HIV drugs plus gender inequality equals non-adherence

Initiatives to increase access to essential medicines in developing countries is, of course, a good thing. It is the building of a lifeline. However, in settings challenged by the legacy of colonialism, hampered by unfair trade policies, and marked by poverty and oppression, it is no small feat to get the right drugs to patients and increase the number of patients served. It is a continuous struggle against the obstacles posed by transport and logistics, bureaucratic administrations, weak health care infrastructure, political inertia and the machinations of global pharmaceutical companies. And it is well-known that once the patients finally get the drugs, the struggle is not at all over. There are still problems of 'adherence', which at first sight may look like mere psychological unwillingness or carelessness in regard to compliance with a drug regime. On closer inspection, 'adherence problems' are really problems in integrating the taking of medication within the life-world of the patient. For one or another reason, it does not fit.

I recently saw a striking news item reminding me of the social complexity that stands behind 'non-adherence.' Apparently a significant number of men in Uganda, living with HIV but not open about their status, are taking medications from their HIV-positive female partners. When antiretroviral treatment was first being rolled out in Africa, I recall anecdotal reports of patients sharing their medicines with those without access to treatment. There the motive behind sharing was understandable and admirable -- a matter of human solidarity -- though the practice was dangerous as it meant improper dosing for all involved. The Ugandan case is different: the men probably would have access to treatment if they declared their status and appeared at clinics (apparently this is not just a Ugandan phenomenon). And this is stealing, not sharing, apparently facilitated in some cases by gender-based violence. So this is a new way of being 'non-compliant': having an aggressive partner unable to come to terms with his own HIV diagnosis.  

Ethical argumentation and homosexuality in Africa

I am part of the teaching faculty in a NIH-funded bioethics capacity building program in Cape Town, South Africa, named Advancing Research Ethics in Southern Africa (ARESA). The program targets mid-career health professionals who are liable to contribute to the bioethics culture in their home institutional environment: when serving on their research ethics committees, writing articles, teaching classes, and so on. Part of the bioethics training is in philosophy: after all, bioethics is a form of applied ethics, and ethics is a central branch of philosophy. This means that critical thinking and argumentation are core skills for those in the field: when moral claims are made, bioethicists are supposed to examine and evaluate the ethical reasons that support them.

In principle, the idea of philosophical argumentation is not difficult to convey. But in my experience, sympathy towards the practice depends what specific claim is being examined. Predictably, the holier the cow, the greater the reluctance. Examining the moral claims "Homosexuality is immoral" and/or "Homosexuality should be illegal", in the African context, seems to be even harder than exploring the reasons against abortion. This is unfortunate, given the topicality of the moral and legal status of homosexuality, now that Ugandan President Museveni has recently signed anti-gay legislation. It is also unfortunate given the painfully low quality of the debate. It is just supposed to be obvious why homosexuality is wrong, dangerous, to be outlawed. If you ask for reasons, the responses are not promising.

Case in point. Take this editorial in The Observer, a prominent newspaper in Kampala, Uganda. Entitled "Uganda must resist resist West on anti-gay legislation." The 'must' indicates that a normative claim is being made, i.e. that there are good reasons for laws against homosexuality in Uganda. So what good reasons are offered? Let me sum them up:

• A book written back in 1989 set out a six-point plan to promote the rights of same-sex persons. According to conservative groups in the USA, the book initiated an agenda in which anti-gay legislation is packaged as an affront in terms of human rights, justice, and freedom.
• Gay groups use scientific research to prove that homosexuality is innate, and some gay people claim to know they were gay at the age of five, which is ridiculous. 
• Gay groups claim that all dissent against their views is homophobia. 
• All religious denominations in Uganda say that homosexuality is abominable, detestable, repugnant and offends God. 

When potential harm is connected to a moral claim, then the arguments in support of that claim should be very robust. Given that anti-gay legislation means prison for sexual orientation -- not to mention encouragement of anti-gay 'street justice' when names of gay persons are published -- the standards for rational justification should be high. Suggestions of that the global rise of gay rights is due to a 'roadmap' in an obscure book does not do it; if scientific research on homosexuality is dubious, that should be argued for, not insinuated; the weaknesses of (selectively) using holy scripture to support moral claims are well-known. This is just one editorial (by a lecturer at a higher education institution in Uganda), but there is a pattern. Backed against a wall, those in Africa in favor of outlawing homosexuality are asked to give reasons, and then out comes everything and the kitchen sink. Except good arguments. And when you are violently opposed to homosexuality, without being able to give good reasons, then homophobia might just be the best explanation of what you are doing. When will the Ugandan bioethicists rise up and start a meaningful debate? 

