Within but without: human rights and access to HIV prevention and treatment for internal migrants

The People's Republic of China

As a result of economic reforms, a surplus of rural labor and desperate rural poverty, internal migration has drastically increased in China in recent years. As of December 31, 2008, 140.4 million internal migrants in China worked outside their home village or township [13], an increase from only two million internal migrant workers two decades earlier [14]. Internal migrants make up a sizeable percentage of the urban population and workforce [15].

Through the system of hukou, the People's Republic of China requires the registration of every Chinese resident with the local authorities. Although the Chinese government has announced plans for its elimination [16], hukou allows individuals to live and work only where they are officially permitted [15], with one place of permanent hukou registration. Hukou status is inherited, so that children of rural-to-urban migrants are, like their parents, not registered urban residents [17]. Procedures to obtain temporary residence can be time-consuming, expensive, and difficult [18]. Only an estimated 40% of China's internal migrants typically obtain temporary or permanent permits [14].

While urban permit-holding residents in China have long been entitled to state-sponsored social welfare benefits including retirement pensions, food, education, and medical care, internal migrants still registered in their rural household of origin are denied such benefits [19]. Individuals without hukou are unable to access basic public services such as education [20] and health care [21], and therefore are forced to pay all costs [15, 21]. Amnesty International has noted that the vast majority of internal migrants in China cannot afford insurance schemes and rarely visit doctors or hospitals [18]. Human Rights Watch has documented widespread lack of insurance coverage for migrant construction workers, despite government guarantees of medical and accident insurance [19]. Furthermore, lack of health care coverage for sick migrants has, in the past, been compounded by additional, harsh consequences: For example, internal migrant workers have been returned to their home province under armed guard after being found to be HIV positive [22]. Though China announced the abolition of such "custody and repatriation" in 2003 [23], recent reports suggest that similar practices of detention and removal purportedly for health reasons are still practiced, particularly during periods of heightened political concern [24].

A range of studies have documented the disproportionately high prevalence of HIV among internal migrants: Multi-city HIV surveillance data between 1995 and 2000 revealed that over two-thirds of the HIV cases were found among rural-to-urban migrants. In 2000, 85.4% of Beijing's and 74.4% of Shanghai's new HIV infections occurred among migrants [25, 26]. Despite such high prevalence, and nationwide prevention campaigns in recent years, as well as studies calling urgently for HIV prevention programs addressing the particular circumstances of migrants [27], internal migrants in China have disproportionately low access to HIV/AIDS-related information [18, 26, 28]. United Nations reports have also remarked on the special vulnerability and difficulty of reaching with prevention programs the children of migrants, who lack access to the formal Chinese schooling system [29].

HIV-positive internal migrants' access to treatment remains extremely limited, confounded in part by the effects of the hukou system. Prior to 2003, ART was only available to the wealthy elite, as hospitals and clinics passed along to all patients the cost of HIV/AIDS examinations, tests, hospitalizations, treatment for opportunistic infections and ART treatment [22]. In 2003, the Chinese government announced a national HIV/AIDS treatment program--free to rural residents and poor urban residents--funded by national and provincial authorities [30]. However, despite such broad policy statements, universal HIV/AIDS treatment is far from a reality among the general population: In 2007, UNAIDS estimated that 190,000 people living with HIV were unable to access urgently needed ART in China, representing 81% of those in need [31]. Even when free treatment is ostensibly offered, delays in diagnosis and referral can create significant costs for the patient prior to the availability of free treatment, thus particularly disadvantaging migrants, who are not entitled to free basic health care [32].

The negative health consequences of the restrictive hukou system and related gaps in HIV/AIDS prevention and treatment for internal migrants have been exacerbated by the recent crisis in the world financial markets. For example, the loss of jobs in the export manufacturing sector, such as in the Pearl River Delta region, is anticipated to increase the number of migrant women working in the sex industry [33]. As unemployed internal migrants return to rural areas there is a potential for increased HIV transmission, as well as a risk that inadequate and weakened rural health systems will become overburdened [30]. Recognizing the current disparity in health care access, and widespread dissatisfaction, the Chinese government has recently announced plans for significant investment in basic health care services [35].

