HIV/AIDS AND THE
NUTRITION RIGHTS OF INFANTS
George Kent
Department of Political Science
University of Hawai’i
Honolulu, Hawai’i  96822-2231
U.S.A.
Email: kent@hawaii.edu

George Kent is Professor and Chair, Department of Political Science, University of Hawai'i. He serves as Coordinator of the Task Force on Children's Nutrition Rights for both the World Alliance on Nutrition and Human Rights and the World Alliance for Breastfeeding Action. Although he has consulted with others, these views are his own and do not necessarily represent those of any other individuals or organizations.
 

CONTENTS

1. Introduction
2. The HIV/AIDS and Infant Feeding Debate
3. Framework
4. Feeding Alternatives
5. Prudent Judgment
6. Nutrition Rights
7. Women’s Rights to Breastfeed vs. Infants’ Rights to be Breastfed
8. Fundamental Principles
9. Recommendations
10. The HIV/AIDS and Human Rights Agenda
 

ABSTRACT

How should infants of HIV-positive mothers be nourished? Alternative means of feeding may be even more risky than breastfeeding. Parents need to be able to make informed choices regarding feeding strategies, but this is impossible where information is wholly inadequate. There is uncertainty regarding the likelihood of transmission of the virus through breastfeeding, uncertainty regarding the consequences of HIV infection in infants, lack of knowledge of ways in which the negative consequences might be ameliorated, inadequate understanding of the alternative approaches to feeding, etc.

Guidelines for infant feeding should be based on the infant’s human right to nutrition, established in the Universal Declaration of Human Rights, the International Covenant on Economic, Social and Cultural Rights, the Convention on the Rights of the Child, and other international agreements. Application of the basic principles of nutrition rights in relation to HIV/AIDS implies that (1) parents have not only a need but also a right to be well informed, and (2) they have a right to good information not only about breastfeeding but also about a broad range of alternative feeding methods. The right of informed choice implies a right to good information.
 
 


HIV/AIDS AND THE
NUTRITION RIGHTS OF INFANTS
George Kent
January 23, 1999

1. INTRODUCTION

There is a serious debate now underway regarding the feeding of infants by mothers who are HIV-positive. The major tension arises out of the fact that under some circumstances the dangers of breastmilk substitutes may outweigh the risk of being infected with HIV through breastfeeding. Factual information is scarce, and opinions tend to be strong.

Most observers agree that parents should be free to make informed choices, but that freedom is of little value when the information available is grossly inadequate. Governments have responsibilities relating to the quality of our health care and the quality of our food, and they also have responsibilities regarding the quality of our knowledge about these things. Thus the core question of how to feed infants in the context of HIV/AIDS raises serious human rights issues. My purpose here is to bring out the role of human rights in the debate.

After presenting an overview of the debate, I suggest a framework for structuring our thinking about the issues. Then I make a brief statement on feeding alternatives. After that, the human rights considerations relating to nutrition are introduced. I present basic principles describing the human rights of infants with regard to nutrition, and follow this with a brief discussion of possible tensions between the rights of the infant and the rights of the mother. I conclude with a discussion of how the basic principles describing infants’ nutrition rights might be extended in the context of HIV/AIDS.

My conclusion is that some of the guidelines proposed in the debate regarding feeding of infants of potentially HIV-positive mothers should be added to the fundamental principles describing the human rights of infants in relation to nutrition. In particular, the infant’s human rights to nutrition imply that the parents have not only a need but also a right to good information about a broad range of feeding alternatives.

2. THE HIV/AIDS AND INFANT FEEDING DEBATE

In recent years there has been a great deal of concern with the possibility of transmission of HIV from mother to child, in the uterus, during the birth process, or through breastfeeding. Predictably, the suggestion that the virus can be transmitted through breastmilk has raised concern about whether mothers who are HIV-positive should breastfeed their infants. If there is some chance that HIV can be transmitted through breastfeeding, how should mothers who are HIV-positive feed their infants? The experts are having trouble agreeing on appropriate guidelines.

In October 1995, the U.S. Food and Drug Administration’s FDA Consumer magazine published an article that said without qualification, "Women who are HIV positive should not breast-feed (Williams)." Presumably it referred only to the United States context.

In May 1997 the Joint United Nations Programme on HIV/AIDS (UNAIDS), the World Health Organization (WHO), and the United Nations Children’s Fund (UNICEF) issued a joint "HIV and Infant Feeding" policy statement (UNAIDS, 1997). It took an "informed choice" approach, meaning that mothers were free to choose the method of feeding, but should be fully informed of the benefits and risks of each in their particular circumstances.

Similarly, in June 1997 the American Academy of Pediatrics’ Committee on Pediatric AIDS said "in the United States where suitable alternative sources of nutrition are readily available, HIV-infected women must be counseled not to breastfeed or provide expressed breast milk to any infant (Committee on Pediatric AIDS, 1997)".

