This is the story of how we won; of how a coalition of advocates and activists came together and used a rights-based argument to lift a 23-year-old US bar on the entry, residence, and stay of HIV-positive people. We were told our objective was unrealistic and that our tactics wouldn’t work. Yet, after a little over three years of concentrated effort, victory was ours: an important victory and one came too late for too many.
By the summer of 2007 civil liberties, prisoner rights, human rights, and immigrant rights organizations had documented 64 known deaths in Immigration and Customs Enforcement (ICE) custody. Victoria Arellano was the 65th. A transgender woman with AIDS repeatedly and deliberately denied her medication, she died at the San Pedro detention center on July 20, 2007.[1]
We don’t know if Arellano ever tried to adjust her immigration status and was denied or discouraged because of her HIV status or her gender identity or both or neither. We do know that an inability to adjust immigration status increases the likelihood that people in our communities, including people living with HIV and AIDS (PLWHA), will end up in detention. We know, too, that the issue of HIV entry bars and the fallout from those policies have always been inextricably bound up with larger issues of immigrant justice, human rights, structural racism, the dehumanization of LGBTQ people, the delivery of health care, and the global fight against HIV and AIDS.
At this writing, 64 countries are known to impose restrictions on the entry, stay, and residence of HIV-positive foreigners. The cost of these policies has been staggering, even fatal—particularly for migrants, mobile workers, and undocumented immigrants. Progressive HIV & AIDS and LGBTQ movements worldwide have also paid the price for this redlining of people with HIV born outside their borders. These policies can have an immobilizing effect on many undocumented HIV-positive immigrants, justifiably afraid to come forward and be visible community leaders in the fight. It has kept people who should be working together to stem the epidemic and advance the rights and freedoms of LGBTQ people apart.
Finally, it has nurtured the age-old myth of the menacing, diseased alien: the foreigner-as-contaminant. Despicable in and of itself, this characterization fosters—not only in the public at large but also inside our own communities—a false sense of protection and of demarcation, suggesting that HIV is something “outside” and we can keep it that way. The United States, which had first an administrative and then a statutory ban, has, in fact, the highest HIV prevalence in the so-called developed world.
In 1987, the United States decreed HIV-positive noncitizens without legal permanent residence inadmissible except in extremely limited and rare circumstances. Travelers were barred from visiting or even transiting through the country. Non-green card holding people already in the country who tested positive were denied adjustment of their immigration status or any recognizable legal standing. We were six years into the epidemic and three years away from the elimination of the US entry ban on homosexuality. There was nothing coincidental about this overlap. The first years of the epidemic were marked by vicious rhetoric about the “4 H’s:” homosexuals, Haitians, heroin users, and hemophiliacs. Each early policy response to HIV and AIDS, including immigration policy, was informed by animosity toward the first three of these groups. We are still living with the fallout. It is widely acknowledged that this legacy would have been completely different if the first group to get hit with HIV had been, say, the second sons of Forbes 500 executives. With some important exceptions (few and far between), immigration law (and not only US immigration law) has had at its core a concern with who would be included in the nation and who would be denied inclusion. If flawed “public health” claims could be evoked to bolster exclusionist arguments, so much the better.
For six years, the HIV entry bar remained an administrative policy under the purview of the Department of Health and Human Services (HHS). Then, in 1993, it took its place in a long line of legislative enactments that together testify to the elasticity of inadmissibility. In the interim, over 200 LGBTQ, HIV/AIDS, immigrant service, and health-related organizations came forward to oppose the policy, as did two secretaries of the HHS. Advocates, particularly those in the Haitian community, took up critical work in the wake of the forced testing and detention of over 200 refugees at the US base at Guantanamo Bay. Activists succeeded in keeping the International AIDS Conference out of the United States so long as the entry restrictions persisted.[2] Finally, two administrations, one Republican and one Democrat, tried and failed to remove the ban. The latter attempt, by then President Bill Clinton, triggered a belligerent backlash from Congress which proceeded to enshrine the entry bar in the Immigration and Nationality Act (INA). The move was championed by Jesse Helms, who decried the administration’s concessions to “the AIDS lobby and to the homosexual rights movement which feeds it … an arrogant and repugnant political group.”[3]
The bar remained there, in the INA, until 2008, with the INA poised as a defender of “public health” and guardian of the public purse. In reality of course, the policy failed even by its own logic. It jeopardized individual and public health. Travelers were dissuaded from bringing their antiretrovirals (ARVs) through customs for fear of being turned around at the ports of entry and so risked interruption of their treatment regimens and subsequent development of drug resistance. HIV-positive immigrants were, in effect, driven underground, ineligible for public medical benefits, and often reluctant to put their immigration status in limbo by seeking out any type of care until they ended up in the emergency room with full blown AIDS—a much costlier and more hazardous health care alternative. These realities exposed the fallacies of the public health/public purse subterfuge, and so the HIV bar’s origins and resilience are best explained by two essential political truths: Nobody ever lost an election by defaming or disfranchising immigrants, and anti-immigrant sentiment has always found a responsive chord in a majority that harbors—indeed celebrates—acrimony toward the international community and a practiced enmity toward racial and sexual outsiders (so much so that said majority will tolerate grievous violations of their human rights).
