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A Talk with Nancy Ordover

Nancy Ordover, PhD, has served on the International Task Team on HIV-Related Travel Restrictions, convened by UNAIDS and concerned with issues relating to the human rights, public health, and economic impact of HIV entry bars on immigrants, migrants, refugees, asylees, detainees, and other mobile populations.

Bob Huff: Roughly 60 countries in the world, the United States among them, have restrictions on whether people with HIV infection can legally cross the border as a tourist or worker or immigrant. The U.S. restrictions have been generically termed the “HIV travel ban”—but it’s about more than just travel, isn’t it?

Nancy Ordover: Yes, much more. The word travel suggests that people are barred from coming to the United States for vacation or for business. A more comprehensive description of these types of restrictions has been adopted by the International Task Team on HIV-related Travel Restrictions: HIV-related restrictions on entry, residence, and stay, which refers not only to restrictions on travel but also to restrictions on immigration, migration in search of work, and securing residency status.

When I speak or write about the U.S. policy, I encourage people to resist calling it a travel ban and to instead use the term entry bar with the understanding that we are dealing with barriers at two points of entry. First there is the literal barrier at the port of entry; but finding themselves on this side of the U.S. border, unable to adjust their immigration status, immigrants’ entry into the workforce and the health care system is also barred, as is their full participation in civic life and their access to housing and welfare benefits. It is as if they have been caught in a vestibule between two doors. This is where U.S. policy becomes deadly.

BH: What are the current rules governing people with HIV seeking to live in the United States?

NO: Since 1987, people with HIV have been denied entry to the United States. And by entry I mean they have not been allowed to come into the country or to change their residency or immigration status if they are already here except in extremely limited circumstances. The ban started out as an administrative rule but became statutory in 1993 when it was enshrined in the Immigration and Nationality Act [INA]—a move championed by Jesse Helms. It remained a statutory ban until July 2008 when both chambers of Congress voted overwhelmingly to reauthorize the PEPFAR [President’s Emergency Plan for AIDS Relief] program. That bill included language striking the HIV entry bar from the INA. There was debate on this language, and on the larger bill itself, which Senator Dana Rohrabacher [R-CA] characterized as “humanitarianism gone wild.” But the vote was not even close, and PEPFAR was signed into law a few days later. This was an important first step, but it hasn’t changed anything for immigrants, residents, travelers, or visa seekers with HIV. It simply brought us back to where we were from 1987 to 1993. It returned authority for determining the admissibility of HIV-positive people to the Department of Health and Human Services [HHS]. In other words, the entry bar went from being statutory back to being administrative. And it did plenty of damage during its first six years, when it was merely administrative. The administrative ban will remain in place until a new rule can be written, made available for public comment, then finalized. As of today, we have not seen the language of that new rule, though we have been told repeatedly that it is in the works.

Here’s how the policy works on the ground: If you are coming to the United States from a Visa Waiver Program [VWP] country and you do not have HIV, you do not need a visa to enter. However, if you are HIV-positive, the only way you can get into the country legally is to disclose your status and get a waiver for a short-term visit. If a waiver is granted, it is imprinted on your passport. It is not an easy waiver to obtain, and once you use it, you are committed to it—you’ve committed yourself to going through the process any time you want to come to the States, and you’ve pretty much shut the door on anything but a short-term visit. The Department of Homeland Security issued some changes in 2008—a new option that is supposed to “streamline” the process for short-term visitors with HIV if they go this route. But this process retained and/or added some very problematic criteria for entry, and made appeal of a waiver denial practically impossible. You have to prove your HIV is in a “controlled state,” that you have a sufficient supply of ARVs [antiretroviral medications], that you have adequate assets or insurance in case you need medical care here, etcetera. So, there is a financial bar here as well that applies to people with HIV. And who decides what constitutes a “controlled state” or sufficient supply of medication? Not a doctor, but a consular officer. And even if you get a waiver, it’s only good for a visit of 30 days or less. Of course, you have the option of not disclosing your status, but if your HIV drugs are found by Customs, you’re in trouble. Currently there are 35 VWP countries. Nearly all of them are in Europe. That means anyone coming from the global south—most of Asia, Africa, and Eastern Europe, whether they are HIV positive or not—needs a visa to come to the United States. These folks have even fewer options if they are positive and are trying to get into the country.

There can be serious—and sometimes deadly—consequences for people with HIV seeking permanent resident status

But the most serious—and sometimes deadly—consequences involve people who are seeking permanent resident [green card] status. There’s a mandatory medical exam that includes an HIV test. If you test positive, that’s it: the entire green card process stops and you are unable to adjust your status. In a few instances, people have been able to get a green card if they have a relationship with someone who is able to sponsor them, but in general they face an even tougher standard than other immigrants if they want to seek an exception. And in this climate where there is so much animosity toward immigrants in general and so little due process, that’s really saying something. Only a spouse, parent, or child has standing to petition for an exception. People without HIV can be sponsored by siblings or employers, as well—but these relationships are considered insufficient for people with HIV.