In the early 1990s, UNICEF, WHO, and UNESCO collaborated in preparing a small booklet, Facts for Life, to communicate the most important guidelines relating to child care (Adamson). The section on AIDS said:

A mother with the AIDS virus should continue to breastfeed her baby. There is a very small risk that the AIDS virus could be passed on to the baby by breastfeeding. But the risks of bottlefeeding a baby are known to be very much greater, especially in a poor community. In May 1998, the relevant provisions of Facts for Life were updated as follows: In June 1998 UNAIDS announced New Initiatives to Reduce HIV Transmission from Mother-to-Child in Low-Income Countries (UNAIDS, New Initiatives…). They centered on joint UNAIDS/ UNICEF/WHO pilot projects aiming "to offer voluntary and confidential HIV counseling and testing to pregnant women, and to provide those who learn they are infected with antiretroviral drugs, better birth care and safe infant feed methods". Regarding feeding: UNICEF will work with governments and suppliers of milk products to identify practical ways of helping pilot countries to provide alternatives—such as home-prepared and commercially-prepared infant formula—to mothers participating in the projects. WHO, UNICEF and the UNAIDS Secretariat will continue to protect, promote and support breastfeeding as the best feeding method for infants whose mothers are HIV-negative or do not know their HIV status. Among other things, this means ensuring that the methods used for producing and distributing alternatives to breast milk comply with the International Code of Marketing of Breast-milk Substitutes and subsequent resolutions of the World Health Assembly. Old debates about the merits of formula feeding are now being revisited in the context of HIV/AIDS. A journal in South Africa ran a special issue on the question (Special Report…). In a letter to the influential British medical journal, The Lancet, Michael Latham and Ted Greiner, experts on breastfeeding, said they were troubled by "the new proposals to conduct large-scale trials in several developing countries to replace breastfeeding with formula feeding in HIV-1 positive mothers". They said: We are concerned that WHO and UNICEF will invest major resources in formula feeding and few into alternatives, such as modified breastfeeding, heat treatment of expressed breastmilk to kill the virus, wet nursing, donation (or even sales) of breastmilk, and use of animal milks or homemade formulas. These options are preferable to the use of infant formulas in poor communities. None of them are easy, nor ideal, but they warrant careful study. Much of the successful work over the years to stem the use of commercial breastmilk substitutes in poor countries is now threatened. The involvement of the commercial infant formula industry, both in deliberations leading to the new policy and also in offering to make their products available, is troubling.

We recommend that the UN agencies assess carefully the economic, social, and health consequences of their new policy, and that they provide adequate support to allow investigations of alternative methods. It is a grotesque reality that all HIV-1 infected mothers cannot have full coverage of antiretroviral therapy, that so many mothers and infants do not have access to adequate health care, and that inequities lead to a high prevalence of malnutrition. Given this unfortunate situation, is it wise to be recommending the costly and risky approach of formula feeding for infants born to poor HIV-1 infected mothers (Latham and Greiner)?

In June 1998 the Steering Committee of the World Alliance for Breastfeeding Action issued a statement, WABA Position on HIV and Breastfeeding. It said, in part, that WABA is concerned about what appears to be recent changes in the WHO, UNICEF and UNAIDS policy regarding breastfeeding and HIV. We are especially concerned that these changes appear to put major stress on the use of infant formula and less on alternative feeding methods (World Alliance ...). The statement closed by saying "Extreme caution must be shown in involving the commercial firms that have direct economic interests in the outcome of such policy deliberations."

In June 1998 WHO published three manuals on HIV and Infant Feeding (World Health Organization, HIV and …). They offer a comprehensive overview of the issues, but focus on the objective of preventing HIV transmission through breastfeeding. They do not acknowledge that under some circumstances, it might be better to risk transmission of the virus and try to minimize or ameliorate its consequences. With qualifications, the approach advocated centers on finding ways to provide breast-milk substitutes to infants of HIV positive mothers, possibly with the support of government subsidies. The health risks and the economic plausibility of this approach are not assessed.

On July 26, 1998 the New York Times ran a front-page article on "AIDS Brings Shift in U.N. Message on Breast-Feeding". It began . . .

Countering decades of promoting "breast is best" for infant nutrition, the United Nations is issuing recommendations intended to discourage women infected with the AIDS virus from breast-feeding. It added: In its directive, the United Nations said it was deeply concerned that advising infected mothers not to breast-feed might lead many mothers who are not infected to stop breast-feeding. To reduce that possibility, it is advising governments to consider bulk purchases of formula and other milk substitutes, and to dispense them mainly through prescriptions (Altman). On October 5, 1998 the Committee on the Rights of the Child held a day of general discussion on "Children Living in a World with HIV/AIDS". Its report said: Participants discussed at length the need for additional research and to look for strategies that minimize the risk of mother-to-child transmission of HIV without automatically promoting the use of bottle-fed formula. Alternatives such as warming mother’s milk to destroy the virus, or establishing breast-milk banks, [using] wet nurses, etc. need to be better explored, and health care workers must be trained on the availability of such alternatives and on the need to support the mother’s decisions, with primary consideration given to the best interests of the child (Committee on the Rights of the Child). The argument developed below is that to set the task as being "to look for strategies that minimize the risk of mother-to-child transmission of HIV" is to set off in the wrong direction from the outset.

