Left Behind by the Affordable Care Act

Art by Cathy Krizik.
Photo of Dominga Sarabia by Lily Dayton, design by Cathy Krizik

Santa Cruz resident Dominga Sarabia* began to itch after taking the antibiotics a doctor prescribed to treat her ulcer. Her skin prickled with hives, and her hands, face and throat swelled until she feared she wouldn’t be able to breathe. She headed to a nearby emergency room, where doctors attended to her quickly. They gave her a prednisone shot and a bottle of pills, then sent her on her way. A couple of weeks later, a bill arrived in the mail for $3,800—nearly three months’ income for the single mother, who works at a restaurant and cleans houses to make ends meet.

“How am I going to pay for it? Working in a restaurant, they don’t give you insurance,” Sarabia says in Spanish. “I don’t qualify for Medi-Cal because I’m not legal.”

Sarabia is one of the estimated 
2.6 million undocumented California residents who are explicitly barred by law from the benefits of the Affordable Care Act (ACA). The legislation has been a huge boon for many Californians. More than 3 million previously uninsured Californians gained health insurance since the start of the ACA’s first enrollment period, according to a July study from the Kaiser Family Foundation. Almost 30 percent of the remaining uninsured, however, are undocumented immigrants who are ineligible for both Medi-Cal and assistance through Covered California.

Late last week, Gov. Jerry Brown released a budget with no additional money to cover the health care of undocumented immigrants. Sen. Ricardo Lara, D-Huntington Park/ Long Beach, however, is sponsoring legislation that would expand health care coverage to all Californians, regardless of immigration status. The Health for All Act will be considered in the legislature this year; it failed to pass in 2014, when it was initially introduced.

Meanwhile, “everybody else in the population is moving up into the post-ACA era,” says Nadereh Pourat, director of re- search at the UCLA Center for Health Policy Research. “The undocumented are left behind.”

An Act of Exclusion

Legislators who opposed including undocumented immigrants in health care reform mostly cited economic reasons— that unauthorized immigrants would overburden the medical system at the expense of U.S. citizen taxpayers. Yet a 2013 article in UCLA Law Review Discourse points out that between 2000 and 2005, undocumented workers paid an estimated $6 billion to $7 billion into Social Security and an additional $1.5 billion into Medicare—programs for which they cannot reap the benefits under current law.

In 2005, almost 2 million taxpayers filed federal tax returns using an individual taxpayer number (ITN) rather than a social security number. The majority of filers using an ITN are undocumented workers.

“Part of me feels frustrated and angry because I don’t have the same rights as everyone else,” Leo Ramirez* says in Spanish. An undocumented immigrant from Michoacán, Ramirez has been building luxury homes in California’s construction industry and paying taxes for the past 18 years. “The government discriminates against me in the services I can receive—but they don’t discriminate against me when it comes to paying money into the system.”

There is evidence that barring undocumented immigrants from the ACA will likely cost everyone more money in the long run. By the nature of the migration pattern, recent immigrants are healthy. They are typically young, and they’ve survived lengthy journeys under arduous conditions to cross the border. Numerous studies have shown that undocumented immigrants have similar or better levels of health compared with U.S. citizens and other immigrant groups. As a whole, they have similar rates of diabetes and high blood pressure, and lower rates of asthma.

“This is not necessarily good for the exchange if you have a relatively healthy population that can’t participate,” says Pourat. Insurance companies operate by having a large base of healthy members who use few services yet pay premiums that help cover the expense of those less healthy members who use extensive services. Having a larger pool of healthy, low-risk individuals who buy into the insurance exchange lowers premiums for everyone.

Pourat was the lead author of a recent study that showed undocumented immigrants use fewer medical services—including doctor visits and emergency room visits—than U.S. citizens and other immigrant populations. “This flies against assertions that the undocumented are the ones overcrowding emergency rooms and overtaxing the system,” says Pourat.

The fact that the undocumented population is relatively young and healthy is not the only reason they don’t seek medical attention. And the conundrum is that the long-term maintenance of good health is dependent on access to quality health care.

Being uninsured is a significant barrier to health care access for the undocumented, a large proportion of whom are poor. A separate study Pourat co-authored reported that 57 percent of undocumented immigrants in California were living below the Federal Poverty Level in 2009, versus only 11 percent of U.S. citizens. For the extremely poor, any money spent on doctor visits or medicine takes away from other family necessities. Time spent in clinics takes time away from work. Transportation is another expense. Undocumented immigrants also face language and cultural barriers to accessing health care.

“One of the reasons undocumented people don’t come in is because, culturally, they don’t [seek] care unless they hurt—and they have to hurt so badly,” says Maricela Salgado, O.D., director of optometry at Salud Para La Gente in Watsonville. “There is not a lot of care where they came from, especially in the smaller towns in Mexico where they have to travel to a big city.” Salgado often sees patients who wait to come in until they are seeing spots or lose vision in one eye.

