A proposal under consideration by the Trump administration is already making New York City immigrants living with HIV reluctant to continue or seek treatment, according to service providers.

In a 447-page proposal released in September, the Department of Homeland Security expanded the number of public benefits to be considered in dismissing green card applications on the basis of an applicant’s potential to become a “public charge.” An individual is currently considered to be a public charge if they are likely to rely on cash-based benefits assistance like Supplemental Security Income (SSI) or Temporary Assistance for Needy Families (TANF).

But under the proposal, immigration caseworkers can deny applications from those who have used non-cash benefits such as Supplemental Nutrition Assistance Program (SNAP), also known as food stamps, housing vouchers and Medicaid.

Mayor Bill de Blasio’s office estimates 400,000 low and middle-income immigrants would be unable to change their immigration status in the future as a result of the public charge rule’s stricter weighing of factors such as education, income, age or health, despite their current non-use of public benefits.

Immigrants seeking a green card and relying on Medicaid for HIV treatment may have to choose to forgo care. Jonathan Ross, M.D., attending physician at Montefiore Medical Group, worries that the effects of the proposal might result in less coverage. “For someone who is living with HIV or is at risk of HIV,” said Ross, “they might decide that getting health insurance would be detrimental to their immigration future and decide not to get insurance and not to get tested for HIV.”

According to the Henry J. Kaiser Family Foundation, Medicaid is the largest source of coverage for those with HIV and helped curb the HIV epidemic nationwide. If the expected changes become official, noncitizens living with HIV could be forced to miss out on drug therapies, physician services, and access to PrEP and HIV testing.

The city's population of foreign-born individuals newly diagnosed with HIV dropped from 993 in 2013 to 688 in 2016. But in 2017, the number of new diagnoses slightly increased to 710.

There are no estimates on how many noncitizens with HIV would be directly impacted by the new rule, or how the proposed changes will affect the decline of HIV infections in New York City. But service providers like Jose Abrigo, senior staff attorney at Queens Legal Services, are seeing the impact first hand.

“My first gut reaction was this is going to create a public health crisis,” said Abrigo. “It would preclude so many people from preventative care, which is one of the key elements to public health and keeping people healthy – and especially for people with HIV.”

Abrigo mainly works with asylum seekers living with HIV, who are exempted from the public charge rule, but rumors have led some of his clients to consider dropping their Medicaid benefits. Those clients tell Abrigo that some of their friends have terminated all sources of treatment. This is what he calls the “chilling effect.”

He says he constantly needs to reassure asylees that they are protected from the proposed changes. “I can’t even imagine how many other people who are asylees or refugees are just getting off of public benefits,” said Abrigo, “because they hear about these rumors going around.”

Karla Alvarez, executive director of Mixteca Organization, a community-based organization, says those rumors trickled down to their location in Sunset Park, Brooklyn. Since the first leak of the proposal in March, Alvarez said community members have withdrawn from services and are refusing to apply for benefits, fearing a misuse of their information. “They’re afraid to get close to a hospital,” she said. “They don’t know how to navigate this system.”

The uncertainty is reflected at NYU Langone in Sunset Park, where the rumors about changes to the public charge rule come on top of months of anxiety about more aggressive immigration enforcement. Larry McReynolds, executive director of family health centers for the hospital, saw an uptick in clients skipping out on treatment as a result of last year’s spike in ICE raids.

According to a joint report by the Immigrant Defense Project and the Center for Constitutional Rights, New York state saw a 1,200 percent increase in arrests and attempted arrests at courthouses throughout New York state in 2017 compared to the previous year. In April, there were 225 arrests in New York City, Long Island and Hudson Valley in what ICE called “Operation Keep Safe.”

The changes to the public charge rule could be felt beyond federal programs like Medicaid. McReynolds notes that the state’s subsidized AIDS Drug Assistance Program (ADAP) program keeps a record of individuals receiving aid. The public charge proposal does not explicitly cover ADAP but, in theory, McReynolds suggests any record of public subsidy gives noncitizens greater incentive to cease treatment.

“People will not get tested for HIV,” said McReynolds, “and then we’re back to the scenario where we were 10, 15 years ago where people don’t know their status and then they continue to spread HIV infection.”

For organizations working to reduce and treat HIV in the immigrant population, the public charge rule complicates an already difficult landscape in reaching out to vulnerable communities engaging in risky sexual behavior.

Mixteca saw fewer than five cases tested positive for HIV last year, but Alvarez is aware of risky behavior in Sunset Park among men who have sex with men who may not identify as gay. Attempts to conduct outreach to this population have proven to be tricky. “To reach them is very complex and not something that would be easy to do,” said Alvarez. “Reaching that particular target population, because of the cultural sensitivities involved, is a very different way of operating.”

Indeed, studies have shown HIV-related stigma among Latino immigrant men who have sex with men. Interviews conducted with this population in Seattle, Washington mentioned cultural factors like “machismo” and religion as deterrents in HIV testing. The Latino Commission on AIDS also cites poverty, increased incarceration, language barriers and mental health vulnerabilities as circumstances for a high risk of infection among Hispanic and Latino men who have sex with men.

Other vulnerable populations could also face a challenge if the proposed changes go into effect. Liaam Winslet, operations officer of the TRANSgrediendo Intercultural Collective, has seen her transgender immigrant clients step away from services. “We’ve seen a lot of colleagues who don’t go to medical appointments or are not seeking treatment,” said Winslet, “because of the fear that is generated by the political climate.”

The collective is based in Jackson Heights, Queens, where they serve immigrants from Central and South America. In 2017, the borough’s largest number of new HIV diagnoses were from those born in Mexico, Central and South America.

In its HIV Surveillance Annual Report released in November, the city’s Department of Health concluded that between 2013 to 2017, transgender folks diagnosed with HIV were more likely to be Latino/Hispanic. Transgender people also reported stigmas surrounding disclosure concerns, public attitudes about HIV, and their own personal concerns. For example, immigrant transgender women have reported not accessing care due to financial struggles, discrimination and stigma. 

Winslet explains the transgender community already faces difficulties in seeking employment and shelter, especially among noncitizens, which has pushed some of her clients to sex work. Due to engaging in risky sexual behavior, sex workers have a high risk of getting and transmitting HIV. That is why every Monday night, the TRANSgrediendo Intercultural Collective goes to clubs and bars in Jackson Heights to promote health and legal services to transgender sex workers in the area.

“The problem is if you’re an immigrant, Latino, Latina, Latinx,” said Winslet, “it’s hard to access health care that will allow, especially in the trans community, to find an adequate antiretroviral medication.”

Facilitating access to health care is one of the ways Governor Andrew Cuomo plans to reduce the number of new HIV infections to 750 by the end of 2020. But Ross is concerned people will stop taking their medication out of fear of being labeled a public charge. “That can be detrimental,” he said, “not only to their personal health but to the community at large.”

On Dec. 10, the public comment period for the proposal in the Federal Register was closed and received more than 219,000 comments. A final rule has yet to be determined by DHS, but if approved, it would take effect 60 days after its publication.

In the meantime, folks like Abrigo are relying on education to rid clients of fear. “Stay healthy, stay on medication,” he repeats to his clients, “and do the best that you can.”