3. FRAMEWORK

The debate has not been clearly structured. As I see it, the core question is, in the context of HIV/AIDS, how should parents be advised to feed their infants? The objective is to formulate clear advice that health workers can give to parents in a variety of different situations. Guidance for the parents should provide not only scientific sorts of information but also suggestions on how to think through the question. Thus health workers’ advice might come in the form: "If you are in this situation and you have these preferences, you should feed your infant by this method." The scientists and policy analysts should be able to back up the advice with clear evidence and argument.

In principle, health workers could be provided with a contingency table to determine which advice is appropriate under particular circumstances. We can imagine a contingency table with three columns. The first column specifies the particular conditions that matter in giving advice, such as information on local circumstances; clinical, social, and economic data on the family in question; and information on their beliefs and preferences. The second column describes the feeding advice appropriate for the set of conditions described in that row. The third column provides the evidence and argument supporting that advice. Each row can be read across, filling in the sentence, "If conditions A prevail, then take action B, for reasons C". For those contingencies in which it is not clear what advice ought to be provided, the researchers and policy analysts have more work to do.

In this debate it is important not to confuse the advice given to parents or health workers with the demands made of scientists and policy analysts. Parents and health workers cannot be expected to undertake the basic research and analysis work that is needed. Most importantly, parents cannot be expected to make responsible informed choices when they do not have the information that is required to make such choices.

In trying to work out appropriate advice, several different kinds of concerns arise:
 

(a) Likelihood of transmission.  One report says that prior to the widespread use of antiretroviral therapy, the rate of transmission of HIV from HIV-positive mothers to their infants ranged from 14% to 33% in the United States and Western Europe, and in the developing world, rates as high as 43% have been reported (Stoto, Section 4, p. 1). According to another report, in the United States, "The maternal to infant transmission rate is approximately 20% to 30%, with the majority of infants who are born to an infected mother being ultimately uninfected (Committee on Pediatric AIDS, 1997)". Another study reported a transmission rate without drug treatment in the U.S. of 15% to 30% (Burr).

These figures are estimated rates of transmission through all three pathways—during pregnancy, in the birth process, or through breastfeeding. The rate of transmission through breastfeeding itself is a fraction of this figure. Some have estimated that breastfeeding by HIV-positive mothers increases the risk of HIV infection of the infant by about 14 percent (Le Couer). Some reports suggest "the incremental risk of transmitting HIV infection to the breastfeeding infant range from 3% to 12% in various African populations (Committee on Pediatric AIDS, 1995)."

One study estimated that only about one percent of infected infants are infected through breastfeeding (Burr). If, as this source estimates, the transmission through all three paths is between 15% and 30%, this means that at most about 0.3% of the infants of HIV-positive mothers are at risk of infection through breastfeeding.

For the U.S., it has been estimated that where there is transmission of the virus to the infant, 70% to 75% of the cases occur during delivery, and 25% to 30% occur in utero (Stoto, Section 4, p. 1). This suggests that at most only about 5% of the cases of infection occur as a result of breastfeeding. If, as they estimate, the overall transmission rate is at most about 33%, then the risk of infection of infants by HIV-positive mothers through breastfeeding is at most about 1.65%.

There are many uncertainties about these figures. While the transmission of the virus through breastfeeding has been widely discussed, there is in fact little firm knowledge about how likely it is to happen.
 

(b) Influences on likelihood of transmission. While there may be some sort of broad average regarding the likelihood of transmission, it is important to keep in mind that the likelihood may differ for different subpopulations in different kinds of circumstances.

Also, the transmission likelihood may be influenced by different kinds of treatments. For example, a recent review of the relevant literature says that maternal micronutrient deficiencies may increase incidence of infections and viral load in the mother's body fluids, including breastmilk. Furthermore, maternal micronutrient deficiencies may influence the micronutrient status of the infant, thereby affecting the infant’s immune functions and susceptibility. Two of the studies reviewed suggest that maternal vitamin A deficiency in particular could lead to increased exposure of the child for HIV (Friis and Michaelsen). Recent studies show that supplementation with multivitamins is better than vitamin A alone. However, some of these studies do not make a sufficiently clear distinction between the breastfeeding route and other paths of mother-to-child transmission of the virus. Further research is needed to identify the impact of vitamin supplementation on HIV transmission via breastfeeding.