The Russian Federation

Vestiges of an internal registration system also plague access to health care for internal migrants in Russia. In the former Soviet Union, propiska--a residence permit stamp on internal Soviet passports--strictly limited movement and residence. Although propiska was officially abolished by the federal government in the 1990s, local and regional governments retain restrictive systems of registration for both temporary visitors and residents [36]. While reliable statistics are unavailable, government officials have estimated that over a million unregistered individuals may live in Moscow alone [37].

In recent years, legislative and other changes have led to the simplification and relaxation of some registration requirements [36–38]. Federal law and policy provide for freedom of movement and, while requiring registration [39], envision it as a non-discretionary, notice-based system open to all. However, in practice, registration is cumbersome and expensive, and lack of registration status may have serious official or unofficial consequences for internal migrants. Instances of unregistered migrants unable to legally marry, vote, send their children to school, and receive public assistance, have all been reported [36]. Indeed, individuals who are legally in the country but lack local registration have also reportedly faced such harsh consequences as detention, police abuses or deportation [36, 40, 41].

While the Russian government is constitutionally required to provide free medical care to all citizens [42, 43], regional authorities, responsible for the organization and financing of medical programs in their territories, regulate the conditions for access to medical care. Federally funded HIV treatment is officially provided free of charge to citizens [44, 45], but in practice major challenges exist in access to free health care generally as a result of inadequate federal and regional funding [46]. UNAIDS estimated in 2007 that 159,000 individuals needing ART were not receiving it, as only 16% of those requiring ART had access to treatment [47]. Internal migrants especially face barriers, as registration is a precondition for entitlement to many free health services [48, 49].

Human Rights Watch research has documented that internal migrants without registration are often denied both short-term (for purposes of Prevention of Mother to Child Transmission) and long-term antiretroviral treatment [50]. In Moscow, individuals must produce temporary registration and an official certificate of HIV-status in order to obtain ART at the Moscow AIDS Center. While unregistered international migrants may, in some cases, receive antiretrovirals for free, a non-resident requiring antiretrovirals will typically be directed to his or her city of origin to receive the treatment. Despite these barriers to accessing care, currently applicable Russian federal law on HIV/AIDS does not specifically address the particular challenges involved in providing HIV prevention, care and treatment services to migrants [44].

There is some preliminary indication that the global financial crisis may in fact lead to an increased movement into Russian cities, where the remaining registration systems prevent internal migrants from accessing some social services: According to the head of the Moscow Directorate of Internal Affairs, increasing unemployment as a result of the global financial crisis in Russia has lead to an influx of migrants from regions surrounding Moscow into the city in search of work. In addition to facing the restrictions detailed above, these internal migrants have been blamed for an increase in crime [51], and have encountered significant hostility and attacks [52].

Republic of India

India, like China and Russia, has high rates of internal migration--both rural-rural and increasingly rural-urban [1]--complicated by diverse cultural and linguistic traditions. An estimated 258 million adults in India are migrants [53]. While poverty and internal mobility itself does not lead to HIV transmission, unsafe sex and a change in sexual networks may [54, 55]. The World Bank has characterized migration and mobility, particularly for work purposes, as one of the major risk factors for HIV in India [56]. The national government's response to HIV/AIDS has recognized the key role that migrants have played in the on-going epidemic [57]. While the correlation between migration status and HIV infection in India may have been weakening in recent years [55], rising unemployment as a result of the financial crisis and the existence of return migration may have the potential to increase transmission [58].

Approximately 2.4 million people were living with HIV/AIDS in India in 2008 [59]. HIV prevention is seriously hindered by the low awareness of the disease among internal migrants, particularly from rural areas [56, 57]. UNAIDS India representatives have called for awareness campaigns specifically targeting the sending areas for internal migrants [54], however HIV prevention activities can be hindered by the mobile nature of this population [60], language, and cultural barriers [53].

