Expanding Access to Medical Care Services to Undocumented New York City Residents Without Health Insurance: Reflections on the ActionHealthNYC Study

In “ActionHealthNYC: A Randomized Controlled Trial to Evaluate a Health Care Access Demonstration Program for the Uninsured,” Sood et al. (p. 1318) make a compelling argument that an intentional commitment to engage those who are both undocumented and uninsured can increase identification of a primary care provider and medical utilization.

The authors describe their 2016–2017 efforts to increase primary care access among those who were both undocumented and without health insurance. The ActionHealthNYC study randomized enrolled participants into either intervention or control groups, whereby intervention patients had appointments scheduled for them and were offered a standardized copayment (patients did not have to negotiate payments themselves), a written care plan was created, patients were provided an access handbook, reminders were sent for appointments, and follow-up calls were made for missed appointments. Patients with certain underlying conditions or at risk for homelessness were eligible for enhanced care coordination services. Services were delivered in the patients’ preferred language.

Study findings are consistent with improved access to care: intervention recipients were 1.2 times (58% vs 46%) more likely to report a primary care provider, 1.2 times (91% vs 77%) more likely to have seen a primary care provider in the last 9 months, and 1.5 times (4.1 vs 2.9 visits) as likely to have had more medical visits than control participants.

Importantly, study recruitment began during the 2016 presidential campaign, when candidate Trump used anti-immigrant rhetoric to stoke economic and safety fears among the electorate. Within a week of his inauguration, President Trump issued executive orders that included provisions to hire 10 000 more immigration officers, withhold federal funding from sanctuary cities, build a southern border wall, and prohibit entry of residents from seven predominately Muslim nations. Anti-immigrant rhetoric, regulations, and executive orders continued throughout the study’s follow-up period and included changes to the Deferred Action for Childhood Arrivals (DACA) policy, removal of protected status for refugees who had fled natural disasters, and changes to rights for asylum seekers.¹ Medical providers across the country reported that those without documentation shunned health care services during the Trump administration.² If they sought treatment, many avoided bringing family members for fear that if the person seeking treatment were to be detained, family members might also be subjected to immigration proceedings.

Several ActionHealthNYC study features are worth highlighting. First, during this period of heightened national political scrutiny of undocumented residents, over 6000 potential participants responded to advertisements, and 2351 of those who responded completed an informed consent process and the first round of a 75-question assessment for what is largely perceived to be a New York City government-operated health care system. Second, nine to 12 months after they completed the initial assessment, nearly half (n = 1067) of the original participants completed a follow-up survey. Third, even as the intervention group significantly increased engagement across all stated outcomes compared with controls, both groups documented considerable gains. For example, both the intervention and the control groups increased their primary care provider identification from approximately one quarter at baseline to 58% and 46%, respectively. In addition, at baseline approximately 60% of both groups had seen a primary care provider in the last 12 months; nine months later, participation in the intervention group increased to 91%, but participation in the control group also increased to a not-so-paltry 77%. Similar increases were seen for both groups regarding number of medical visits, attempts to make a medical appointment, and the ability to secure an appointment as soon as needed. One of the key takeaways from the study seems to be that if a trusted health care system engages vulnerable communities, even under hostile political conditions, patients will respond and engage.

Important as well are the questions that were not measured. For example, in a time of overt political threats, many of which came to fruition, why did so many people (approximately 6000) who were vulnerable to federal immigration actions respond? Why did nearly half of those who initially responded and were eligible to participate not complete the application? Why did more than half of the baseline participants who managed to complete the application and the initial assessment not complete the follow-up assessment nine months later? Why did so many vulnerable residents (n = 1067) complete the study (the incentive alone is an unsatisfying answer because a $30 honorarium and an $11 dollar metro card do not go far in New York City), and why did a considerable number of control participants engage health care services more deeply nine months later without the intervention assistance? To be clear, the authors assessed differences between those who completed the first assessment but did not complete the follow-up questionnaire and those who did, and they explored differences between intervention and control groups to understand the strength of the results. However, given the intensity of the political climate, the questions related to participation and nonparticipation persist.

Results from this study and answers to the “why” questions remain important as states attempt to increase access to care by reducing the number of uninsured. With the help of the Affordable Care Act (ACA), New York made considerable gains. The uninsured rate in New York State declined from 10.7% in 2013 to 5.2% in 2019. However, in 2016 “noncitizens” were more likely to be uninsured than naturalized and native-born citizens (24.1% vs 5% and 3.8%, respectively).⁴ Importantly, undocumented residents are not eligible for Medicare or Medicaid (with the exception of “Emergency Medicaid”), and under the ACA are not allowed to purchase insurance in health insurance exchanges. However, those without documentation may be treated at Federally Qualified Health Centers.

There are additional unanswered study questions, including the extent of the out-of-pocket costs that participants experienced, since many tests, follow-up medical services, and medications for chronic conditions (e.g., hypertension, diabetes, asthma, depression) are not covered under Emergency Medicaid services. In all likelihood, financial support for the one-year study was drawn from the indigent care pool, as 70% of NYC Health + Hospitals’ adult population is insured by Medicaid or has no insurance.⁵ Still, questions about the participants’ cost burden connect to other questions about the role of screening and the responsibility for ensuring access to (and payment for) ongoing medical treatment, management, and retention for vulnerable populations once patients have been engaged.

Finally, the article raises a fundamental question for those of us in public health: What is it that we owe those who live here? In 2017, at the time of the study, approximately six million of the 10.5 million undocumented immigrants residing in the United States still needed health insurance.⁶ In a high-income nation, I submit that there is an obligation to treat those who are already living here. I am not alone. At the second Democratic presidential debate in 2019, nearly every Democratic candidate (including President Biden) affirmed their support for extending health care coverage to undocumented immigrants.⁷

As much progress as New York has made to increase health care access, its health care costs remain considerably higher (attributed to price increases) than the national average.⁸ Considering anticipated COVID-19–related tax shortfalls, most states cannot consider supporting insurance expansions without federal support. Perhaps the Biden administration will remember the hand that the future president raised at the second Democratic presidential debate in favor of expanding health care coverage to those who were undocumented and will expand access to the health insurance exchanges, Medicaid, or Medicare. In the interim, given the myriad health conditions that may have worsened as those without documentation delayed needed medical visits, perhaps Congress could approve a supplemental appropriation for Federally Qualified Health Centers to replicate key features of the ActionHealthNYC study, including intentional and targeted outreach, supportive scheduling and follow-up, language-appropriate services, and financial support for the delivery of a defined set of primary care services to allow Federally Qualified Health Centers to set a standard copayment or to waive sliding-scale fees, at least until economic conditions improve.