I. A Scientific Perspective
By Jon Fuller
Nearly 20,000 participants converged on Bangkok in mid-July for the 15th International AIDS Conference. This biennial event has evolved from a purely scientific gathering into a forum for stakeholders of all stripes, ranging from heads of state and ministers of health to individuals who are living with the virus and those who care for them. Against the backdrop of an estimated 40 million people currently living with H.I.V., with an additional three million deaths and five million new infections annually, the conference’s theme of “Access for All” drew enormous attention to worldwide efforts now underway to bring H.I.V. prevention and treatment to all who need them. These include the World Health Organization’s “3 by 5” initiative (treat three million people by 2005), President George W. Bush’s program, called the President’s Emergency Plan for AIDS Relief (known as Pepfar), to treat five million persons in five years, and the Global Fund for AIDS, Tuberculosis and Malaria. At the present time, approximately $5 billion is being invested each year on H.I.V. prevention and treatment, but Unaids estimates that $12 billion will be needed annually by 2005, and $20 billion by 2007.
The director of Unaids, Peter Piot, noted that for the first time he felt that “there is a real chance we will get ahead of the epidemic.” At the same time, he highlighted the fact that AIDS programs cannot be narrowly conceived along a medical model, which can deliver H.I.V. treatments only in the short term. They must instead be focused on developing the capacity of community programs to sustain such resources in the context of the primary health care system for the next 20, 30 or 40 years. Additionally, prevention must focus not only on providing condoms and clean needles, but must also be directed toward long-range community development that can provide education (especially for young women) and address the ever-critical issue of gender inequality. It is clear that it will never be enough simply to provide anti-H.I.V. drugs, but that a holistic approach attending to nutrition, hygiene, clean water and education are the real tools of H.I.V. prevention. As one person living with H.I.V. put it, “What good does it do me to have H.I.V. drugs, when I don’t have enough to eat?”
Vaccine development continues to take center stage as the hoped-for means both of preventing new infections and of stimulating the immune response against H.I.V. for persons already infected. But the conference was reminded that all previous approaches to vaccine development have failed in trying to counter the AIDS virus, and that developing a vaccine against this pathogen remains one of the most daunting challenges facing biomedicine today. While successes have been few to date, the good news is that enormous investments of financial and intellectual resources are finally being applied to find this all-important weapon in the fight against AIDS.
The development of vaginal microbicides (agents to block infectious diseases) for preventing the transmission of H.I.V. and other sexually transmitted infections is another urgent priority. Such agents could finally give women a role in protecting themselves from H.I.V-infected men (which they could not do with the male-controlled condom) and might also provide a possibility for conception while blocking transmission of infections.
Significant achievements have been made in reducing the 500,000 to 800,000 cases of H.I.V. transmission from infected mothers to infants that occur annually. A single dose of nevirapine to a mother in labor, and to her infant within 72 hours after birth, can significantly decrease transmission rates. But exposure to even a single dose of nevirapine can also lead to drug resistance, which compromises the mother’s subsequent benefit from three drug regimes that include nevirapine to control her own H.I.V. infection. Very preliminary but promising results from South Africa suggested that the addition of two other drugs for four to seven days after delivery might reduce the risk of such resistance.
Some scientists and clinicians believe that the inclusion of all parties in the Bangkok Conference has diluted a purely scientific/medical agenda. From another perspective, however, this event can be viewed as “a work of the people”—a “liturgy” on behalf of the world community that provided an unprecedented forum for affected populations and those in leadership to plan strategies, call one another to responsibility and increase the number of persons who have “a place at the table.” (Sonia Gandhi’s address to the conference was evidence that more and more world leaders now understand what is at stake.) What is subsequently made available on that table, ranging from vaccines and drugs to nutrition and clean water, remains the all-important and ever-challenging central question.
II. An Ethical Perspective
By James F. Keenan
At Bangkok, ethical issues abounded. Should poorer nations adhere to the patenting claims of pharmaceutical companies producing H.I.V. drugs? Should children become participants in treatment and vaccination trials? Should H.I.V.-positive pregnant women take drugs that decrease the possibility of transmitting H.I.V. to their children, but that could also make the mothers themselves resistant to such treatment? Four fundamentally related issues were raised at the AIDS conference: access for all (the conference’s theme), the ethics of truth-telling and promise-keeping, human rights and ABC (Abstain, Be faithful, use Condoms) and H.I.V./AIDS prevention.