Significant HIV/AIDS treatment gaps exist for all groups throughout the country, but migrants also face particular challenges in accessing health care [59, 61]. Health care is administered on a state-by-state basis in India, and in some states significant uncertainty exists among government officials as to whether state authorities are responsible for social welfare services to temporarily resident workers and their families [62]. Furthermore, internal migrants are often unable to use the government-issued "ration cards" outside their local home authority in order to access social services [63], and migrants may face significant logistical challenges and delays in procuring a new ration card [64]. Absent a ration card, it can be difficult to access even programs designed to provide health care to the poor, as some such services specifically target ration card holders [65]. Indeed, some local authorities reportedly refuse to provide ART entirely to individuals without ration cards [66]. In one area with extensive seasonal out-migration, a study concluded that internal migrants reported poorer health-seeking behavior than their non-migrant counterparts, a difference attributed to ignorance of behavioral risk factors, lack of knowledge of health facilities, and cultural and linguistic barriers [55].

Though not as severe as in some countries worldwide, the current global financial crisis has slowed economic growth in India and threatened to exacerbate preexisting levels of internal inequality [67]. Internal migrants are particularly vulnerable to increased unemployment and poverty, and the process of reverse migration has already begun [68]. The Governor of the Reserve Bank of India noted in February 2009 that social safety net programs in rural areas could help to mitigate the impact of the crisis for migrant workers who return home [69]; however, ART coverage throughout the country is plagued by broad gaps and failures and interruptions in treatment must be expected.

Right to highest attainable standard of health

All individuals have the right to enjoy the highest attainable standard of health, a right which has been enshrined in international and regional treaties. According to the Universal Declaration of Human Rights (UDHR), " [e]veryone has the right to a standard of living adequate for the health and well-being of himself and of his family, including food, clothing, housing and medical care and necessary social services." [6] The International Covenant on Economic, Social and Cultural Rights also guarantees the right of everyone to the highest attainable standard of health, and requires states parties to take steps individually and through international cooperation to progressively realize this right via the prevention, treatment, and control of epidemic diseases and the creation of conditions to assure medical service and attention to all [70]. "Progressive realization" demands of states parties a "specific and continuing obligation to move as expeditiously and effectively as possible towards the full realization of [the right]." [71] According to the WHO, " [w]hen considering the level of implementation of this right in a particular State, the availability of resources at that time and the development context are taken into account. Nonetheless, no State can justify a failure to respect its obligations because of a lack of resources." [72] The concept of available resources is intended to include available assistance from the international community [73].

The right to health is further guaranteed by a number of other international human rights treaties and commitments. The Convention on the Rights of the Child binds states to "recognize the right of the child to the enjoyment of the highest attainable standard of health and to facilities for the treatment of illness and rehabilitation of health. States Parties shall strive to ensure that no child is deprived of his or her right of access to such health care services." [74] The right to health is also protected under the International Convention on the Elimination of All Forms of Racial Discrimination [9], the Convention on the Elimination of All Forms of Discrimination Against Women [75], the International Convention on the Protection of the Rights of All Migrant Workers and Members of Their Families [76], and the Convention on the Rights of Persons with Disabilities [77]. Additionally, governments committed in the 2001 Declaration of Commitment on HIV/AIDS to "promote and protect all human rights and fundamental freedoms, including the right to the highest attainable standard of physical and mental health" and "in an urgent manner make every effort to: provide progressively and in a sustainable manner, the highest attainable standard of treatment for HIV/AIDS, including the prevention and treatment of opportunistic infections, and effective use of quality-controlled anti-retroviral therapy in a careful and monitored manner to improve adherence and effectiveness and reduce the risk of developing resistance" [78].

