“The success of antiretroviral drugs (ARVs) is no more; many patients are seriously suffering,” says Hadija Rama, program manager for the Isiolo Pepo la Tumaini, a nonprofit in northern Kenya that helps people living with HIV. “They have developed health complications because they cannot afford basic food, let alone a balanced diet. . . . Some families have been forced to increase spending on food to ensure their HIV-positive family members have a balanced diet, at the expense of other essential requirements . . . Meanwhile, other, poorer individuals living with AIDS had started to reject free, life-prolonging ARV medication because of the side effects of taking the drugs on an empty stomach.” HIV-Positive People Feeling the Pinch of High Food Prices.
Food is a human right, and for people living with HIV and AIDS (PLHIV), it is also a primary defense in the ongoing struggle to maintain their health, stamina, and quality of life. For those on lifesaving ARVs, food helps them meet the challenge of strict adherence to their medication. For vulnerable families and communities, food serves as a weapon in the battle to prevent further spread of the virus. And for those already living with the disease’s devastating effects (such as the death of a parent or spouse), food can mitigate the often overwhelming impact, and help families get back on their feet.
This article uses a human rights perspective to examine the role of food (and the right to food) in the context of delivering prevention, treatment, care, and support to PLHIV and others affected by HIV. It considers the following questions: Why is a human rights perspective needed? And what does it mean within the context of food and the HIV pandemic? Why are food, nutrition, and HIV inextricably connected? How can we practically apply human rights concepts within the realm of the global HIV response? What are the unique challenges and where do we go from here?
Why Is a Human Rights Perspective Needed?
Human rights conventions set the foundation for development objectives of the countries that ratify them, and act as a standard for what can be expected from that country’s citizens. “When addressing food and health issues in the HIV context, this means that the international and regional human rights instruments protecting relevant rights are the starting point for setting aims of development programs.” Alessandra Sarelin, Human Rights-Based Approaches to Development Cooperation, HIV/AIDS, and Food Security, 29 Hum. Rts. Q. 2 (2007).
Moreover, these instruments help us to view the process of providing services to people affected by HIV and AIDS as one of fulfilling their rights , instead of providing charity. Empowerment is a crucial concept of rights-based approaches to development, and although targeting the poor and disadvantaged is not new to the development agenda, by acknowledging that the poor have human rights, “beggars are transformed into claimants.” André Frankovits and Patrick Earle, The Rights Way to Development: Manual for Human Rights Approach to Development Assistance (Human Rights Council of Australia, 1998). Furthermore, governments are made accountable to those claimants for the fulfillment of their rights.
Several human rights treaties and conventions make links between the right to food and HIV, most commonly by describing food as a precondition to achieving the right to health. In General Comment 14 on the right to the highest attainable standard of health, the Committee on Economic, Social and Cultural Rights makes far-reaching links between the right to health in Article 12 of the International Covenant on Economic, Social and Cultural Rights (ICESCR), and the right to food in Article 11 of the same covenant.
The committee makes clear that state obligations under the right to health include measures relating to access to food. States must “ensure access to the minimal essential food which is nutritionally adequate and safe.” CESCR, General Comment on the Right to the Highest Attainable Standard of Health, G.C. no. 14 ¶ 4, 11, 43, U.N. Doc. E/C 2000 (Dec. 4, 2000). The UN Food and Agriculture Organization’s 2004 “Right to Food Guidelines” notes that “States should address the specific food and nutritional needs of people living with HIV/AIDS or suffering from other epidemics . . .” UN Food and Agriculture Organization (FAO), Voluntary Guidelines to Support the Progressive Realization of the Right to Adequate Food in the Context of National Food Security, adopted by the 127th session of the FAO Council, Nov. 2004.
The obligation to fulfill rights means facilitating and promoting the enjoyment of those rights. For PLHIV and others affected by HIV, this obligation means (1) states are obliged to take positive measures to facilitate (enable) PLHIV and affected communities to enjoy the right to health; (2) in situations beyond their control, states intervene to provide necessary support and services; and (3) states promote the right to health by making information available and promoting activities to facilitate informed choices about one’s health, nutrition, and lifestyles. See CESCR, 2000; Sarelin.