The ethics of disseminating research results

Article 33 of the Declaration of Helsinki (2008) reads:

At the conclusion of the study, patients entered into the study are entitled to be informed about the outcome of the study and to share any benefits that result from it, for example, access to interventions identified as beneficial in the study or to other appropriate care or benefits.

As usual with ethics guidelines, they do not come with practical guidance. So how, in concrete terms, do you best carry out this ethical requirement? What if fulfilling this requirement actually involves risks to participants? And do you have to only disseminate at the conclusion of the study?

There is an interesting recent article in PLoS Medicine on this topic. In part, researchers were provoked to disseminate results back to participants in a longitudinal observational HIV treatment study, when a participant said: "You have been asking me questions and taking my blood for years, but I do not know anything about what you have found." Acting on this remark while the research is still ongoing seems to have taken the research team -- and the participant community -- on a challenging but very positive journey. Dissemination of research means translating them in two ways: from the dominant scientific language (English) into the local language, and translating technical terms into more accessible ones to those without extensive formal education. Bringing HIV positive persons in a research study together at the same event poses potential issues of stigma and loss of confidentiality, and subsequent involvement of ethics committees. And the format of dissemination has to be culturally appropriate: powerpoint slides and handouts are not going to do it. In the dissemination event described in the article, everything seems to have gone as it should among researchers and participants, resulting in a greater understanding of and respect for one another. This is an embodiment of what the 'ethical conduct of research' means far beyond the usual fixation on the contents of consent forms.

Ugandan government takes dead aim at HIV positive gays

Many Africans seem to believe that men having sex with men, or women having sex with women, is unAfrican. It is as if such sexual behavior never took place on the continent during its very long history, and if it has appeared recently, this is due to external, non-African influences -- as if it were a new fashion craze helicoptered in from San Francisco. In this way, gays in Africa are doubly marginalized: they not only deviate from heterosexual norms, they aren't 'real Africans.' And being stripped of cultural identity is often a prelude to (and justification for) exclusion, humiliation or physical violence. Not everyone in Africa sees things this way, of course, but it is a real and strong tendency.

The tendency is strongly manifest in a provisional bill ("The Anti-Homosexuality Bill") currently being proposed and discussed by the Ugandan government. There already are anti-homosexual laws in Uganda, harking back to colonial times, but members of the government are seeking to beef them up, and how. Among its provisions, single gay sex acts could be punished by life sentences; repeated gay sex acts could lead to the death penalty; gays who test HIV positive could be executed; members of organizations who engage in the 'promotion of homosexuality' (i.e. gay rights groups) would be outlawed; even an attempt to commit a homosexual act would be considered a felony and a conviction would lead to a seven year prison sentence.

The proposal bill is worth reading in the original. It starts off with a number of unargued assertions: that homosexuality is not innate (hence mutable, or 'curable'), and that the bill aims to protect the traditional family values of Ugandans, apparently under serious threat by sexual rights activists hell bent on imposing their agenda of promiscuity and adoption of children by gay couples. One of the last provisions in the proposed bill is aimed to deflect any and all criticism from a human rights point of view: "Any International legal instrument whose provisions are contradictory to the spirit and provisions enshrined in this Act, are null and void to the extent of their inconsistency." A lot like saying: this is the way we intend to treat our gay Ugandan citizens, and outsiders, if they don't like it, can go to straight to hell. Highly reminiscent of Zimbabwean president Robert Mugabe's old trick: use a lot of nationalist and anti-colonial rhetoric against outsiders to justify abuses on the enemies within.

Ugandan government officials generally don't mind listening to right-wing religious groups from the United States (or taking their money) as long as the latter says what the former wants to hear or already believes in. But US anti-gay groups are pulling back (a bit) from this one publicly, even if they are happy with its spirit of the proposed laws. The Ugandans, it seems, are on their own. Or maybe not. Given the extent of gay hatred on the continent, the bill if approved could function as a template for similar legislation in neighboring countries. So it is important to see how this situation evolves.

It is also important from the perspective of HIV prevention. Plenty of men have sex with men in Africa, if you bother to look closely enough, and these men have a disproportionally higher incidence of HIV. Reaching this population with HIV prevention messages and strategies is already difficult enough, without laws that treat them as sub-human.