It has been a long time in coming and there have been many false dawns, but it really does look as if the ban on people with HIV entering the United States is coming to an end, says Gus Cairns

Barring an unexpected challenge from the US Congress, the removal of HIV from the list of “communicable diseases of public health significance” should happen by the end of this year, and this should mean that people with HIV will be free not only to travel to, but apply to work and settle in, the USA.

The Office of Management and Budget (OMB) for the US Department of Health and Human Services (DHHS) issued a “Notice of Proposed Rulemaking” on 30 June containing a set of proposals to remove HIV from the list of diseases and delete references to it in public health and immigration regulations.

The initial regulations banning people with HIV were enacted by the DHHS in 1987. They were in the form of guidance to the US Immigration and Naturalisation Service (INS) that HIV should be among the list of diseases of public health significance, but the INS’s application of the law was inconsistent as there was no consensus that HIV fell into this category.

In 1993, however, a measure called the Nichols Amendment, sponsored by the notoriously anti-gay Senator Jesse Helms, specifically required HIV to be classed as a disease of public health significance.

The exact wording of the law was that “Any alien . . . 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 and ineligible to be admitted to the United States.

President Bill Clinton opposed the measure but – as it was packaged alongside a number of other public health measures he supported – felt he had to sign it into law or the whole bill would have fallen.

The law did not mean that there was no chance of people with HIV entering the USA. But it did mean that they had to plead to be a special case. Entry to the USA requires a visa in most cases. However citizens of 35 counties, including the UK, are entitled to short-term entry of up to 90 days under the so-called Visa Waiver Program. Until recently this has involved filling in a green form, prior to travel or on the aircraft, which requires the applicant to declare, among other things, that they do not have a communicable disease.

HIV-positive people were officially denied this route. Instead they had to apply for a proper entry visa, be denied it and then, in a tortuous legal process, be issued with a different kind of visa waiver. This would involve a frequently lengthy and in-person interview at the US embassy, and a stamp in their passport which stated “Denied entry to the USA”, accompanied by a waiver saying that as a special concession they would be let in after all.

The impact of this stamp was often worse when travellers subsequently sought entry to other countries as it flagged up that they had had a problem with the US authorities, but not what the problem was.

This meant that HIV-positive people faced a dilemma when deciding whether to travel to the USA. They could simply refuse to go. They could lie on their visa waiver form and risk denial of entry or deportation if their HIV medication was found in their possession. Or they could risk a stamp that labelled them a travel pariah.

In 2003, a study from the Lawson Unit HIV Outpatients' Clinic in Brighton¹ looked at whether HIV-positive patients travelling to the USA were able to obtain a visa waiver and/or medical insurance, and to establish how they managed their HIV medications when travelling.

The most striking finding was that fear about US entry restrictions affected the way people took their HIV drugs. Of the 83 respondents on antiretrovirals who travelled to the USA, 10 (12.5%) stopped their drugs for the duration of their stay. Five chose to take treatment interruptions prior to leaving for the States, and five tried to mail their drugs to the USA in advance but had problems doing so, either finding they never arrived or were stopped at customs.

Of the three people who had short- or long-term problems due to their treatment interruption, one subsequently developed NNRTI drug resistance (Y188L). "This was a highly drug-experienced patient who has subsequently run out of options now that he has also developed resistance to T-20," noted Dr Duncan Churchill, co-author of the study, at the time. The other two developed intermittent fevers, joint pain, headaches and diarrhoea, symptomatic of a viral load rebound, while in the USA.

The first crack in the US position came in February 2006, when the US government issued a blanket waiver allowing HIV-positive people to enter the USA to attend the Gay Games in Chicago. Importantly, the visa was issued on a special form instead of being placed permanently in passports.

In July 2008, George Bush signed into law a provision that removed the Nichols Amendment. However it did not remove the ban, but simply returned the power to refuse entry from Congress to the DHHS which was then asked to “initiate a rulemaking that would propose a categorical waiver for HIV-positive people seeking to enter the United States on short-term visas”.

The new notice sets in motion a far more profound change than this. If enacted in full, it will not simply remove the categorical ban on people with HIV entering the USA, it will also enable people with HIV to apply for long-term residency and work visas. In its proposed rulemaking, the DHHS states that:

“While HIV infection is a serious health condition, it does not represent a communicable disease that is a significant threat for introduction, transmission, and spread to the U.S. population through casual contact.”

If this declaration remains unaltered, it means that not only will the USA be removed from the ten countries – out of the world’s 200 – that automatically ban people with HIV on entry, and another ten or so who deport people instantly if they are discovered to have HIV, but also from the larger list of 50 or so countries that prevent people with HIV from seeking residency or work status. It would join the 99 countries that see HIV as irrelevant to a person’s right to enter.

Barring unlikely opposition from Congress, the lifting of the ban, it is hoped, will take place by the end of 2009. There is a period for public comment till mid-August, after which DHHS may make adjustments to its proposal and send it back to the OMB for budgetary approval. After this there will be another review period which could either be 30 or 90 days. This means that the earliest it is likely to come into law would be mid-autumn.

Removing the ban would enable the International AIDS Society to start planning for the 19th International AIDS Conference in 2012 to take place in Washington, DC, as it said it would if the ban were to be lifted. The last International AIDS Conference to be held in the USA took place in San Francisco in 1990.

Lifting the ban will focus attention on the other countries that deny entry to people with HIV or deport them. Some, like Saudi Arabia and Sudan, are not known for their enlightened policies. But the list also includes some important world destinations such as Singapore and South Korea.

Two former banners, China and Russia, are in the process of changing their own regulations. China is currently conducting a consultation on lifting the ban. Russia, meanwhile, no longer denies entry but still requires an HIV test and an almost certain ban for people wishing to stay more than 90 days. Fifty countries including Canada, Australia, Israel, Poland and Malaysia still ban long-stayers.

It will also have important personal consequences for a lot of people wishing to travel or live in the USA. One is German national Heidemarie Kremer who moved to the USA to be with her HIV-negative husband.

She says: “I am currently in deportation procedures due to HIV. Fortunately, I was able to postpone the deportation hearing I had today. I guess this will now save my children and me from deportation.”