From the first plenary session to the last, I heard time and again, “Access to H.I.V. treatment is a human right.” I never heard, however, the complementary arguments that could morally compel the international community in general, and the industrialized world in particular, to make that access a reality. No ethical analysis making that case was offered. Instead we heard language about “donor” nations, whose “generosity” was occasionally recognized.
Here the resources of religious traditions can provide assistance. In the revealed texts of Islam, Judaism and Christianity, mercy is not an option; it is precisely what God requires. Roman Catholicism, for instance, has developed merciful concepts like distributive justice, the common good and the option for the poor. It is to be hoped that as the claims for Access for All continue, religious ethicists will come to the fore with arguments in support of activists’ claims.
A second ethical issue was more developed: the ethics of truth-telling and promise-keeping. Without the conceptual argument for a moral responsibility to respond to the AIDS crisis, AIDS leaders and activists at least decided to hold leaders and donor nations accountable for their promises, pledges and commitments. This instrument of accountability appeared in two ways. First, AIDS activists—particularly a contingent of about 100 members of ACT-UP PARIS—repeatedly challenged both visiting dignitaries and pharmaceutical presidents with the chant, “You lied to us.” Instead of simply calling these persons liars for not realizing their pledges, however, the activists insisted on more interpersonal, you/us language. This brought to the fore their moral claim: if we can’t oblige you to make access available, we can at least keep you faithful to your word. Their chant was frequently picked up by political leaders. Graça Machel, the former first lady of Mozambique and now Mrs. Nelson Mandela, reiterated often: “Let Bangkok mark the end of promises made and promises broken.”
The ethics of truth-telling emerged elsewhere as well. Studies of men who engaged in risky sexual activity with men and then later with their unknowing female partners were reported from Africa, India and the United States. Two other panel presentations broke a long-held taboo by disclosing male homosexual practices in Africa. This led, in turn, to the question of whether an H.I.V.-infected person had a moral responsibility to inform her/his sexual partner. But truth-telling also challenged faith-based organizations to acknowledge the effectiveness of condoms in H.I.V. prevention. It prompted enormous debate when the question, “What do faith-based organizations need to do in the face of H.I.V./AIDS,” was posed to a Kenyan theologian, Musimbi Kanyoro, who answered, “Break the silence on sex!”
The third issue was human rights. The late Jonathan Mann, one of the early H.I.V./AIDS pioneers in public health, in a Hastings Center Report in 1997, proposed human rights as a key to effective prevention strategies. His argument was that public health needs a language and a conceptual framework of analysis to ascertain the goods needed in the pursuit of specific rights. His prophetic call was clearly heard at Bangkok but was received in two very different ways. Many from the industrialized world used the language of human rights simply to assert every citizen’s claim to certain goods. On one panel, for instance, a Harvard researcher insisted on the right to voluntary counseling and treatment, and two Canadian scholars affirmed a right to microbicides. But they failed to provide any analysis on how these rights could ever be attainable elsewhere in the world. Fortunately, the richness of Mann’s proposal was not lost on researchers from the developing world. On the same panel, a Ukrainian and a Nigerian scholar named and examined the many goods and rights that need to be realized in order to make H.I.V. prevention possible.
Throughout the conference, the ABC mantra of H.I.V. prevention was the subject of debate. Many believed ABC to be naïve, frequently citing the disturbing fact that 15- to 24-year-old married women are the people in sub-Saharan Africa most at risk of H.I.V. infection. These women practice abstinence and fidelity, but such practices offer no protection from H.I.V.-infected husbands claiming their marital rights. Stoking the debate is the fact that some faith-based organizations tend to endorse A and B but reject C. The finest paper I heard on this topic was by Ann Smith of Britain’s Catholic Agency for Overseas Development (commonly known as Cafod). Smith gave a fairly complex interpretation of what the ABC would mean if it were attentive to the needs and the context of real people in the developing world. With great sensitivity, she bridged the fears and hopes of both sides of the H.I.V.-prevention debate, discounting ideology while recognizing the values that each side sought to protect. She illustrated how relevant nuanced and well-developed moral arguments can be, when they are inclusive of the many goods at stake.
I left Bangkok convinced that ethicists around the world must continue to support patients, caregivers, researchers, leaders and activists in the struggle against the most formidable pandemic in modern history.