There may also be differences depending on methods and timing of breastfeeding. A mother in advanced stages of disease may be more likely to transmit the virus through breastfeeding. In addition, because of her illness, she may be less able to sustain breastfeeding, and less able to care for her infant whether the infant is infected or not. Also, there may be differences in the virus content of colostrum and early human milk compared with later milk.

It may matter whether the infant is fed exclusively through breastfeeding, rather than in combination with other foods. It has been suggested that feeding with anything but breastmilk may risk damaging the mouth and gut of the infant, thus increasing the ease with which the HIV can pass into the child’s blood.
 

(c) Likely consequences of infants’ HIV infection via breastfeeding. In Thailand it has been found that about half the children born with HIV develop AIDS rapidly and die within two years (UNAIDS, 1996). However, the pattern for children who are not born with HIV but contract the virus through breastfeeding could be different. The immunological properties of breastmilk could outweigh the effects of the virus, or some other mechanism might intervene. The 1995 report by the Committee on Pediatric AIDS on "Human Milk, Breastfeeding, and Transmission …" cites two studies that suggest the potential protective effects of human milk from HIV.

A physician in Uganda claims that "If mothers who are infected with the virus do not breastfeed, their children will have a far better chance of survival." How can he be so sure when he also acknowledges that "In rural areas, 85 percent of babies will die from dirty water used in formula (Specter)"?

If an infant contracts the virus through breastfeeding, what are the likely consequences in terms of morbidity and mortality? How frequently does the virus lead to increased morbidity and mortality associated with AIDS? It may be that the course of HIV/AIDS is different in infants than it is in older people.

It is often recommended that mothers who are designated HIV-positive should not breastfeed because that would prevent the transmission of the virus through breastmilk (Williams; Ramanathan). While it is clear that without breastfeeding there would be no possibility of  transmission through that route, it is not clear whether the infant would be better off as a result.

In discussions about feeding choices by HIV-positive mothers, there is a preoccupation with the possible transmission of a virus through breastfeeding. There is practically no discussion of the consequences of that transmission. In the absence of explicit information, people tend to assume the worst.

For the purposes of formulating feeding advice, however, it is not necessary to know the likelihood of virus transmission via breastfeeding. To guide policy as to whether an HIV-positive mother should breastfeed or use some other specific feeding procedure, we need to know and compare the consequences, in terms of the infant's health, that are likely from taking each of these courses of action. The feeding strategy is the key independent variable and health outcome is the key dependent variable. HIV transmission via breastfeeding is an intervening variable that need not be visible in the analysis. For policy purposes, the research needs to focus on likely consequences for the infant, not on the proposed intervening mechanisms. Moreover, it is much easier to assess health outcomes than to try to track a poorly identified virus whose role in causing disease is not entirely clear.

Most critically, we don’t know how the prospects for breastfed infants of HIV positive mothers differ from the prospects of those who are not breastfed. We don’t know what this difference is for infants of infected mothers who are born virus-free and we don’t know what it is for infants of infected mothers who are born with the virus.

Whatever the likely negative consequences of infection of infants with HIV via breastfeeding may be, it is possible that with treatment some of them could be ameliorated. Of course this raises questions about the capacity to deliver treatment. This capacity may be limited by cost or by the development of disease in the mother.

HIV testing is normally done not through detection of the virus itself but through the detection of antibodies that are presumed (but, many say, have not been plainly demonstrated) to be associated with HIV. One of the important advantages of breastfeeding is precisely the fact that it transmits immunological properties from the mother to the infant. Thus, while the prevailing view is that the presence of antibodies in the infant is a cause for alarm, it should perhaps be viewed as just the opposite, a highly desirable finding.
 

(d) Knowledge of Mother's HIV status. The current consensus among international agencies is that advice regarding feeding alternatives should be provided only when the health worker knows for certain, on the basis of laboratory testing, that the mother is HIV-positive. This position is based largely on the need to respect the privacy of women who may be HIV-positive. In some cases even their spouses may not know, thus creating extremely delicate situations. The task of formulating advice is especially difficult because there may be circumstances in which concern for confidentiality must be balanced against concern for the interests of the child.

There are at least four different kinds of concerns about this premise that advice should be offered only when a laboratory test has demonstrated that the mother is HIV-positive.

First, currently available methods of testing are highly unreliable, as acknowledged repeatedly in the HIV/AIDS literature.

Second, because of costs, reluctance to submit to tests, administrative difficulties, and other factors, widespread testing is not feasible, especially in poor countries.

Third, it appears that most people now described as having AIDS have not been tested. What advice, if any, is to be given to those who are presumed to have AIDS but have not been tested?

Fourth, why shouldn't advice be given to all, rather than being given only to those who have been tested and shown by the test to be HIV-positive?

