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.”1 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.”2
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”3), 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.
- 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. [↩]
- 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. [↩]
- Rohrbacher’s comments during the debate available on C-Span. [↩]
