Shades of Grey: Mandatory Testing for HIV - Sapna Desai & Neha Patel
All is not black and white… and we want to explore the shades of grey. Feminism is diverse and we don’t always agree totally with one another, though we may share a similar perspective. While we don’t want to silence other viewpoints, we want to focus on the finer distinctions between arguments used by people who are on the same side of the table.
The issue of mandatory HIV testing at the time of marriage has been coming up repeatedly in the last few years. Fortunately, so far, it has been mostly squelched. However, now it has resurfaced. Mandatory testing has huge implications in terms of human rights, the State’s accountability to provide services, and the effect that it will have on furthering stigma and discrimination, so on the one hand, there are people who veto it. On the other, there are those who believe it will help contain the spread of HIV and will ‘protect unsuspecting partners’. We are aware of the arguments used on both sides. These for and against arguments will continue, and it is not the purpose of this column to resolve them.
Within the debate on mandatory testing for HIV at the time of marriage, there are differences in the ways they are spoken about. Sapna Desai and Neha Patel give us their reasons why they oppose mandatory testing.
Here’s what we asked them:
Why do you believe that mandatory testing should not be implemented?
What are the issues to consider and the underlying assumptions being made?
As HIV/AIDS continues to spread, a heightened urgency and increased resources have resulted in a wide expansion of public health and social interventions. India has tried a range of approaches to face the complex challenge of HIV/AIDS over the past two decades. Today, the National AIDS Control Organization (NACO) policy focuses on widescale prevntion, with increased care, support and treatment services in the more affected states of the country. NACO has also established guidelines that no individual should be made to undergo mandatory HIV testing.
However, mandatory testing has been proposed at the State level yet again, this time in Goa, for couples as a requirement for marriage registration. Despite the public health intention of such a policy, the requisite public health perspective is sorely absent. I present an analysis of the population-based merits of a mandatory HIV testing policy with implications relevant not only in Goa, but also across India.
From a public health perspective, a mandatory testing policy for couples intends to: increase the number of individuals who know their HIV status in order to prevent further transmission; address the vulnerability – thus inability – of women in marriage to request partner testing; increase demand for care, support and treatment services.
The large proportion of individuals living with HIV/AIDS is not aware of their HIV status. Treatment to prolong and improve quality of life is available. Logically, it follows that increased access to HIV testing is critical. Through identifying individuals who are HIV-positive before they marry, mandatory testing policies could contribute to increasing awareness of HIV-status, and thus help to stem the epidemic in India.
Widespread stigma and discrimination, as well as limited testing infrastructure, are the most significant barriers to testing. Even where counseling and testing centers are effective, the very real fear of social ostracism prohibits many individuals from learning their HIV status. Another barrier to expanded counseling and testing has been the gendered power dynamics of marriage. In a society where at least 30% to 50% of women experience some form of abuse in marriage, use of testing and counseling services among married women has been, predictably, low. Mandatory testing for couples intends to work around, rather than foundationally overcome, these barriers by linking HIV testing to an institution central to Indian society, marriage.
More recently, NACO has promoted expansion of care and support services for people living with HIV/AIDS, and importantly, free ARV treatment in six high prevalence States. Demand and utilization of care and treatment services can only be created through knowledge of HIV-status. Thus it is again logical that HIV testing become more important and widespread. The availability of treatment has the potential, in the long term, to transform HIV/AIDS from a terminal illness to a chronic, manageable disease – but only if individuals know their HIV status. Given the barriers that have prevented widespread testing, a mandatory testing policy is one route to increasing numbers of people, at a specific lifetime point, marriage, who know their status. The need for scaled up HIV-testing is inarguable. Yet, as twenty-five years of interventions across the world have taught us, it is the means that determine the effectiveness and impact of the end.