Finally, nondiscrimination is a paramount principle in human rights law and is found in various international instruments. General Comment 12 urges governments to focus on “the need to prevent discrimination in access to food or resources for food. This should include guarantees of full and equal access to economic resources, particularly for women, including the right to inheritance and the ownership of land and other property . . . .” CESCR, General Comment on the Right to Adequate Food, G.C. no. 12 ¶ 26, U.N. Doc. E/C 1999 (Dec. 5, 1999); Arne Vandenbogaerde, The Right to Food in the Context of HIV/AIDS, (2009).
Applying a rights-based approach in the context of HIV means delivering HIV services and food in an integrated manner (to address the rights to both); ensuring access to the specific food requirements of PLHIV; and promoting nondiscrimination in every way possible.
Why are Food, Nutrition, and HIV Inextricably Connected?
The story from northern Kenya at the opening of this article is not unique. Similar accounts of patients not taking their medications because of food shortages have been reported from across Africa, Asia, and Latin America. For PLHIV, as for all humans, food is a human right. But for this particularly vulnerable group, the need to ensure consistent and reliable access to nutritious food takes on considerable urgency.
Without addressing the special nutritional needs of PLHIV, a downward spiral of risk, vulnerability, and illness is certain. And when the individuals dying of AIDS are principle earners of the family income, or primary caregivers of infants and children, the impact goes far beyond the suffering of the infected person. The impact can undermine the food security, livelihoods, health, education, and welfare of families and communities for generations to come. Why, then, is food so essential to those infected and affected by HIV and AIDS?
Malnutrition and PLHIV
Even for people without HIV, immune functions are undermined by malnutrition. But malnutrition is significantly more complex for PLHIV because of the added stress placed on an already-weakened immune system. HIV diminishes nutritional health in three mutually reinforcing ways: (1) Reduced food intake. PLHIV often consume less food because of loss of appetite, mouth and throat sores, pain and nausea, side effects of medication, or from worsening household poverty and food security; (2) Altered metabolic processes. HIV and AIDS change the body’s metabolism so that more energy is demanded —20 to 30 percent for those who are symptomatic; and (3) Impaired nutrient absorption. Nutrients are poorly absorbed because of diarrhea and vomiting, damaged intestinal cells, and other effects of opportunistic infections.
The vicious cycle of HIV and malnutrition can rapidly accelerate weight loss and wasting. Significant weight loss in HIV-positive individuals is associated with increased risk of opportunistic infections, complications, and early death. See Henrik Friss, Micronutrient Interventions and HIV Infection: A Review of Current Evidence , 11 Tropical Med. & Int’l Health 1849 (2006).
ARVs interact with food and nutrition in a variety of ways, resulting in both positive and negative outcomes. ARVs can reduce the viral load of PLHIV and contribute to improved nutritional status, but they can also create additional nutritional needs and dietary constraints. The right foods must be taken at the right time in order to maximize a patient’s adherence to the drugs; minimize unhealthy, often painful side effects; and achieve optimal drug efficacy.
Mothers and Children
The transmission of HIV from mother to child (in the womb, during the delivery, or through breast feeding) accounts for the vast majority of children infected with HIV. Without interventions to prevent transmission, 30 to 40 percent of HIV-positive women will pass the virus to their infants. See www.unaids.org. Malnutrition in the mother is associated with poor birth outcomes among HIV-positive women. Maintaining a healthy diet during pregnancy and while breastfeeding can mean the difference between life and death for the newborn.
For infants and children, the progression of HIV to AIDS is more rapid than in adults, increasing their malnutrition risk. Approximately 20 percent of infected children will have rapid progression of disease and die by 12 months; 50 percent will die by the age of 3; and less than 25 percent will survive beyond the age of 5. See Elizabeth M. Obimbo et al., Predictors of Early Mortality in a Cohort of Human Immunodeficiency Virus Type 1-Infected African Children, 23 Pediatric Infectious Disease J. 536 (2004); Claire de Menezes et al., HIV and Food: From Food Crisis to Integrated Care (ACF International, 2007). Many of these children will experience (and may die of) malnutrition, either as a direct physiological consequence of the virus, or from the family’s inability to provide a nutritious diet.
