Guinea worm

Guinea worm disease, also known as dracunculiasis, is caused by an infection with the nematode Dracunculus medinensis, which lives in the subcutaneous and connective tissues - generally of the legs. Guinea worm disease is characterized by a small, intensely painful blister that is formed by the adult female worm

(which, over the course of roughly 12 months' incubation, can grow to a meter in length) as it emerges to release its larvae. Larvae released into stagnant fresh water are ingested by tiny copepods (Cyclops spp.), which after two weeks of development are infective when swallowed.

Guinea worm is primarily a rural disease and, despite an enormous economic impact on rural communities, where it is endemic (and an enormous cumulative national economic impact), the disease was little noticed because its burden was primarily felt among the rural poor. Many health ministries in countries where it was endemic - a broad band across sub Saharan Africa, Yemen, Afghanistan, and Pakistan - had little awareness of the disease (Needham and Canning, 2003) and were doing virtually nothing about it.

In reaction to this neglect, in 1991 the Forty-Fourth World Health Assembly (WHA) laid out a strategy for Guinea worm eradication that includes three key governmental steps based on transparency and accountability (Hopkins and Ruiz-Tiben, 1991; WHO, 1991). The widespread availability of information on both epidemic and endemic infectious disease burdens helps to shape the process of the prioritization of response to public health threats. In democratic countries, this information can be used to facilitate the participation of civil society in setting the agenda and goals of public health campaigns and, through civil society involvement, of ensuring their effectiveness.

The first step in the proposed campaign for global Guinea worm eradication was to create a national plan based on a national survey to identify all endemic villages and assess the annual number of cases. In most of the countries affected, prior national surveys had greatly undercounted the number of people infected, and thereby understated the burden of disease. For example, prior to the national eradication program in Nigeria, less than 5000 cases were counted annually. After conducting a true national survey under the newly created Guinea worm program, between 640,000 and 650,000 cases were uncovered (Hopkins and Ruiz-Tiben, 1991).

The second step set out by the WHA strategy was to create safe water supplies using health education messages, "reinforced by religious and traditional/political leaders in the village, schoolteachers, agricultural and other extension workers, community organizations, and by the mass media (radio, posters, etc.) in the local languages" (Hopkins and Ruiz-Tiben, 1991). This kind of effort includes and fosters community participation, but perhaps more importantly encourages and re-emphasizes transparency and openness about infectious disease rather than suppression of information.

The third step, case containment, includes free treatment, which serves to encourage individuals to come forward for Guinea worm screening and health education. The total strategy for Guinea worm eradication illustrates a strategic balancing of concern for human rights and public health. It is an open and participatory approach. Governments demonstrate accountability to individual and community needs, and target the intervention in ways that are inclusive and non-coercive. Based on this strategy, 11 of the 20 nations most impacted by Guinea worm have been successful in eliminating the disease from their countries, and the overall number of people infected has been reduced from an estimated 3.5 million in 1986 to 10,674 in 2005 (Carter Center, 2006).

HIV and AIDS

When it was first recognized in the early 1980s, AIDS was labeled "gay-related immune deficiency" (GRID). Soon afterwards, it was discovered that HIV was easily transmissible through the sharing of syringes among injecting drug users. The association of a new and poorly understood disease with stigmatizing and criminal behaviors (as well as the widespread blame of "foreigners" for the introduction of the disease) led, quite predictably, to a wide range of ineffective, discriminatory, and stigmatizing public health control strategies. Throughout the history of the HIV epidemic, governments have variously attempted to criminalize HIV transmission, quarantine people living with HIV, and censor factual information about safer sex and drug use. Political leaders have pandered to the stigma surrounding HIV by denying the extent of epidemics in their countries, and, in some cases, suggesting that AIDS is a punishment for perverse and sinful behavior. Such policies and attitudes, largely discredited by experience and research, have pushed already vulnerable groups further to the margins of society and ultimately undermined both HIV prevention and human rights.

One of the most dramatic recent examples of this occurred in Thailand in 2003, when the Thai Government declared a "war on drugs." Prior to this, the Thai Government had received praise for its successful non-punitive approach to AIDS, exemplified by its efforts to promote condom use among sex workers and military conscripts in the 1990s. By contrast, the "war on drugs" was a harsh "zero tolerance" policy that flew in the face of proven HIV prevention strategies, such as provision of sterile syringes or oral methadone to people who inject drugs. Purportedly in response to a rise in methamphetamine use in the country, in January 2003 the then Prime Minister Thaksin Shinawatra called for "ruthless" drug enforcement based on "an eye for an eye" (Human Rights Watch, 2004). There followed a period of mass arrest and incarceration of drug users for even low-level crimes such as possession of narcotics and syringes for personal use. Thaksin instructed local officials to create "blacklists" of suspected drug offenders, and in August 2003 instituted a shoot-to-kill policy against alleged drug traffickers smuggling methamphetamines from neighboring Burma. By the end of the "first phase" of the drug war, an estimated 2275 people had been shot dead in apparent extrajudicial executions (CNN, 2003; AFP, 2003). Thaksin blamed these killings on internecine violence among drug traders, yet at this writing a full investigation of the killings still has not taken place, despite some indication that investigations might occur in the wake of Thaksin's having been overthrown

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003-2004 Source: Unpublished Data, Sarkar S, UNAIDS SEAPICT

Figure 15.2 Estimated and observed number of methadone maintenance therapy patients in Thailand, 1992-2004. Source: Sarker, S., Joint United Nations Programme on HIV/AIDS Southeast Asia and Pacific Intercountry Team (unpublished data, 2004).