The impact of a mandatory testing policy can be predicted by careful analysis of the flaws in the method itself, with a realistic analysis of the current public health environment. While mandatory testing for couples before marriage may increase the number of people who know their HIV status, the strategy is narrow and short-sighted. If a policy is truly aimed at protecting the public’s health, the logical corollary to forced testing is access to treatment. In the case of a positive test result, access to treatment along with mandatory testing is glaringly absent.
Forced testing without treatment will only further contribute to the true public health barrier to testing – stigma and discrimination. The reality is that women and men who test HIV positive are regularly discriminated against in the home, work environment and community. After a positive test result, what can a mandatory testing policy offer? It will increase stigma, which further prevents testing. Although couples seeking marriage registration may be forced to undergo an HIV test, wider society will have more reason to avoid one. Essentially, mandatory testing will prove counter-effective. Not only is it an easy way out of implementing proven effective HIV prevention strategies, it won’t work.
Effective strategies to prevent sexual transmission consist of awareness, behaviour change and condom use to promote safer sex, along with testing. While a mandatory test may circumvent women’s inability to request HIV testing right before marriage, what happens after marriage? A mandatory test, rather than one chosen by an individual equipped with adequate knowledge, does not promote safer sex, does not create a sustained demand, and does not help individuals understand why prevention is important after the marriage documents are signed. Testing is a critical component of prevention. But mandatory prevention for marriage is based on the false assumption that transmission can only occur on the wedding night. Unlike a smallpox vaccination, testing is not a one-shot preventive measure. Without the full range of prevention activities, mandatory testing before marriage will accomplish little. With the full range of HIV prevention activities, mandatory testing will not even be required.
Mandatory testing has virtually no favour globally, with little foreseeable impact on the prevention of HIV/AIDS in the Indian environment. Even in countries with epidemics that reach over 1/3 of the adult population such as Botswana, routine healthcare-based testing rather than mandatory testing has been introduced – and not without continued concern and debate. Until treatment is universally accessible and affordable, routine testing is, simply, a flawed public health strategy. The same is true for forced or mandatory testing as suggested in Goa, yet with even further human rights implications.
It has been well recognized that HIV/AIDS strategies are most effective when they integrate a human rights perspective, rather than falsely pit individual rights against public health. As NACO has long recognized, that although testing is important, it is informed awareness and access to testing, not policy forcing it, that will promote prevention, in the availability of treatment. Yet in today’s world, treatment reaches an unnecessarily small percentage of those who require it. Across India, only 35,000 of 770,000 people who require ARV treatment have been able to access it. Thus affordability and access to treatment, for States that seek to protect the public’s health, is the debate we should be having.
Sapna Desai is a public health consultant who works in the fields of reproductive health and HIV/AIDS. She is currently based in Ahmedabad with the Self-Employed Women’s Association.
A policy on mandatory HIV testing for couples who want to get married is ideologically dangerous in theory, argument, and assumption. In addition to the fact that the current public health infrastructure in India cannot handle the ramifications of this kind of policy, there are also arguments against the merits of this policy on the basis of rights, privacy and confidentiality, and stigma and discrimination. However, another critical argument against the policy that isn’t being debated as much is that it also illegitimizes sexuality, while making several assumptions that dismiss it altogether. I argue that the assumptions made by the mandatory testing policy will effect no real progress, and in fact, will setback any gains that have been made in HIV prevention and care.
First, having the State link and implement protective public health measures for HIV prevention with marriage is like saying: ‘As part of your rights to health as a citizen, we will give you protection under the law, look out for your health, and make sure you are armed with all the correct information – but you have to be in a married, monogamous relationship with someone from the opposite sex in order to get it.’ In principle, this policy implies that sexuality has legitimacy only within marriage – and the State can facilitate and sanction information, access, and legal recourse for public health measures within it. Subsequently, people of other genders and sexualities are rendered invisible; left out of the law’s purview and given the status of second-class citizens because of who they are and the choices they make.
