Nowhere Else to Go: Caring for Undocumented Patients in Rheumatology
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It is likely a story most rheumatologists have dealt with: A male patient with severe myositis, barely able to walk, who is challenged at multiple steps to get access to treatment. A muscle biopsy would be too expensive — such big-ticket items are not covered very well — and a small safety-net clinic would be unable to provide such a service. The patient had worked as a landscaper, in the intense summer heat of Phoenix for years, and had been the sole breadwinner for his family. Now, his wife would have to shoulder the burden of caring for him and their children.
Those circumstances alone would be daunting. However, this patient was also an undocumented immigrant, and as such was barred from participating in Medicare, Medicaid and the Affordable Care Act marketplace. His employer did not offer insurance. There were no disability benefits.
“That is a real challenge,” said Eric Peters, MD, a rheumatologist with Arizona Arthritis and Rheumatology Associates, who has been treating this patient for 6 years at the Society of St. Vincent de Paul free clinic, in Phoenix, where he volunteers. “You don’t realize that all the systems we have in place to help out in these situations are not accessible to an entire population of people here.”
Limited Options, Limited Access
According to the Pew Hispanic Center, there were an estimated 10.5 million undocumented immigrants living in the United States as of 2017, representing approximately 3% of the country’s total population. As many as 66% of undocumented immigrants have been living in the United States for more than 10 years.
A report published in July 2019 by the Henry J. Kaiser Family Foundation found that undocumented immigrants are at high risk for being uninsured due to limited access to coverage options. According to the report, the uninsured rate for non-elderly undocumented immigrants was 45% as of 2017.
In addition to being excluded from Medicare and the ACA marketplace, as well as most Medicaid and employee-based options, the children of undocumented immigrants are ineligible for the Children’s Health Insurance Program (CHIP). Only six states — California, Illinois, Massachusetts, New York, Oregon and Washington — and Washington, D.C., have state-only funds to provide Medicaid coverage to income-eligible children regardless citizenship status. In addition, although low-cost community health centers, or “safety-net” clinics, can provide primary care services, access to specialty care, like rheumatology, remains difficult.
On top of all that, shifting policies under President Donald Trump have caused more undocumented immigrants to be fearful of seeking out what few programs are available to them, according to Ashira Blazer, MD, MSCI, of New York University Langone Health and Bellevue Hospital Center.
“The more this becomes a contentious issue, the more people are not going to feel safe or comfortable seeking care,” Blazer told Healio Rheumatology. “Having a society where people are ill and not taking care of themselves or seeking care is a really big problem. It deteriorates society for all of us.”
According to Blazer, New York City’s Health and Hospital Care System provides a “great safety net” for all residents regardless of citizenship and immigration status. However, that system often partners with other facilities that are not as open, which she said can sometimes lead to issues for patients.
“For example, I can see a patient who has lupus or any other autoimmune condition, but if I have to refer them for physical therapy, my options are limited,” Blazer said. “Or, if I need to give them an infusion, my options are extremely limited. They are going to need to get their infusions at Bellevue, if that is possible.”
In Phoenix, which has no such public system, access to care for undocumented populations is even more restricted, Peters said.
“The fact that they can’t get insurance and they can’t get on the government programs — unless it’s an emergency — limits them affording routine medical care even at the county hospitals, which now mostly do not take undocumented migrants unless it’s an emergency,” he said. “For the most part, they don’t have medical care, in Arizona at least. Consequently, it’s left to the free clinics to kind of help out.”
Unique Challenges
Located in San Francisco, Jinoos Yazdany, MD, MPH, of the University of California, San Francisco, practices rheumatology in a city that provides university health care to all residents regardless of citizenship or immigration status. In addition, she practices at Zuckerberg San Francisco General Hospital, the only safety-net facility in the city, which provides care to vulnerable populations.
However, although she and her patients are rarely forced to contend with limited access to primary or rheumatology care, that does not shield them from one major barrier unique to undocumented immigrants: Fear.
“In recent years, I am seeing high levels of stress and extreme anxiety in our undocumented patients,” Yazdany told Healio Rheumatology. “Many feel paralyzed by fear that their families will be torn apart, and this extreme anxiety impacts their health. I am seeing more mood disorders like depression and anxiety, sleep disorders and chronic widespread pain in this population over the last several years as our political climate grows more tense.”
Increased crackdowns on undocumented immigrants announced by the Trump administration, as well as recent reports of widespread raids by U.S. Immigration and Customs Enforcement, have substantially increased fears among immigrants, including those lawfully present and the citizen children of those who aren’t, according to the Kaiser report.
This fear can often lead to patients putting off or avoiding needed care, with sometimes fatal consequences, Yazdany said.
“Fear of deportation is universal among undocumented patients, and this often leads people to delay seeking care,” she said. “I have seen many cases where undocumented immigrants have lost organs or even died because of delays in seeking care. Once we are able to see them in our clinics and gain their trust, these fears are often abated, although they never go away.”
Other unique hurdles to care among undocumented patients are more institutional. For example, Blazer said she has seen pharmacy benefits becoming increasingly contingent on citizenship status.