1993 1994 1995 1996 1997 1998 1999 2000 2001 2002 2003-2004 Source: Unpublished Data, Sarkar S, UNAIDS SEAPICT

Figure 15.2 Estimated and observed number of methadone maintenance therapy patients in Thailand, 1992-2004. Source: Sarker, S., Joint United Nations Programme on HIV/AIDS Southeast Asia and Pacific Intercountry Team (unpublished data, 2004).

in late 2006. Throughout the drug war, senior government officials encouraged violence against drug suspects. At one point Thaksin said: "There is nothing under the sun which the Thai police cannot do ... If there are deaths among traders, it's normal" (Human Rights Watch, 2004).

In addition to the assault on individual rights, Thailand's "war on drugs" proved to have a negative impact on public health. While pronouncing that drug users were "patients" in need of treatment, Thai police in fact subjected drug users to mass urine testing and detention in military-style boot camps. Many drug users were incarcerated in prisons where syringe-sharing was common and access to HIV prevention information and services was minimal to non-existent. Instead of seeking drug treatment and HIV prevention services, many drug users escaped into hiding (Human Rights Watch, 2004). One study revealed that 37 percent of drug users who had formerly attended drug treatment centers in Chiang Mai were staying away, and that there was an increase in sharing syringes because sterile syringes were more difficult to obtain (Bhatiasevi, 2003). The HIV rate among Thailand's injecting drug users has remained at approximately 40 percent since the 1990s, even as it has declined among sex workers and the general population (see Figure 15.2).

The plight of women in sub Saharan Africa also illustrates the link between human rights abuse, poor governance, and HIV/AIDS. A case in point is the Kingdom of Swaziland - the last remaining absolute monarchy in Africa, and home to the highest estimated rate of HIV infection in the world. As of 2005, an estimated 38 percent of the country's adult population was HIV-positive (Joint United Nations Programme on HIV/AIDS, 2005). Most of those infected are women and girls, due to their increased biological risk of acquiring HIV through unprotected heterosexual sex and also because of the country's pervasive violence, discrimination, and economic marginalization of women. These social forces inhibit the ability of girls and women to make informed decisions about their health in general, and specifically with regard to protecting themselves from HIV (Human Rights Watch, 2003). The country's monarch, King Mswati III, reigns over a system of both absolute monarchy and extreme patriarchy. While a recently ratified constitution contains guarantees of both a balance of powers and gender equality, the mechanisms to enforce these guarantees - independent courts, a robust civil society, and a political opposition - do not exist. The country has been under an official "state of emergency" since 1973, with the King retaining effective control over all branches of government.

In addition to the pervasive authoritarianism and disrespect for the rule of law, the underlying social context of the AIDS epidemic includes the widespread subordination of women to men. Seventy-five percent of all land is considered "Crown land," which is governed by highly patriarchal and gender-biased customary law (Scholz and Gomez, 2004) that prevents women from owning, inheriting, or disposing of property. A Swazi woman enjoys the right to use her father's property, but is expected to marry and depend on the property of her husband. Married women are treated as the legal equivalent of minors, unable to sign contracts or represent themselves in court. If a woman is widowed or separated from her husband, her property typically reverts to (or is grabbed by) her husband's family. Because of these conditions, it is perilous for Swazi women to leave even violent marriages, to refuse sex, to object to polygyny, or to insist on condom use. This helps to explain why in Swaziland, as in numerous African countries, a significant percentage of HIV infections among women occur in marriage. Married women may be unable to seek health care or information because of a lack or resources or dependence on their husband or male relatives. They are also less likely than men to have attended school, where they might have gained access to information about HIV prevention or the skills to become economically independent.

SARS

This section stems from discussion with Jennifer Prah Ruger, and draws upon her 2005 article "Democracy and health" in the Quarterly Journal of Medicine, 98, 299-304.

The case of Severe Acute Respiratory Syndrome (SARS) in China illustrates how a lack of democratic freedoms can render a country unable to respond promptly to a new health crisis. In 2003, when SARS first emerged in the southern Chinese province of Guangdong, the Chinese Government's immediate response was to cover up, rather than reveal, both the scope and severity of the disease. The government's censorship of news about the spread of SARS ultimately accelerated the spread of the disease (The Economist, 2003a; Rosenthal, 2003) by limiting the information available both to citizens (who needed information on precautions and care) and to national and international government health authorities (who needed information to inform decision-making and improve their understanding of a poorly understood disease). Further hindering an effective response, the government threatened citizens with execution and lengthy imprisonment should they become infected with or knowingly spread SARS (Eckholm, 2003).

As news of SARS in China spread through unofficial channels imperfectly monitored and controlled by the Chinese Government, the Chinese Government reversed direction and pledged honest reporting of infections and accountability of public officials (for example, they fired both the Mayor of Beijing and China's Health Minister). While these steps at first brought hope for more effective public health strategies and wider political reform (The Economist, 2003b), subsequent efforts fell short of that goal. Far from acting as an independent and free agent, the Communist Party's newspaper, People's Daily, instead served as a Party instrument by publicly praising government leadership and strategies and misreporting public opinion. For example, it noted that "the people have become more trusting and supportive of the party and government" (Eckholm, 2003).

China's failure to contain and effectively address SARS ultimately increased pressure on global institutions such as the World Health Organization (WHO) to become more actively involved in "governance" at an international level, resulting in reforms intended to allow it to "fight future international threats" more powerfully (Stein, 2003).

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