What follows is a brief description of how advocates and activists addressed both fact and fiction to bring the issue of HIV entry bars back to the surface and how, after years of neglect and resignation, succeeded in getting the US bar removed from statute and administrative policy. Fundamentally, it came down to the deployment of the right language at the right time, recognition of the interdependency of constituencies, and a willingness to pursue a human-rights-based approach even as we addressed economic and public health claims.
Words Matter
For a long time, conversations on US restrictions on HIV-positive travelers and immigrants were kept separate though they were from the outset inseparable; both groups were proscribed in a single sentence of the INA which stated that, “any alien — (i) who is determined […] to have a communicable disease of public health significance, which shall include infection with the etiologic agent for acquired immune deficiency syndrome,” was ineligible to receive a visa or to be admitted to the United States. Often, the immigration bar never even entered into the discussion. In fact, this policy and similar policies elsewhere in the world continue to be referred to by many as “travel bans.” This verbiage has long erased the policies’ most vulnerable victims (immigrants and other mobile populations). The “travel ban” concept has also trivialized the significant dangers the bans have posed to even short-term travelers. For example, those few permitted to visit the United States for 30 days or less on special waivers had their passports branded with a waiver stamp: a mark of inadmissibility thereafter visible at every port of entry in the world. Even for travelers, this was no mere matter of vacation plans thrown off course, but an invasion of privacy that placed the bearers in serious jeopardy.
It became critical to dislodge the old terminology and challenge old formulations about the policy; to talk not of travel bans, but of entry bars involving barriers at two points of entry. The first, obvious and literal: people with HIV were prohibited from entering the United States. The second, encountered on this side of the US border: entry into the workforce and the healthcare system were also barred to those unable to adjust their immigration status, as was their full participation in civic life and their access to housing and welfare benefits. The image that often came to mind in these discussions was that of getting caught in a vestibule between two doors. This much more complex and precise construction of the magnitude of the entry bar opened up more opportunities for coalition work.
Unity
The truth is, after some important efforts in the early 1990s, we dropped the ball. Immigrant rights organizations and HIV and AIDS service providers continued to deliver vital advocacy for immigrants and travelers with HIV (including winning some groundbreaking asylum cases), but by and large there was no organized, sustained challenge to the policy itself. National LGBTQ groups with the capacity and resources to take on federal issues elected to concentrate resources first on gays in the military and then on gay marriage.
Then, in 2005, in the midst of a series of draconian immigration proposals from Congress, a daily onslaught of anti-immigrant vitriol from the news media, and a national response by immigrant justice organizations, advocates saw an opening. It’s true, these were (and remain) hostile times for immigrants and perhaps not the most auspicious moment to be asking legislators for the kind of redress we sought. But bad publicity is better than no publicity at all and visibility brought opportunity. One group that seized the moment was the Coalition to Lift the Bar, an alliance of HIV and AIDS, immigrant, human rights, and LGBTQ service and advocacy organizations, and immigrants with HIV, formed in the summer of 2006.
The first order of business was to set down the coalition’s points of unity, “unity” being the operative word. The goal would be to overturn the policy in its entirety, despite calls from other quarters to tackle what was perceived by some as an easier lift: the ban on travelers. Even if some measure of “success” could be achieved this way, it likely would have left immigrants with HIV twisting in the wind for years, if not decades, to come. Besides, if there’s one lesson to be learned from the Christian right, it’s to ask for what you want (consistently and without compromise), not just what you think you can get.