The association between HIV and severe malnutrition is increasingly obvious. A study at Queen Elizabeth Central Hospital in Malawi showed that 34.4 percent of children admitted for severe malnutrition were HIV-positive. See Susan Thurstans et al ., HIV Prevalence in Severely Malnourished Children Admitted to Nutrition Rehabilitation Units in Malawi: Geographical and Seasonal Variations: A Cross-Sectional Study (2006). Sadly, one agency running therapeutic feeding centers in Malawi noted that “once discharged, many of the same children and their siblings returned with repeated episodes of malnutrition, suggesting poor capacity of the families to meet nutrition requirements.” See Claire de Menezes et al.
The relationship between HIV and food also affects those who are not infected with the virus, because HIV is intimately connected to food insecurity. A large body of evidence demonstrates that as people become desperate to feed themselves and their families, they resort to risky coping strategies to avoid hunger. Risky strategies include migration to urban areas for employment; sex in exchange for rent, food, etc.; and sending children to temporarily live with friends or relatives, where they may not have adequate protection from exploitation or abuse. Even taking children out of school to augment family income contributes to increased risk of HIV, as education has been shown to be one of the greatest protective factors against acquiring HIV for young people.
HIV disproportionately affects prime working-aged adults, killing the most productive members of society. For families whose breadwinner(s) are HIV-positive and experiencing declining health, the entire household is more likely to become food insecure, because the person they rely on is physically less able to produce income. Negative coping strategies follow, such as the sale of productive assets (e.g., livestock or land), further exacerbating vulnerability. The combination of challenges facing PLHIV and their families places them in a deleterious cycle that is difficult to reverse. See Kara Greenblott, Social Protection in the Era of HIV and AIDS: Examining the Role of Food-Based Interventions (World Food Programme, 2007).
How Can We Apply These Human Rights Concepts
To fulfill the rights of people infected and affected by HIV and AIDS, programmatic responses must recognize and address the inextricable links between food security, nutrition, and HIV, both in terms of the physiological impact of the virus on PLHIV and in terms of the socioeconomic impact of the pandemic on vulnerable members of our societies.
Paragraph 28 of the 2006 UN Political Declaration on HIV/AIDS lays the political groundwork for recognizing, creating policies for, and delivering integrated HIV, food, and nutrition programs:
The United Nations Member States resolve to integrate food and nutritional support, with the goal that all people at all times will have access to sufficient, safe and nutritious food to meet their dietary needs and food preferences, for an active and healthy life, as part of a comprehensive response to HIV/AIDS.
Rights-based approaches in the context of HIV should focus on developing the capacities of both “rights holders” (PLHIV and those affected by HIV) to claim and realize their rights, as well as the capacities of “duty bearers” (i.e., governments and their international partners) to meet their obligations in the provision of food and HIV-related services. This article advocates the following three strategies for addressing both sides of this equation:
Integrate HIV, Food, and Nutrition Interventions
Integrated programming means we ensure that food security and nutrition are assessed, analyzed, and supported in all aspects of prevention, treatment, care, and support to people affected by HIV and AIDS. While there are a myriad of ways to integrate programming, there are two examples worth mentioning.
Link food to antiretroviral treatment (ART) and prevention of mother-to-child transmission (PMTCT). Linking food and nutrition support to ART and PMTCT programs offers a range of benefits: Food rations increase participation in these services by PLHIV and HIV-positive mothers who otherwise can’t afford transport and other associated costs. Nutrition assessment, education, counseling, and timely dietary support, can improve nutrition status and adherence to drugs, and, for HIV-positive mothers, ultimately improve maternal and infant health. Counseling on optimal child feeding is crucial to reducing HIV transmission, and can be further supported by providing safe, suitable food for the infant and young child, as well as for the mother. Fulfilling a mother’s right to accurate nutritional information will help her to make a safe, informed decision about how to feed her children.
Promote access to food for HIV- and AIDS-affected families . The right to adequate food does not mean that everyone is entitled to receive food. It denotes people’s right to feed themselves in dignity through economic and other activities, and states’ responsibility to support these efforts. See Vandenbogaerde. Helping PLHIV and affected families to construct homestead and community gardens, promote savings and loans groups, undergo business training, learn vocational skills, and receive other livelihoods support are all effective ways to promote access to food, while preserving dignity.