“I have had patients who are taking, for example, Humira or any of these biologic drugs, and then suddenly not being able to get them because — due of an immigration issue — their coverage has been dropped,” she said. “So, now we have to find another avenue for them to get that medication. I think that has been the biggest challenge — disruptions in care.”
According to Blazer, some insurance companies have changed their qualifications for coverage, excluding individuals based on citizenship.
“Before, the citizenship question was not an issue, but it has become an issue,” Blazer said. “There are situations where, all of a sudden, the insurance company is asking about citizenship status, and now the patient is unable to get coverage.”
Even relatively mundane challenges, such as the high cost of medication, grow more complex when treating patients who are undocumented, as those with minimal insurance can fall into a “doughnut hole,” or gap in coverage, Blazer added.
Peters noted that part of the challenge is knowing which of the companies who produce biologic medications offer programs for compassionate use, and being able to fill out the right paperwork to secure those drugs for patients.
“However, with some of these pharmaceuticals, even with those programs, they make you check off whether the patient is an American citizen and, consequently, drugs aren’t available to them,” he said.
Fighting for Patients
According to Peters, writing letters for patients who can’t access any insurance coverage is often necessary to secure needed medications.
“It’s almost, in my view, often times easier than the hassles and hurdles we have with patients who have minimal insurance, where we have prior authorizations and things like that,” he said. “We have some companies that, frankly, don’t ask a lot of questions, and that makes things a little bit easier. However, I’m lucky enough to have a clinic that helps us through that. We can usually streamline that pretty well.”
Blazer, who also often finds herself writing to insurance and drug companies, said physicians often need to be “a little more hands-on” when treating patients who are undocumented, and sometimes find “creative means” of making sure they can get treatments like infusions.
“I find that I have to do a little more legwork when my patients are undocumented, and do a little more connecting, because I know they don’t have access to as many services outside of our relationship,” Blazer said. “Just knowing the available resources within your institution is also important. When you work with that population, you have to make sure you are well educated so that you can help them navigate the health care system.”
Supporting undocumented patients can also sometimes mean writing letters to federal agencies, she added.
“I had a situation where a patient’s husband and primary caregiver was deported,” Blazer said. “I ended up having to write a number of letters on her behalf to try to keep him in the States, detailing her history and the reasons she needs this support system and his role in that.”
According to both Blazer and Peters, it is important for physicians to make patients who are undocumented feel comfortable and safe in their practice. Most importantly, this means not asking patients about their status, they said. However, if the patient offers this information, physicians should discuss how the added stress they are feeling could impact their health.
“If I actually know this is an issue for them, I try to take a moment to talk with them about the stress in their lives, because that also influences their health care and also because it lets them understand that, as a physician, you are on their side,” Blazer said. “You are in a partnership with them.”
Expanding Care
In June 2019, California approved a $260 million plan to expand its Medicaid program to include income-eligible undocumented young adults aged 25 years and younger. That same month, New York City announced it would spend $100 million per year to expand health care coverage to 600,000 residents without insurance, including those who are undocumented.
“An ambitious goal would be to bring undocumented patients under current health insurance systems, such as Medicaid,” Yazdany said. “In the meantime, ensuring that our local safety net community clinics and health systems are as robust as possible is important to addressing the health needs of this population. Many rheumatologists work or volunteer their time in these settings, and the American College of Rheumatology has recently started a task force, called Volunteers to Expand Rheumatology Access, VERA, to ensure that we connect rheumatologists to volunteer opportunities.”
However, these programs remain controversial, as debates roil across the country over whether and how much public funds should be spent on providing care to those who are undocumented.
Still, such programs and efforts have tremendous merit, argued Peters, even if the politics involved currently present an uphill battle.
“I think government support of these health care projects is very reasonable, although it is politically charged,” he said. “I also think that opening up our Medicaid population to undocumented immigrants who have come here and developed medical problems is also worthwhile, but that has some major hurdles to get through the politics of it all.”
“These are people — you can argue about how they got here, but they are people with worth and you can’t abandon people with problems like these medical conditions that they have through no fault of their own,” he added.
According to Blazer, there are both moral and economic cases to be made for expanding care to undocumented patients, particularly as primary and outpatient care remain far less costly than emergency services.
“However people feel about it, everyone in a society plays a role in that society,” Blazer said. “They do not go away when they get sick. They need care, and the best time to treat chronic illness is early.”
“Also, it’s just wrong to deny them care,” she added. “Regardless of citizenship status, they are humans and they have human rights, and living healthfully should be part of that. Still, if you need an economic argument, the economics definitely support caring for someone when they are relatively healthy vs. when they are gravely ill. However, morally, we are compelled.” – by Jason Laday
For more information:
- Ashira Blazer, MD, MSCI, can be reached at 301 E. 17th St., Suite 1410, New York, NY 10029; email: ashira.blazer@nyulangone.org.
- Eric Peters, MD, can be reached at 4550 E. Bell Road, Bldg. 8, Suite 170, Phoenix, AR 85032; email: eric.peters@azarthritis.com.
- Jinoos Yazdany, MD, MPH , can be reached at 1001 Potrero Ave., Room 3301, UCSF Box 0811, San Francisco, CA 94110; email: jinoos.yazdany@ucsf.edu.
Disclosure: Blazer, Peters and Yazdany report no relevant financial disclosures.