We also had to contend with what may be called “gay marriage creep,” whereby all issues of inequity are seen to be resolvable by basing rights on relationship status. A few took the position that the bar would not be struck in its entirety anytime soon and called for focusing efforts on expanded waiver options for HIV-positive, non-green card holders whose lovers were US citizens. One member organization did pursue this, but the coalition as a whole believed it to be an ethically and strategically bankrupt course of action. As a group, Lift the Bar took the position that rights should accrue not though relationship status, but by way of a recognition of a common, universal, and undeniable humanity. Further, we questioned the soundness of pinning rights on something as tenuous as a relationship, especially when members of the coalition who were doing frontline work with immigrants with HIV reported that roughly 80 percent—gay or straight—were single. No lover. No spouse. No partner. No boyfriend. No girlfriend. Single.
It was also imperative for us to grasp the sweep of the issue at hand and the particular moment in history. This meant that the coalition understood itself to be part of a larger immigrant justice movement opposing the criminalization of immigration and that it recognized any assault on immigrants (regardless of status), on people of color, on HIV-positive people, on queer people, or on low-wage workers as an attack on all vulnerable communities. It also meant characterizing the HIV entry bar not only as a threat to public health, but as a violation of human rights. These particular points of unity defined the ways we talked about the bar to our communities, to allies, and to organizations and individuals inside and outside the coalition who were doing work on the issue. What we found was that contextualizing the entry bar in this way and linking it to issues such as labor, migration, and human rights didn’t place it beyond any measure of manageability, it made the task at hand viable. It expanded our reach and our resources, opened new possibilities for domestic and international collective work, and enabled us to bring human rights principles to the belly of the beast: Washington DC.
Make the Human Rights Case (But Hit ‘em With the Numbers)
Outside of US human rights organizations, activists and advocates in this country have a tendency to relegate human rights-based arguments to international issues. Domestically, we limit ourselves to speaking of civil rights, racial and economic justice, social equality—mammoth enough endeavors without trying to get lawmakers to abide by international covenants or to even acknowledge human rights violations inside the nation’s borders. To be sure, the prospects seemed dim. To the extent that legislators or the media were even aware of the HIV bar, its necessity and the soundness of its rationales were taken as axiomatic. It was clear that the rights issues would not get any kind of hearing unless the economic and public health justifications for maintaining the policy were dismantled.
On the whole we did not privilege fiscal arguments—not because the numbers were not on our side, but because of a belief that rights must trump economics. We knew we would not fold if, down the road, new numbers came that pointed to some financial advantage in maintaining the bar (though they never did) and we didn’t want anyone else to either. It was just too risky to make economics the foundation of our case. That said, we did need to counter the economic myths that bolstered the bar. We came armed with facts about immigrant underutilization of medical services and the costs of emergency-room care when an HIV-positive person, deprived of a green card, is shut out of jobs with medical benefits. We spoke of the loss of expertise, tax revenue, social security contributions, and about the expenditures associated with enforcing the regulations and caring for immigrants in detention (though very little care was in evidence).
We addressed public health concerns with warnings of the potentially deadly consequences of people going off their medication for fear that that customs and border patrol would find their ARVs: the risk of drug resistance and the development of drug resistant strains. We explained that the policy posed a deterrent to testing. We started a story collection campaign to enable immigrants with HIV to share their knowledge and analyses without having to disclose their identities, though some did take that risk and met face to face with reporters and Congressional staffers. And in all this, we continued to make the human rights claims to legislative staffers, to wire services, to community presses, and to our allies in the United States and abroad doing related advocacy work.
We kept our rights-based arguments simple, relying on three basic protections enumerated by the International Covenant on Civil and Political Rights, the Universal Declaration of Human Rights (UDHR), and the United Nations’ International Guidelines on HIV/AIDS and Human Rights (produced jointly by the office of the United Nations High Commissioner for Human Rights and UNAIDS), and citing the ways each of them was violated by the US HIV entry bar:
- Freedom of movement: detaining or restricting the movement of individuals solely because of their HIV status;
- Right to privacy: disclosing the results of mandatory HIV tests to various immigration officials and to green card applicants’ sponsors, family members, and others present at immigration interviews; announcing (via waiver stamps in their passports) travelers’ HIV status to border officials, family, traveling companions, employers, and miscellaneous authorities requiring state-issued identification;
- Freedom from discrimination: excluding individuals with HIV without legitimate justification (UN human rights guidelines state that restricting movement or choice of residence based on HIV status is discriminatory and unjustifiable on public health grounds).
