidneys started failing at an alarming rate. He said that he didn’t pursue Medi-Cal coverage because he thought it wouldn’t cover his surgery, even if he was chosen for a transplant.
Huerta wanted Kaiser back. But he was out of work, without insurance, and his kidney function had fallen by 80 percent. He heard about González’s almost identical struggle with UCSF and decided to reach out. They met that same day.
González told him to call Donald Kagan, who had become something of a kidney health advocate for the undocumented in California.
“He was getting very sick,” Kagan remembers. Huerta needed dialysis immediately. Kagan started paying for the Kaiser health insurance himself, out of pocket, to cover the cost of his dialysis, until he could find an alternative. In May of 2014, Huerta was on dialysis paid for by Kagan. In May, the two contacted the American Kidney Fund, which can offer third-party insurance payments for those out of work and unqualified for Medicaid. The foundation agreed to pick up where Kagan had left off and fund Huerta’s dialysis through Kaiser.
Dialysis is a temporary solution that sometimes last years. Around 80,000 people die on dialysis each year. Sooner or later, kidney disease turns terminal, and patients need a transplant.
Huerta needed a kidney, and a couple potential donors had offered.
At the time of publication, he was considering applying for PRUCOL. But that application means telling the government that he’s here and undocumented. The Department of Homeland Security then responds with a notice: either you’re already on a deportation watch list, or you’re not, but they won’t add you. It’s meant to be a safe harbor. Still, many undocumented are afraid to apply and disclose their migration status. Huerta filled out the form, but he never submitted it.
By April, he’d lost a lot of weight. Solid food and liquid had become hard to keep down (nausea is a constant symptom of kidney failure). He’d been working with Kagan on his PRUCOL application, still wary of what might happen after telling the government he’s here and undocumented.
Sooner or later he will have to apply to PRUCOL, Huerta said. In the meantime, “I’m going to keep waiting on the waiting list.”
Off the List
Many sick immigrants suffering from renal failure move to California because of the state’s political climate. It also has the most transplant centers, government funding and a landscape of nonprofits that help immigrants find health care.
Last year, Senate Bill 4 passed, extending full Medi-Cal coverage to undocumented children 18 and under, who could previously only access limited care, such as dialysis, but not a transplant. Now, however, about 170,000 undocumented children will have access to Medi-Cal, including kidney transplant.
The Medi-Cal expansion for undocumented children is exclusively state-funded and is expected to cost the state Department of Health Care Services about $132 million annually.
"This is a major investment that California is doing, and it's completely the reverse of what we’re seeing at the national level," state Sen. Ricardo Lara (D-Bell Gardens) told the L.A. Times in October of 2015.
President-elect Trump has expressed his intentions to roll back federal and state healthcare policy provisions, such as Medi-Cal expansion. Tens of thousands of children in the state could lose transplant coverage. "California stands out," Lara said. "It says we are not going to buy into that rhetoric that’s divisive."
Many undocumented people, adults and children, come to California for that very reason. They hope to find the care they need in an environment that’s more welcoming than other states. At least 1,500 of the 2.67 million undocumented people in the state have renal failure, according to an estimate from the University of Washington.
The California Health Care Foundation estimates a quarter of the 3.8 million uninsured Californians under 65 are not eligible for coverage because of their citizenship status. Half have incomes low enough to qualify for Medi-Cal.
Irvin Xochitla, 22, had lived in Atlanta since he was eight months old. He was diagnosed with renal failure at 13. Every week for five years, he got a call from a local clinic to set up a checkup and dialysis appointment. Then, after his 18th birthday, the calls stopped. When he reached out to the clinic to find out why, they told him, “You’re no longer admitted in this facility.” Unlike California, Georgia cuts off state-subsidized dialysis treatment for adults.
Xochitla had begun coughing up blood, losing his breath regularly and suffering seizures. The toxins in his body that dialysis had circulated out for years were now accumulating inside. “What am I supposed to do now?” he thought. He didn’t have a Donald Kagan in Georgia. He packed his things and headed west to Los Angeles in March 2012, leaving his mother and brother behind. He has seen them just once since.
He used to live in a room in his friend’s Boyle Heights apartment, not healthy enough to hold any sort of steady job while trying to attend community college. He had been getting dialysis treatments through Medi-Cal. “Without money,” he said, “it’s kind of hard to get food. Right now I’ve only been eating once a day to save money and to save for buses to go to school.”
Depression, experts say, is the debilitating passenger alongside many chronic illnesses like kidney disease. The symptoms, side effects, and constant medication make daily life more of a maintenance exercise than actually living. Xochitla was taking seven pills with every meal and one injection every night, before the nine hours of dialysis. It was hard for him to keep a job with the burden of fatigue, nausea and regular trips to the emergency room, let alone mental health upkeep.
“You experience the spectrum of human emotion at all times,” said Joseph Perales at La Clínica, Casa del Sol in Oakland. La Clínica organizations all over California offer health and legal services to immigrants.
Xochitla and Kagan spoke once on the phone. He told Kagan that he’d tried and failed to get on the waiting list because his local transplant center turned him down for lack of funds. Kagan pled with him to find a new transplant center that might have more wiggle room. Surely he could find funding and eligibility elsewhere. According to Kagan, Xochitla seemed uninterested and tired at the idea. He was trying to fund his own operation.
Xochitla had raised almost $4,000 on a GoFundMe page when he went to the hospital for chest pain last November, like he had so many times before. (Chronic chest pain is a common side-effect of renal failure.) That night he slipped into cardiac arrest, then a coma, before his heart finally gave out. He was 24.
More healthcare reforms – the follow-ups to SB-4 – are currently jostling through Sacramento. Senate Bill 10 would allow undocumented adults to receive comprehensive Medi-Cal, just like documented citizens, including kidney transplants and medication. It will also grant all Californians, regardless of immigration status, the ability to buy coverage through Covered California with their own money by requiring the state to apply for a federal waiver.
That would be big for people who fell through the cracks, toiling in obscurity outside the kidney transplant system. They could finally become “good candidates.”
“On dialysis I don’t feel like I’m on my full potential,” Xochitla once said. “I know I can do more because this illness is keeping me at a certain place. I want to move beyond that, push myself, but the more I push myself, I’m pushing my body, and my body can just give up on me.”