To be consistent with the right to health, the health resources provided should have the characteristics of respect for medical ethics, cultural appropriateness, and respect for confidentiality. Indeed, " [a]ll health facilities, goods and services must be... respectful of the culture of individuals, minorities, peoples and communities, sensitive to gender and life-cycle requirements, as well as being designed to respect confidentiality and improve the health status of those concerned" [71].

Principles of equality and non-discrimination

International law also establishes the fundamental principles of non-discrimination and equality. The Universal Declaration of Human Rights proclaims that " [e]veryone is entitled to all the rights and freedoms set forth in this Declaration, without distinction of any kind, such as race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status". [6] Additionally, under that Declaration, " [a]ll are equal before the law and are entitled without any discrimination to equal protection of the law" [6]. The ICCPR echoes the UDHR's proclamations against discrimination, binding states party to recognize the rights it guarantees without distinction of any kind, including based on race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth or other status [7]. The ICCPR also notes the equality of all persons before the law and requires that the law prohibit discrimination and guarantee equal protection against discrimination on any ground, including the above-noted ones [7]. The Human Rights Committee, the ICCPR's monitoring body, has determined non-discrimination, equality before the law, and equal protection, to be basic principles in the protection of human rights [79]. Indeed, the Human Rights Committee, the ICCPR's monitoring body, has noted that states must eliminate all discrimination and indeed in some cases may need to take affirmative steps to realize the value of that guarantee [79].

Non-discrimination in health

Numerous international and regional bodies have, considering the abovementioned right to the highest attainable standard of health and principle of non-discrimination, addressed specifically the prohibition on discrimination in health services. According to the Economic, Social and Cultural Rights Committee, the Covenant on Economic, Social and Cultural Rights' monitoring body, States must guarantee certain core obligations as part of the right to health, including ensuring non-discriminatory access to health facilities, particularly for vulnerable or marginalized groups; providing essential drugs; ensuring equitable distribution of all health facilities, goods and services; adopting and implementing a national public health strategy and plan of action with clear benchmarks and deadlines; and taking measures to prevent, treat and control epidemic and endemic diseases [71]. While the Committee notes the progressive nature of the right to health, it also points to the fact that states must immediately take steps to realize the right to health, and must immediately guarantee the exercise of the right without discrimination of any kind [71].

The right to health is thus centrally linked to the right to non-discrimination. Indeed, the Committee has noted that "the Covenant proscribes any discrimination in access to health care and underlying determinants of health, as well as to means and entitlements for their procurement, on the grounds of race, colour, sex, language, religion, political or other opinion, national or social origin, property, birth, physical or mental disability, health status (including HIV/AIDS), sexual orientation and civil, political, social or other status, which has the intention or effect of nullifying or impairing the equal enjoyment or exercise of the right to health...With respect to the right to health, equality of access to health care and health services has to be emphasized. States have a special obligation to provide those who do not have sufficient means with the necessary health insurance and health-care facilities, and to prevent any discrimination on internationally prohibited grounds in the provision of health care and health services, especially with respect to the core obligations of the right to health...." [71].

Discrimination against internal migrants--who are in fact citizens of the state in question--is banned under the Committee's Comments, which explicitly state that the Covenant prohibits discrimination based on "social origin." The ban against discrimination receives further confirmation when the Committee stresses each state's obligation to make health facilities and services accessible to everyone within the state's jurisdiction without discrimination, particularly the most vulnerable, so that health facilities, goods and services are within safe physical reach of "all sections of the population," "especially vulnerable or marginalized groups, such as ethnic minorities and indigenous populations, women, children, adolescents, older persons, persons with disabilities and persons with HIV/AIDS" [71]. Thus, the Committee findings make clear that the Covenant prohibits discrimination against internal migrants in receiving health care, and are an immediate call on all states parties to eliminate discrimination.

The Committee on the Rights of the Child has spoken specifically to the relationship between HIV/AIDS and the rights outlined in that Convention, determining that the right to non-discrimination should be one of "the guiding themes in the consideration of HIV/AIDS at all levels of prevention, treatment, care and support" [80].