We further argued that by intensifying stigma and preventing individuals from becoming legal permanent residents, the HIV entry bar was preventing HIV-positive people from exercising their rights to education, information, and the highest attainable standard of health. Here we referenced the UDHR and the International Covenant on Economic, Social, and Cultural Rights.
Human rights can be a dubious platform here in the US; not considered realpolitik. Yet, we remained committed to: 1) Affirming the need to repeal the ban for everyone; 2) Engaging economic and public health rationales as necessary; and 3) Articulating a rights-based approach. Our efforts and the efforts of advocates around the country resulted in the HIV Nondiscrimination in Travel and Immigration Act of 2007. Initiated by Representative Barbara Lee of California, the bill not only refused to privilege travelers over immigrants, it included a large excerpt from the UN’s International HIV/AIDS and Human Rights Guidelines. We provided Representative Lee’s office with this citation, “There is no public health rationale for restricting liberty of movement or choice of residence on the grounds of HIV status […] Therefore, any restrictions on these rights based on suspected or real HIV status alone, including HIV screening of international travelers, are discriminatory and cannot be justified by public health concerns.”[4] These guidelines also state the following: “Where States prohibit people living with HIV from longer term residency due to concerns about economic costs, States should not single out HIV/AIDS, as opposed to comparable conditions, for such treatment and should establish that such costs would indeed be incurred in the case of the individual alien seeking residency. In considering entry applications, humanitarian concerns […] should outweigh economic considerations.”[5]
Several months later, Senators Kerry and Smith introduced the exact same bill on the Senate side. In the space of a year, a human-rights-based (or at least a human-rights-inclusive) approach that targeted the entire ban went from being dismissed as pure fantasy to inclusion in a House and a Senate bill.
Ultimately, this bill never came to the floor. It was superseded by another piece of legislation. The President’s Emergency Plan for AIDS Relief (PEPFAR) was coming up for reauthorization in 2008. With support from Lee, Kerry, and others in the House and the Senate, PEPFAR became the vehicle for eliminating the statutory entry bar. Legislators had heard from us on the issue for two years; we had equipped them with talking points, case studies, letters, and a sense of urgency. Now, both chambers voted to reauthorize a version of the bill that included Section 305, striking the HIV bar from the INA. There was debate on this provision, and on the larger bill itself (which Senator Dana Rohrabacher characterized as “benevolence gone wild”[6]), but the vote was not even close. PEPFAR was signed into law a few days later, almost a year to the day after Victoria Arellano’s death.
It was remarkable. The mere presence of Section 305 in PEPFAR, a bill which is concerned with the United States’ obligations to the international community, offered some recognition that, though regulation of immigration and entry is considered a sovereign right of nations, it is not solely a matter of domestic concern. Certainly, achieving any sort of victory in the current climate on an issue of immigrant justice—an issue with its roots in the ban against homosexuals and in a racially delimited immigration policy—is extraordinary and something we were told just two years earlier would never happen.
The legislation did not eliminate the HIV entry bar. What it did do was remove the bar from the INA and return authority for determining the inadmissibility of HIV-positive people to HHS where the ban had lived for the first six years of its life and where it did plenty of damage. In other words, the entry bar went from being statutory back to being administrative. In and of itself, it changed nothing for travelers and immigrants with HIV. That change came a year later in 2009 when HHS proposed a new rule that would remove HIV from the list of excludable health conditions and eliminate the mandatory HIV test from medical examinations administered to green card seekers.
That summer, advocates organized conference calls and telebriefings to break down the proposal for organizations and individuals and generate as many formal comments to HHS in support of the new rule as possible. The response was overwhelming. On October 30, 2009, the White House announced that the entry ban on PLWHA would be terminated. Three days later it became official with publication in the Federal Register. The new policy went into effect January 4, 2010.
Many of us experienced a new sensation the day the removal of the ban was announced: victory. We did not merely live to fight another day; we actually won. It took roughly three and a half years of concerted effort to overturn the entry bar; three and a half years of staying on point, of refusing division, of insistently asking for what we wanted and remaining unrelenting on the human rights issues. Not long in federal policy time. Too long and too late for too many left homeless, sick, and hungry; left without a country; and in some cases left for dead by the ban in the course of its 23-year history.