Further thought needs to be given to the ways in which advice ought to depend on the character and quality of different parties’ knowledge about the mother’s HIV/AIDS status. At any given moment, the mother, the health worker, the mother's spouse, and the surrounding family and community may have different beliefs regarding her status. Moreover, those beliefs may be influenced in different ways depending on the feeding practice she adopts.

Similarly, more thought must be given to the question of what advice, if any, should be given when the mother's HIV/AIDS status is not definitely known—not to the health care worker, and perhaps not to the mother herself. Advice should be considered at least for those cases in which there is good reason to believe that the mother is likely to be infected.

Where a health worker does not know a mother’s HIV status, it might be appropriate to give advice in a conditional form: "If you believe you are HIV positive, you should . . . ." Conditional advice of this form allows the health worker to respect the mother’s concerns for confidentiality. It also makes it possible to advise women in groups.
 

(e) Knowledge of Infant's HIV Status. To show that an infant becomes HIV-positive as a result of breastfeeding, it would be necessary to show that the infant is HIV-negative at birth and then HIV-positive after a period of breastfeeding. However, it is not possible to know whether a newborn infant is HIV-infected because it is not possible to distinguish between maternal antibodies and the infants own antibodies in the newborn infant’s bloodstream. Thus there is really no good way to determine whether HIV-infected infants are infected as a result of breastfeeding rather than during pregnancy or in the childbirth process. As indicated above (in Section 3a), it may be that only a small proportion of infected infants are infected as a result of breastfeeding. The proportion is not clearly known, and it may not be knowable.
 

(f) Clarify and assess alternatives. If one is going to recommend against breastfeeding, what are the alternatives? It is sometimes automatically assumed that the alternative to breastfeeding is using commercial infant formula. There are in fact many options, discussed in the following section. The alternatives need to be plainly identified, and their merits and demerits in different circumstances need to be systematically assessed. If breastfeeding does lead to increased risks of morbidity and mortality of the infant due to AIDS, it is important to determine how these might compare with the risks associated with alternative forms of feeding.
 

(g) Variations across populations. All of these considerations may differ in different populations, so one must be careful about generalizations. For example, it has been estimated that while the average rate of mother-to-child transmission of the virus is around 25%, rates vary from less than 14% in Europe to 45% in sub-Saharan Africa ("Recommendations ...", p. 313). The advice may need to be different according to whether the family being advised lives in a poor area or rich area, or whether the family itself is of low or high socio-economic status. Or there could be other kinds of systematic variations. For example, some of the considerations may vary in important ways among cultural groups. Thus, one of the many contingencies that needs to be taken into account is the type of population, but we do not yet know what variations in types really matter.
 

(h) Responsibility. The agencies that discuss the question of feeding strategies by HIV-positive mothers are cautious. Instead of providing clear instructions, they say mothers "might want to consider" using formula rather than breastfeeding, and they qualifiy their positions with numerous cautionary remarks. Despite the agencies' cautions and qualifications, their persistent expression of alarm over the risk of virus transmission tends to lead health workers and mothers to only one conclusion: HIV-positive mothers should not breastfeed. Surely, if the agencies interviewed health workers and mothers, they would find that their careful cautions and qualifications have been lost by the time they reach the ground.

Mothers are urged to make informed choices, but they are not provided with the means required to do that. The agencies avoid responsibility by saying the choice must finally be made by the mother herself, but they fail to meet their responsibility to assure that mothers are provided the information they need.
 

(i) Quality of Policy Analysis. There is a tendency to jump to conclusions based on the untested assumption that breastfeeding by HIV-positive women is bad for their infants. To illustrate, research trials in Thailand showed that a "short-course" ZDV treatment can substantially reduce the rate of mother-to-child of HIV. (ZDV is zidovudine, the generic name for azidothymidine, or AZT.) The research trials were done with HIV-positive women who were counselled to not breastfeed, and instead exclusively bottle-fed their infants with formula. Subsequently, it has become common practice to recommend that women who are given this treatment use formula. A key report says that together with the treatment, "breast-milk substitutes (commercial infant formula or other products for home preparation) must be organized ("Recommendations ...", p. 316)." However, research results on the use of the short-course treatment with breastfeeding women were not yet reported at the time these recommendations were made. The fact that the women in the research trials did not breastfeed does not establish that it is wiser to not breastfeed. There was no evident basis for recommending that women taking the short-course treatment should not breastfeed. Apparently it was grounded in the unchallengeable assumption that the possibility of transmission of any virus through breastfeeding will be eliminated if there is no breastfeeding.

It was argued that, "Thus for maximum reduction of MTCT [mother-to-child transmission], alternatives to breastfeeding should be considered and their acceptability and safe use examined in developing countries where breastfeeding is the norm ("Recommendations ...", p. 317)."  Moreover, "Women must be informed that breastfeeding may reduce the effectiveness of treatment with ZDV ...." This illustrates the preoccupation with the issue of minimizing the likelihood of virus transmission, when the issue of concern should be the well-being of the infant.