Fewer doctor visits means that the undocumented aren’t receiving important medical screenings, such as mammograms, cholesterol tests and colorectal exams. And waiting to go to the doctor until symptoms are unbearable means that the undocumented are often at more advanced stages of disease once they do go to the doctor—which results in more expensive and extensive treatment, and more risk to the patient. It also results in a higher probability of emergency care. When this high-cost care is written off as charity or bad debt, much of it is funneled back to taxpayers in the end.

A 2013 Health Access report states ,“Study after study indicates that the long-term uninsured (including the undocumented) simply go without care and that when they receive care, the financial burden of that care is great.”

“I don’t go to the doctor—only for emergencies,” Santa Cruz resident Damaris Espinoza* says in Spanish. “When I go, I go with fear of the cost.” She explains that when she seeks care at the county clinic, she has to miss a day of work because wait times are so long. And even though the clinic charges a sliding- scale fee, any amount she pays takes much-needed resources away from her family of five. So when she had symptoms of a urinary tract infection, she ignored them in hope they would go away on their own.

“After I’d had a high temperature for a week, I went to the emergency room,” says Espinoza. “The doctor said I had swine flu. They gave me [anti-viral] medicine for the flu and sent me home. At three in the morning, my temperature was higher than before. My clothes were wet with sweat. I was afraid so I went back. But they said the same, and that I should wait three days then check back if I wasn’t better.”

Three days later, her condition had deteriorated to the point where she thought she might die. So she returned to the emergency room, where they examined her and did some tests. That’s when they discovered the infection had passed to her kidneys. She was admitted to the hospital, where she stayed for 10 days. After talking with the hospital’s financial counselors, she was able to get a discount on her bill—but it still totaled $6,000, an amount she knew would take her years to pay.

“When the bill arrives, I’m afraid that if I don’t pay they’ll report me to immigration,” Espinoza says. “They know I’m without papers because I don’t qualify [for benefits under the ACA].”

Fear of deportation for unpaid medical bills is a theme echoed among several people interviewed for this story—and the fear can be strong enough to prevent them from seeking subsequent care even under dire conditions. Ramirez tells the story of an undocumented co-worker and friend who was in an automobile accident in the Santa Cruz Mountains.

“They had to take him in a helicopter to Santa Clara,” says Ramirez. “He broke his jaw, his ribs and his shoulder. He had to have surgery on his jaw. He couldn’t work for a month.” The bills totaled $40,000—an inconceivable amount for a construction laborer making $15 per hour.

“He paid the first couple of bills, but then he stopped. The payments didn’t make a difference—he’d be paying for the rest of his life,” says Ramirez.

Later, Ramirez’s friend got sick. He complained that his stomach hurt for days, and it only got worse. When Ramirez suggested he go to the doctor, his friend responded, “I can’t because I owe. If I go, they’ll put me in jail and they’ll deport me.” Instead, his friend tried herbal remedies. Finally, when he could barely walk, Ramirez took him to the emergency room. They admitted him right away, and he was hospitalized for several days to treat a severe gastrointestinal infection.

“The doctor said if I hadn’t taken him in, he wouldn’t have lived two more days,” says Ramirez. “My friend would have died.”

Patchwork Safety Nets Provide Uneven Coverage

For California’s estimated 1 million undocumented, uninsured residents, it turns out that the quality of health care they receive is determined by their zip code. Under Section 17000 of the California Welfare and Institutions Code, each county is responsible for providing basic care for its medically indigent residents. But that responsibility is one that counties interpret differently. While nine counties cover indigent health care costs for undocumented people, most counties don’t include undocumented people in their definition of “resident.” In addition, counties vary widely in their income eligibility thresholds and the services they offer.

“Our question is this: Is it appropriate that the care you get is dependent on who you are and where you live?” asks Anthony Wright, executive director of Health Access California.
Monterey County has the highest proportion of undocumented immigrants in the state, with the undocumented comprising nearly 14 percent of the county’s population, according to a 2012 Public Policy Institute of California report. Undocumented workers provide the labor that drives the county’s $4 billion agriculture industry, as well as fill hospitality jobs that support the county’s $2.3 billion tourism industry. Yet the undocumented in Monterey County are excluded from the county’s medically indigent adults (MIA) program.