Most people end up in limbo — without a recognizable legal status, which means no benefits, no ability to get a job with benefits, and no access to care and treatment. I often tell this story—I’ve changed the name: About 10 years ago there was a 17-year-old I’ll call “Michael” who came from Guyana to get away from a very violent situation at home. He came through Miami and was detained at the Krome Detention Center for months. He was finally given what is called a “credible fear” interview. The authorities believed his father would kill him if he returned home, so he was released to the custody of relatives and he moved in with his aunt and uncle in the Bronx. After a while, he became extremely ill. He went to the emergency room and was hospitalized for several weeks. Michael’s HIV test came back positive, but by this time he had pneumocystis pneumonia and was diagnosed with AIDS. His aunt and uncle threw him out. He couldn’t go back to Guyana. If his father didn’t kill him, then the lack of available treatment there would. Without recognizable legal status, he could not access housing assistance, medical benefits, or food assistance in the United States. He died in 2003, age 23.

This is a young man who was killed by the U.S. entry ban, even though he managed to get out of detention. Today accomplishing even that would be much more difficult. People who can’t get a green card are at higher risk of being detained by Immigration and Customs Enforcement [ICE]. Even if they ask for asylum there is a good chance they will be placed in detention immediately and indefinitely, and that is a dangerous place for anyone, particularly for someone with HIV.

BH: What are conditions like for people held in detention who have medical needs?

NO: Immigrant detainees in the United States are held in local or county jails, with the general population; ICE detention centers; private, for-profit detention facilities; or federal prisons. Guidelines for medical care in ICE facilities seem designed to be litigation-proof. There are few enforceable standards for detention. We know of at least 90 people who have died in ICE detention, but ICE is not required to make these deaths public, so there are certainly deaths we do not know about. One we do know about is Victoria Arellano’s.

People are punished by the system whether they have HIV or not

Victoria was trans[gender], and had been identifying and living as a woman for years, but during her detention she was housed in the men’s dormitory. She was on dapsone when she was sent to the San Pedro detention center. They cut off her medication, despite the known consequences of discontinuing this antibiotic — namely, the onset of treatment-resistant pneumonia. Victoria’s health deteriorated rapidly. She complained of severe nausea, headaches, cramps, and back pain. Other trans women placed in male facilities have reported violence at the hands of other detainees and the staff, but the men detained with Victoria Arellano responded with profound humanity. They cared for her; they advocated for her. They signed a petition appealing for medical care for Victoria. They staged a protest, refusing to line up for a head count before bed. All at great risk to themselves. And they were punished for it.  One week before her death she was taken to the infirmary and given an incorrect antibiotic. Again, the standard of care for people living with AIDS was ignored. It was ineffective. When Victoria returned from the infirmary, she began vomiting blood. The guys she was with again intervened and she was finally taken to a hospital, where she died shackled to her bed.

I should mention that legislation has been introduced in the House of Representatives that would set some standards of care and oversight for immigrant detention, including the mandatory reporting of deaths in custody.

I don’t know if Victoria ever tried to adjust her immigration status and was denied or discouraged because of her HIV status or her gender identity. But the story of the last few months of her life tells us that the issue of the HIV entry ban and the fallout from the policy are inextricably bound up with larger issues of immigrant justice and human rights.

BH: So this is about much more than travel or even immigration procedures.

NO: Yes, it really needs to be dealt with from a comprehensive human rights perspective. It’s not enough for advocates to talk about the decriminalization of HIV — important as that is. We have to talk about the decriminalization of migration. People are punished by this system whether they have HIV or not. And not just in the United States. We need to look at the larger picture of mobile populations. The real questions concern the rights and freedoms enumerated in International Covenant on Civil and Political Rights, the United Nations Declaration of Human Rights, and the UN’s HIV/AIDS and Human Rights International Guidelines. These are: freedom of movement, freedom from discrimination, the right to privacy, and the right to the highest possible standard of health. Entry bans violate every one of them.

BH: What is the next step for the rule change on HIV entry for this country?

NO: We have been told that we will see a proposal for a new rule soon. We have to be ready to bombard the HHS with comments if we get something that we don’t like. This means we don’t accept any proposal that mandates disclosure of HIV status as a condition for entry or places any kind of designation of waiver or HIV status in people’s passports. But what’s most critical—and I can’t say this often or loud enough—we must not allow the administration to split the ban by lifting it for travelers and some visa holders but keeping it in place for long-term visa-seekers and immigrants. If that happens, it could be years, maybe decades, before an administration returns to the issue and provides any kind of relief for HIV-positive immigrants without green cards. This would translate into another 20 years of people with HIV unable to become legal permanent residents, get decent jobs, or access benefits; 20 more years of immigrants with HIV left homeless, sick, and hungry; left without a country; in some cases, left for dead.

Now, if we get a rule we do like and HHS lifts the HIV entry bar in its entirety, we’re still not done. The PATRIOT Act, the Homeland Security Act, the Welfare Reform Act, and the Illegal Immigrant Reform and Immigration Responsibility Act have all taken a ruinous toll on non-green-card-holding immigrants; making it difficult or impossible for most to access health care or housing; limiting options for asylum and appeal; and effectively criminalizing them. The bottom line is, policies that hurt immigrants hurt immigrants with HIV.

Nancy Ordover, PhD, is the author of American Eugenics: Race, Queer Anatomy, and the Science of Nationalism.

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