The majority of infants of HIV-positive mothers are not infected. Probably most of those who are infected are infected during pregnancy or during the birth process, rather than as a result of breastfeeding. Depriving all of these infants of the benefits of breastfeeding should not be recommended without a sound basis in evidence and argument.

Moreover, it would seem to be especially beneficial to breastfeed infants believed to be at risk of immune deficiency (AIDS). All infants of HIV-positive mothers are exposed to that risk.

If a newborn child is already HIV-positive as a result of transmission during pregnancy or in the birth process, presumably there would be no added risk from breastfeeding.

There are remarkable inconsistencies in the discussions. Why is there so much concern for HIV transmission via breastfeeding in poor countries when, in a recent thorough study of mother-to-child transmission in the United States, the issue was passed over lightly, and the discussion of strategies for preventing transmission of the virus did not even mention feeding options (Stoto)?
 

(i) Radical Challenges to the AIDS Hypothesis. The doubts created by the concerns listed so far are relatively minor when compared with the level of doubt created by radical challenges to the widely accepted belief that AIDS is caused by HIV. The debate began in 1987 when Peter Duesberg argued, in the journal Cancer Research, that HIV could not possibly be the cause of any immunological disorders (Duesberg, 1987; Duesberg, 1996; Farber, "Does HIV …"; Giraldo; Root-Bernstein; Shenton). The debate continues. Some critics say, for example, that AIDS is neither an infectious disease nor is it sexually transmitted, and that HIV has not been isolated as a real virus (Giraldo). In this discourse HIV is commonly referred to as "the alleged virus suggested to cause AIDS"--and AIDS itself is viewed as very ill-defined. There is now an extensive literature, and there are a number of websites devoted to challenging orthodox thinking on HIV and AIDS (AIDS Hypothesis Challenges). The argument of this essay is not based on this line of radical questioning, but it certainly tends to reinforce the argument.

4. FEEDING ALTERNATIVES

One of the most common errors in policy analyses is the unquestioning acceptance of an overly simple construction of the alternative courses of action. Often there are many alternatives that should be considered, including many variations on specific ones. Alternatives are not simply given, but can be created and modified to meet particular needs. Policy analysts should be inventive.

Breastmilk can be provided in many different ways, and many of these variations can make a difference in the context of HIV/AIDS. Exclusive breastfeeding is different from breastfeeding combined with other liquids or solids. Breastmilk can be delivered directly from the source, or indirectly. Wet nurses, relatives, or friends can provide direct breastfeeding. Or the mother’s breastmilk can be provided indirectly by being expressed, heat treated to inactivate the virus, and then supplied to the infant with a cup. There are also several alternatives to breastmilk, including not only commercial products but also home-made formula based on fresh or processed animal milks, suitably diluted with water and with added sugar and micronutrient supplementation.

The use of commercial formula may itself be managed in a variety of ways. For example, some proposals call upon national governments to pay for the formula and provide it free to HIV-positive mothers. Some hope there will be international subsidies. Some proposals call for using generic labels on formula containers to minimize the promotion of particular brands. It is generally agreed that the use of commercial formula should be in conformity with the International Code of Marketing of Breastmilk Substitutes and subsequent clarifying resolutions of the World Health Assembly.

Considerable effort should be devoted to identifying and creating alternatives, and to designing variations on them. All plausible options should be fairly assessed. For example, while banking of breastmilk may have been deemed impractical in the past, in the context of HIV/AIDS there should be renewed interest in its potential. Even commercial milk banking, with appropriate safeguards, might be feasible (Rao).

5. PRUDENT JUDGMENT

Parents need to make decisions and health workers need to give guidance even in the face of uncertainties. As shown above, there are many important questions still unanswered regarding infant feeding choices in the context of HIV/AIDS. What should be done while we wait for these questions to be resolved?

In addressing this dilemma, it is useful to review our current state of knowledge regarding infant feeding. There is one dominant finding. Outside the HIV context, in practically every kind of situation in which infants are able to breastfeed, they are better off breastfeeding than not breastfeeding. The use of breastmilk substitutes is medically indicated only when the mother or the child is unable to sustain breastfeeding, or is taking pharmaceutical or recreational drugs that may be dangerous for the infant. An exception is the rare case in which the infant has a disease called galactosemia. An informal review by a breastfeeding advocate of arguments for formula feeding failed to bring up any other conditions in which there is a plausible claim that the use of infant formula benefits the infant (Hallberg).