Now that the majority of people who did qualify for the MIA program have shifted to Medi-Cal, the program has dwindled in size, says Elsa Jimenez, assistant director of health with Monterey County. “This coming year, we’ll get $2.5 million less from the state, but since uncompensated costs have gone down, our budget is at the same level, or maybe even slightly increased.” 
Still, approximately 26,000 undocumented immigrants remain uninsured in the county, estimates Ignacio Navarro, associate professor of policy analysis at CSU Monterey Bay. Of these, approximately 17,000 are living below 138 percent of the Federal Poverty Level (FPL) and so would have qualified for Medi-Cal if it weren’t for their immigration status.

The county to the north, Santa Cruz, has a smaller proportion of undocumented residents (8 percent of the population), but it covers them in its indigent care program, MediCruz. Now that much of the county’s indigent population has shifted to Medi-Cal, the primary population that MediCruz covers is undocumented people in need of specialty care, says Amy Peeler, the county’s chief of clinic services.
But the glitch is that MediCruz only covers those with incomes up to 100 percent of the FPL. This means that, in order to qualify, a person in a family of four would have to live on less than $1,987.50 per month—which barely covers the rent for an apartment, if at all, in this coastal California town.

“There’s no way you can live on that here,” says Michael Beaton, director of administration for the Santa Cruz Health Services Agency. “Budget constraints haven’t allowed an increase. The MediCruz program is funded by health realignment and county general funds, and since 2008 both pots have decreased.”
He adds that federal and state reimbursements from the county’s increased Medi-Cal population have offset some of the losses, but the budget is still $2 million below the 2008 level. Though the county is committed to supporting the Healthy Kids program, which covers undocumented minors, Beaton says that for undocumented adults, “we’re stuck providing limited services to people in need.”

“Counties that don’t provide care to undocumented people or that don’t go above 100 percent of the Federal Poverty Level have very few people they are responsible for,” says Wright, adding that this should give them some freedom. “We’re ultimately looking for a statewide solution, but [meanwhile] we’re encouraging counties who don’t care for the medically indigent to take a look at how they are now seeing savings … [and] use this as an opportunity to provide a coverage-like product to the remaining medically uninsured.”

For example, Los Angeles County recently unveiled My Health LA, a partnership between the county and community health clinics that will provide free, comprehensive health care to all residents who are living at or below 138 percent of the FPL and are ineligible for state or federal programs. (The county’s Ability-to-Pay Plan includes discounted health care for residents with incomes above 138 percent of the FPL.) San Francisco County’s program, Healthy San Francisco, provides free or low-cost comprehensive health care to all residents with in- comes up to 500 percent of the FPL who are ineligible for state or federal programs.

“If a county doesn’t take responsibility for the undocumented, it doesn’t mean undocumented immigrants won’t get care—it just means that counties won’t pay for their care,” says Dylan Roby, assistant professor at UCLA Fielding School of Public Health. They can still seek care at community health clinics for a sliding fee. Community health clinics are a vital part of primary care within the safety net, though they are limited in services because they don’t have resources to provide specialty care.
Undocumented people can also get treatment at any hospital emergency room, and they may qualify for a charity care pro- gram or emergency Medi-Cal. This is one way in which the Medicaid expansion has benefited undocumented immigrants, says Roby. “With the expansion for childless adults, there is also all of a sudden a new population of undocumented childless adults who can get emergency Medi-Cal today. But it’s still very temporary.”

According to the California Department of Health Care Services (DHCS), an undocumented person who would otherwise be eligible for Medi-Cal is eligible for emergency services if he or she has a medical condition “that results in such pain or other symptoms that the absence of immediate medical attention could be expected to result in placing the patient’s health in serious jeopardy; cause serious damage to bodily functions; or seriously harm any body part or organ.”

Once the patient is stabilized, the medical condition is no longer considered an emergency, and benefits cease. The patient is responsible for finding a way to pay for any continued care for the condition from that point on.

No Papers, Few Options 

On an average weekday morning, the waiting room of the Sanborn facility of Clinica de Salud del Valle de Salinas (CSVS) is overflowing with patients. Young mothers hold crying toddlers on their laps, while old people lean forward in their seats, resting on walkers. People of all ages sit in chairs or linger near the doorway, each of them hoping to be seen by a doctor.

The clinic is located in East Salinas—a neighborhood crippled by poverty and gang violence. Nestled in the Salinas River Valley, the town of Salinas is fringed by strawberry, lettuce and artichoke fields. A high proportion of Salinas residents are undocumented immigrants who work in Monterey County’s lucrative agriculture industry. Here, they live behind the “lettuce curtain” that separates them from the golf courses and rocky coasts of the affluent southern Monterey Peninsula. For many of them, community health centers such as the Sanborn clinic provide their only source of primary and preventive health care.

Over the past year, the network of nine clinics within CSVS has become more crowded as people who are newly insured by both Medi-Cal and Covered California come in seeking services. It seems the oft-heard prediction that the newly insured would leave community health centers hasn’t been realized so far—partly because a large number of physicians in Monterey County don’t take Covered California insurance plans, says Max Cuevas, M.D., CEO of CSVS.