When people are not able to provide for themselves, states must intervene and protect their rights to food and health. Social protection in the form of social transfers (e.g., pensions for the elderly, school fee waivers) are the norm in the west, but still underutilized in developing countries, although they are effective antidotes when people are forced to make untenable choices—i.e., between food, education, and health care. Modern definitions of social protection include legal assistance to enforce the inheritance rights of widows and orphans, and assisting ill parents in the creation of a succession plan for their children. See Kara Greenblott, Social Protection for Vulnerable Children in the Context of HIV and AIDS: Working Towards a More Integrated Vision, (IATT on Children and HIV and AIDS, supervised by UNICEF, 2008).
Ensure the Right Kind of Food
The right to the “minimal essential food which is nutritionally adequate and safe” is a vital stipulation made in paragraph 28 of the 2006 UN Political Declaration on HIV/AIDS. For infants born to HIV-positive mothers, the situation is extremely complicated. Current guidance from the UN World Health Organization (WHO) recommends that HIV-infected mothers breastfeed their infants exclusively for the first six months unless a “replacement food” meets WHO conditions of being “acceptable, feasible, affordable, sustainable and safe (AFASS)” before that time. When replacement feeding becomes AFASS, it is recommended that the mother switch to the replacement food to minimize risk of transmission.
The problem is that “providing a nutritionally adequate diet for a 6 to 24-months-old baby in the absence of breast milk is extremely challenging for these moms, especially in food-insecure environments. The lack of a nutritionally suitable food commodity for this time period is one of the most urgent challenges faced by service providers.” Kate Greenaway, Food by Prescription: A Landscape Paper (GAIN Working Paper Series No. 2, 2009).
Generally, ready-to-use therapeutic foods (RUTFs)—foods that are nutrient dense and digestible for those with special dietary needs—have enjoyed popularity in humanitarian circles in recent years. But as they can be prohibitively expensive for many resource-constrained settings. More research and resources are needed if we are to fulfill the right to adequate food for all.
Stigma reduction campaigns, HIV education, training on the rights of children, and other efforts to protect PLHIV (and children made vulnerable by HIV) from social exclusion are much needed. A common result of marginalization is reduced access to food and vital services.
At one hospital in Zambia, care providers admitted that HIV-positive patients were often not given the same services because doctors knew they were going to die. See Menezes. UN assessments in Malawi and Lesotho revealed cases where caretakers did not treat orphans the same as their own. There were biases toward biological children when it came to sharing food, paying school fees, and assigning chores. See Greenblott; Greenaway. Throughout southern Africa, children living outside of family settings (and not in school) do not benefit from school feeding and other forms of social protection that they would otherwise receive had they not become “invisible” to the state.
Where Do We Go from Here?
Structural impediments. Donors, governments, and implementing agencies have historically separated health from food programs, creating structural impediments to the shift toward integrated programming. While most agencies employ health specialists, nutritionists, and even people who focus on specific diseases, none have point people who focus on family care, PLHIV, or vulnerable children and their holistic needs and rights.
Evidence and advocacy. Despite calls for more evidence over the last decade, there is still a dearth of empirical data confirming the links between food and nutrition on one hand, and HIV transmission, HIV progression, treatment adherence, and treatment efficacy on the other. Better data combined with improved advocacy are needed to shift donors, host governments, and service providers from ad hoc “integrated experiments” to national programs that fully integrate both sides of the formula.
Similarly, key funding sources, such as the various U.S. departments providing foreign assistance, struggle to work together effectively. Collaboration has improved, but there is a long way to go before we have truly integrated programs.
Sharing what we know. We are still climbing the steep side of the learning curve when it comes to the three recommended strategies in the preceding section. We need to better understand (1) what kinds of integrated programs really work and are sustainable; (2) what affordable kinds of foods meet the special dietary needs of PLHIV; and (3) how to undo the damaging effects of stigma and discrimination.
Adequate food and nutrition cannot cure HIV infection, but they can delay the progression of HIV to AIDS, reducing health-care costs and allowing PLHIV to remain productive. Adequate nutrition is absolutely essential if we are to achieve the optimal benefits of ART and reduce the transmission of HIV from mother to child.
As Dr. Paul Farmer, infectious disease specialist and human rights advocate, often repeats, “Providing medicine without also providing food is like washing your hands and then drying them in the dirt.” It is time to acknowledge and enforce the right to food for people living with and affected by HIV.