There may be occasions when the negative impact of not breastfeeding on the infant is judged to be small, and the apparent added convenience of not breastfeeding seems important to the mother, at least in the short term, but it has never been shown that the use of formula works to the infant’s advantage. Even when the mother suffers from a variety of ailments, if she is able to breastfeed, the infant is better off being breastfed. Outside the HIV/AIDS context, there are no conditions under which it has been shown that infants are better off with infant formula.

The same conclusion applies to the HIV/AIDS context. There is as yet no scientific evidence that infants of mothers who are HIV-positive would be better off if they were not breastfed. There has been a great deal of inference and surmise suggesting this conclusion, but until now there is no hard evidence to support it. It has been claimed that HIV can be transmitted via breastmilk. That has not been clearly demonstrated, but even if it were, that observation alone should not determine the feeding decision. As indicated earlier, in Section 3, many other factors intervene to determine the consequences for the infant.

So far there are practically no conditions under which it has been shown that breastmilk substitutes are better for the infant than breastmilk. Thus experience suggests that even in the context of HIV/AIDS, so long as there is doubt and uncertainty, the safest course is likely to be breastfeeding. Prudence suggests that until clear evidence and argument to the contrary are presented, even HIV-positive mothers should breastfeed their infants. New policies can be considered when solid new evidence has been obtained.

If this line of reasoning is not convincing, and one wishes to minimize the risk as much as possible while waiting for more thorough research findings, it is clear that the least-risk options are the use of expressed and warmed breastmilk from the mother, or the use of breastmilk from other women obtained from carefully selected wet nurses or milk banks.

6. NUTRITION RIGHTS

In Los Angeles, a woman diagnosed as HIV-positive was confronted by social workers from the Child and Family Services agency because she was breastfeeding her child. They told her to go with them and have herself and her baby tested, or they would take the baby. She went with them. On the way to the testing site the officials stopped to buy infant formula, and demanded that the woman stop breastfeeding immediately (Farber, "HIV and …).

The editor of the magazine in which this story was reported commented that "Current treatment of HIV-positive mothers violates all known standards of informed consent as set down by US jurisprudence, the American College of Obstetrics and Gynecologists, and the International Childbirth Education Association." She could have pointed out that it also violates the mother’s and the infant’s human rights in several ways. My purpose here is to examine just one aspect of these multi-faceted violations, the violation of the infant’s human right to nutrition.

The articulation of food and nutrition rights in modern international human rights law begins with the Universal Declaration of Human Rights (Universal Declaration …). The declaration asserts in article 25(1) that "everyone has the right to a standard of living adequate for the health and well-being of himself and his family, including food . . . ."

The right was reaffirmed in two major binding international agreements. In the International Covenant on Economic, Social and Cultural Rights (which came into force in 1976), article 11 says that "The States Parties to the present Covenant recognize the right of everyone to an adequate standard of living for himself and his family, including adequate food, clothing, and housing . . ." and also recognizes "the fundamental right of everyone to be free from hunger . . . (International Covenant …)."

In the Convention on the Rights of the Child (which came into force in 1990), two articles address the issue of nutrition. Article 24 says that "States Parties recognize the right of the child to the enjoyment of the highest attainable standard of health . . .(paragraph 1)" and shall take appropriate measures "to combat disease and malnutrition . . . . through the provision of adequate nutritious foods, clean drinking water, and health care (paragraph 2c)." Article 24 says that States Parties shall take appropriate measures . . . "To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition [and] the advantages of breastfeeding . . . ." Article 27 says in paragraph 3 that States Parties "shall in case of need provide material assistance and support programmes, particularly with regard to nutrition, clothing, and housing (Convention on the Rights ...)."

Thus, the human right to food and nutrition is well established in international law. Even if the right had not been stated directly, it would be strongly implied in other provisions such as those asserting the right to life and health, or the Convention on the Rights of the Child’s requirement (in article 24, paragraph 2a) that States Parties shall "take appropriate measures to diminish infant and child mortality". The human right to food and nutrition has been reaffirmed at the international level in many different settings.

The foundations for the international human right to food and nutrition lie in the binding international human rights instruments in which they are explicitly mentioned, primarily the International Covenant on Economic, Social and Cultural Rights and the Convention on the Rights of the Child. Other binding international human rights agreements such as the Convention on the Elimination of All Forms of Discrimination Against Women contribute to the articulation of relevant rights (Convention on the Elimination …).

Several non-binding international declarations and resolutions also help to shape the emerging international consensus on the meaning of the human right to food and nutrition. The major initiatives include the following:

There is increasing recognition at the international level that good nutritional status is an outcome that depends not only on good food but also on good health services and good care (Engle; Longhurst). Health services include a broad range of measures for the prevention and control of disease, including the maintenance of a healthy environment. Thus, infant feeding is not simply a matter of the physical transmission of nutrients. There should be a strong component of caring in it, through the closeness and contact that can be provided during feeding. Breastfeeding can be regarded as a kind of health service because of the fact that it immunizes the infant against a broad variety of diseases.