“It’s been a positive effect overall,” he explains. “Our total patient count has increased by 5 to 7 percent [since 2013]. We welcome the change that has brought in more people with coverage to put money where it’s needed.” As a federally qualified health center, CSVS is required to provide care for everyone, regardless of ability to pay. Those who don’t have insurance pay for services on a sliding fee scale, and their care is subsidized by increased Medi-Cal reimbursement rates.

Even though CSVS is in better financial shape post-ACA, there is still a limit to what the clinics can do for undocumented, uninsured patients in need of specialty care. “It’s really difficult to try to plug these people into the system,” says Cuevas. “It’s an ethical dilemma. They are working and contributing to our economy, but then they don’t receive any services when they need them.”

Jose Torres, medical assistant at the Sanborn clinic, tells the story of an undocumented machinery worker in his 40s who came in with what he thought was a fungal infection on his thumb. He’d had a black spot under his thumbnail for years. Then, one day his hand slipped on a machine, and his thumb- nail fell off. The black spot started to grow.

“He started putting fungal ointment on it,” Torres says. “He didn’t have insurance so he was trying to take care of it himself.

When he finally came to the Sanborn clinic, the doctor took a biopsy of the tissue and sent it to the lab. The results came back showing the patient had melanoma—a deadly, fast-spreading cancer. The doctor immediately referred the patient to a local dermatologist, but when the patient went to the referral appointment, he was told he’d have to pay $7,000 for an MRI to see if the cancer had spread. He left without the diagnostic procedure. Next, the Sanborn doctor referred the patient to a medical center in the Bay Area. But the patient returned to say that no one there would see him because he didn’t have insurance.

“At that point, the doctor got on the phone,” says Torres. The doctor called the medical center to advocate for the patient and the severity of his situation. Later, the medical center called back to say it had approved the patient for a charity program. It would amputate his thumb and, if the cancer had spread, would give him the treatment he needed. But it was too late. The patient had already left for Mexico, where he had his thumb amputated. Whether the cancer had spread, nobody knows.
“We worked so hard for the patient,” Torres says, his eyes cast downward, hands folded between his knees. “We felt so bad—we had the green light and he was just gone.”

Jon Yoshiyama, M.D., associate medical director for CSVS, says that roadblocks like this are common when treating the undocumented. “Every day you see patients that really need to see specialists or need special medicine, and they can’t [get treatment] because they don’t have insurance.”

Even when charity care or government-funded programs are available, they may not be enough. Ivan Ochoa, another medical assistant at Sanborn, tells the story of a patient who was diagnosed with breast cancer. She was eligible for treatment through the DHCS, but because she was undocumented she couldn’t receive benefits through the federal Breast and Cervical Cancer Treatment Program (BCCTP), which allows full- scope Medi-Cal benefits. Instead, she received benefits through the state-funded BCCTP, which is time limited, providing breast cancer treatment for a maximum of 18 months.
“She saw a specialist and she ended up getting a double mastectomy,” says Ochoa. “BCCTP covered the surgery and they covered most of the chemo, but she’s at the point where she has to start paying. She’s [still] going through chemotherapy, she has no insurance, and she can’t pay. Things are getting tough for her and she’s depressed.”

“The reality is that if you can’t pay, there will be restrictions on what services you can get,” says Pourat. “When people don’t have coverage, they may not get as much follow-up care or treatment…. All these public programs have resource constraints.”

Searching for a Statewide Solution

“It’s a very political situation,” says Navarro. “Immigration reform is something that desperately needs to happen, but it doesn’t seem like it’s going to happen anytime soon. So [until then] the conversation needs to change: How do we provide coverage for undocumented people beyond what the safety net provides?”

Given the uneven health care options for undocumented immigrants across California counties, a statewide solution seems most promising. Lara’s Health for All Act (SB 1005), which would extend eligibility for Medi-Cal benefits to un- documented immigrants who meet other qualifications, would also create the California Health Benefit Exchange Program for All Californians, an exchange that would mirror Covered California but be open to undocumented immigrants.

A study by UC Berkeley’s Center for Labor Research and Education and the UCLA Center for Health Policy Research estimated that, under the bill, a 2 percent increase in state Medi-Cal spending would provide 690,000 to 730,000 undocumented Californians with preventive health care.

“You can’t just abandon one segment of the population,” Pourat says. “They may not have legal status, but they are living here, working here and contributing to the community. You can ignore the fact that they aren’t getting basic services or do something about it—because later on you have to pay the price. They’ll get sick and go to the ER, or they won’t be able to work, and that’s a problem. It’s important that everybody in the community is healthy.”

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