No Liberation without Free Movement
The repeal of the entry bar was an island of redress amid an increasingly terrifying landscape for immigrants. Detention and deportation numbers continue to climb. The bottom line is if a policy is dangerous for immigrants, it is dangerous for immigrants with HIV. Even for those employing the more specific lens of HIV-related advocacy, considerable work remains to be done inside and outside the United States. Despite the policy change, there are still reports of individuals being delayed at US ports of entry. HIV-positive travelers to the US who received a waiver under the previous policy will continue to be pulled aside by officials until and unless all references to their waivers are expunged. 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 HIV-positive immigrants; making it all but impossible for most to access housing or healthcare; limiting options for asylum and appeal; and effectively criminalizing non-green card holders (with or without HIV). Hospitals have taken it upon themselves to “repatriate” uninsured injured and ill immigrants, whether they are documented or not. We will have to beat back each of these assaults if we are serious about defending and expanding the rights of PLWHA, ensuring the full participation of all members of our communities in movement work, and supporting the free migration of all people. This includes sex workers (and former sex workers), people who use drugs, and people with criminal convictions: all of whom have felt the heavy impact of HIV and responded with critical analysis and activism, spearheading and joining campaigns against stigma and for access to care and treatment; and all of whom are currently barred from entering the US or adjusting their immigration status once here.
HIV-related restrictions on entry, stay, and residence remain in place all over the world. By foregrounding human rights arguments, we found a common language with intergovernmental agencies and with civil society activists and advocates in countries where the paradigm is considered both legitimate and essential (if not yet always enforceable). Formal and informal networks have been built; resources and expertise shared; joint projects launched; and internal and external pressures brought to bear on governments that obstruct the mobility of positive people.
As queers set out a progressive agenda, our project must be about the reshuffling and restructuring of power. This won’t happen unless we act to expand human rights, ensure the mobility of people and ideas (the kind of globalization the left can get behind), and expose the lunacy and treachery of borders. We cannot afford to be less ambitious than this.
There’s a reason queers were—and ought to remain—disproportionately involved in the work of tearing down entry bans. It’s not merely because of what HIV has meant to our community, but because we should be, by virtue of being outsiders (some more so than others), organic internationalists. This is our strength and nothing derived from assimilation even approximates it.
This writing would be incomplete without acknowledging the work of Vishal Trivedi, the Coalition to Lift the Bar, AIDS Action, the European AIDS Treatment Group, and the members of the International Task Team on HIV-related Travel Restrictions. Thanks to Coco Jervis and Gina Arias for years of invaluable conversation on and engagement with these issues, and along with Sean O’Toole for their invaluable feedback on this article.
Footnotes - Raised in the United States, undocumented, deported, Arellano fell into ICE’s hands while trying to cross back into the United States. She was housed in the men’s dormitory—a common and dangerous outrage for transgender women in custody, though her fellow detainees put themselves on the line trying to get her the treatment and care she needed (and paid a price for it). She died shackled to her bed. Her mother reported at the time that her body was wracked by pneumonia and meningitis. ICE (in)actions suggest the purposeful withholding of medical care as means of administering corporal punishment.
- The IAC, which has not been held on US soil in over 20 years because of the entry ban, is scheduled for Washington, DC, in 2012 in the wake of the policy’s removal. Other entry bans persist, however, including those on sex workers, people who use drugs, and those with criminal convictions. Despite efforts on the part of advocates and activists, as of this writing it remains unlikely that the International AIDS Society will bow to calls to move the IAC out of the United States.
- See 139 CONG. REC. S1697-02, S1721 (daily ed. Feb. 17, 1993). Cited in Daniel M. Bernstein’s paper, HIV/AIDS AND LAWFUL PERMANENT RESIDENCY:An Analysis of the HIV Bar, Waivers, and Prospects for Change, 1999.
- International Guidelines on HIV/AIDS and Human Rights, 2006 Consolidated Version, produced jointly by the Office of the United Nations High Commissioner for Human Rights and UNAIDS, page 93, paragraph 127.
- 5.International Guidelines on HIV/AIDS and Human Rights, 2006 Consolidated Version, produced jointly by the Office of the United Nations High Commissioner for Human Rights and UNAIDS, pages 93-94, paragraph 128.
- 6.Rohrbacher’s comments during the debate available on C-Span.