Moreover, the assumption that sex can only happen between a man and a woman, and that too only within marriage, and further, that after marriage, they will have no other partners, only serves to deny critical information and access to HIV prevention and care to a large cross-section of people in society, who, under this policy, apparently have no claims to the right to health. That people’s expression and regulation of their individual sexuality can be influenced by mandatory testing once they decide (or someone decides for them) to get married is not only unrealistic, but also negates the choices people make if these choices fall outside of the State-created norm for sexuality.
Second, the assumption that the need for an HIV prevention intervention should begin only after someone decides to get married is predicated on false security and fails at the very outset. Imagine this scenario – a couple who registers to get married gets an HIV test and both test negative. Does this mean that the couple can now breathe a sigh of relief? No. HIV cannot be detected during the window period. So, consider this – one partner had unprotected sex with someone else one month before registering to get married, and may not reveal this. If the person is indeed positive, the mandatory test will not pick this up during the window period. Also, this policy falsely assumes that by compulsorily testing people and providing them with information about HIV, they will begin to express and negotiate their sexuality only within a monogamous relationship.
Effective public health policies need to take into account the diversity of contexts in which sexual behaviour occurs. The message that this policy will send is dangerous: ‘Get married, so that HIV will eventually weed itself out.’ The State narrowly assumes that people do not engage in sexual behaviour before marriage. It’s as if the State is regulating when you have sex; with the implication that if you do it when they think it is right, you will be protected from HIV – on your marriage night, after you and your partner have tested negative. This is illogical, if not outright dangerous thinking.
Third, the policy is based on the predication that it will provide more choices to women who are disproportionately affected by HIV/AIDS. However, this policy will actually disempower women and further increase the gender disparity in HIV. The assumption that all women are victims in marriage, waiting to be infected by men – further falsely emphasises that it is who you are, not what you do that puts you at risk. There is an inherent belief and understanding that it is men’s sexuality that is out of control – that women just don’t have the inclination, space, or opportunity to do anything that might put them at risk. If we promote unnecessarily protectionist policies as solutions for women, we inevitably send messages that women are not empowered as agents of change. We also assume that men are the only ones who can pass HIV to women. This particular assumption implies that in order to control the epidemic, we must ‘save’ women and secure their health by protecting and promoting their marriages because they are safe there. The men who marry them will be responsible for their continued protection against HIV by remaining ‘faithful’. These assumptions are not cognizant of the real lives of real people. Public health measures should provide for and not limit people’s ability to negotiate and choose what contributes to their wellbeing.
Defining marriage as the only ‘safe space’ to prevent HIV/AIDS sends a misleading social message. Marriage isn’t a cure, a preventive strategy, or a lifestyle that should be placed at a higher premium to maintain better health. Giving the State continued power to define what it considers ‘normal’ sexual behaviour for individuals is another way for the government to equate sexual morality with health, which again, will do nothing to prevent HIV/AIDS – in fact, it will just drive the epidemic further.
And, if this policy is implemented and someone does test positive, then what? The lack of an adequate public healthcare infrastructure in India severely limits the capacity to handle the consequences of this policy. What kinds of support systems, treatment care and access, and options will people have? What guidelines and protocols exist to provide people with the tools they need to negotiate their wellbeing in this context? The State’s key message and assumption that will prevail here is: ‘Don’t have sex before you get married – it will put you at-risk for HIV’, which is an artificial quick fix to an issue that requires us to acknowledge the diversity that exists in people’s behaviours, identities and contexts, not to dismiss it.
The problem will still remain of how to reach people that aren’t included under the policy. How can other solutions reflect and account for the diversity that actually exists when it comes to sexuality? Mandatory testing only serves to further reinforce the idea that HIV/AIDS is the problem of certain groups – and stigma will continue on the basis of who you are – unless, of course, you are married.
Neha Patel is the Research and Advocacy Coordinator at The South and Southeast Asia Resource Centre on Sexuality in New Delhi, India and works on issues of sexuality and rights in the region.