Because of their immediate and direct dependence on their mothers, the nutrition status of infants is determined not only by the quality of the food, health services, and care they receive directly, but also by the food, health service, and care received by the mother herself. The infant’s nutrition status at birth depends on the quality of the mother’s health status and prenatal care, and whether she has had a good diet in general and has been protected from iron deficiency anemia in particular.

Women have their own rights. Their claims to good treatment are augmented by virtue of their children’s dependence on them. That is, mothers should be entitled to particular services not only because of their own rights but also because of their obligations to provide for their children. Mothers should receive good pre-pregnancy and prenatal care, and parents should be well informed about the risks and benefits of all alternative means for feeding their infants because their infants have a human right to good nutrition.

7. WOMEN’S RIGHTS TO BREASTFEED
vs. INFANTS’ RIGHTS TO BE BREASTFED

What is the relationship between the mother’s interest in breastfeeding and the infant’s interest in being breastfed? How do the mother’s rights relate to the infant’s rights?

Infant care and feeding are affected by many different parties, including the infant, the parents, siblings, the extended family, the community, health professionals, employers, infant formula manufacturers and sellers, local government, national government, and others. Each party has its own interests and its own capacities to press for outcomes preferable to itself. At times infants are not nurtured properly because of the pull of others’ interests. They are all concerned, more or less, with the infant’s health, but they also have other interests such as profits, increased leisure time, and having opportunities to do other things. Where these parties do not all have preferred outcomes that are consistent with one another, there is conflict among them.

At times the mother and the infant may have conflicting interests. The conflict is raised in clear relief when it is argued that the infant has a right not only to be well nourished but, more specifically, that the infant has a right to be breastfed. Such a right could clash with the woman’s right to choose how to feed her infant.

Article 3 of the Convention on the Rights of the Child says that "In all actions concerning children . . . the best interests of the child shall be a primary consideration". Combining this with the observation that breastfeeding is better than alternative methods of feeding, some breastfeeding advocates argue that infants have a right to be breastfed. However, this appears to be a minority view.

While it is true that actions must be based on consideration of the best interests of the child, that is not the only consideration. Moreover, it is assumed that normally the parents judge what is in the child’s best interests. The state should interfere in the parent-child relationship only in extraordinary situations, when there is extremely compelling evidence that the parents are acting contrary to the best interests of the child.

The infant has great interests at stake, but few resources to be used to press for preferred outcomes. Given the infant’s powerlessness, it is sensible to use the law to help assure that the best interests of the infant are served. However, while it is surely appropriate to use the law to protect the infant from outsiders with conflicting interests, it is not reasonable to use the law to compel an unwilling mother to breastfeed. Thus, for the purposes of framing appropriate law, the woman and infant can be viewed as generally having a shared interest in the infant’s well being. From the human rights perspective, the major concern is with protecting the woman-infant unit from outside interference.

The prevailing view is that women must remain free to feed their infants as they wish, presumably in consultation with other family members, and that outsiders are obligated to refrain from doing anything that might interfere with a freely made, informed decision. It is assumed that they have appropriate and accurate information available to them. This is the approach taken in the International Code of Marketing of Breastmilk Substitutes. The code is not designed to prevent the marketing or use of formula, but to assure that parents can make a fully and fairly informed choice on how to feed their infants.

Rather than have the state make decisions for them, citizens in a democracy prefer assurances that nothing impedes them from making good decisions. To the extent possible we should be free to choose, and that includes being free to make what others might regard as unwise decisions.

8. FUNDAMENTAL PRINCIPLES

In my view, the human rights of infants with regard to nutrition may be summarized in a few fundamental principles:
(1) Infants have the right to be free from hunger, and to enjoy the highest attainable standard of health.

 (2) Infants are entitled to good food, good health services, and good care.
 
(3)Mothers have a right to breastfeed.
 
(4) Infants have the right to be breastfed if their mothers choose to breastfeed.
 
(5) A reluctant mother cannot be legally compelled to breastfeed.
 
(6) Human rights law requires respect, protection, and facilitation by outsiders—and particularly by the state--of the nurturing relationship between mother and child.
 
(7) Infants are entitled to assurance that their parents are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition and the advantages of breastfeeding.
 
(8) Infants are entitled to expect that their mothers have good prenatal care.
 
(9) Infants are entitled to baby-friendly health facilities.
 
(10) Infants are entitled to assurances that, through appropriate maternity legislation, their mothers have adequate opportunities to nurture them. 

9. RECOMMENDATIONS

The idea that parents should be able to make informed decisions remains valid in the context of HIV/AIDS. However, its application depends on the decision-makers, primarily mothers, being aware of and having real access to a range of feeding alternatives, and it depends on their having good information about these available alternatives. Where commercial interests are represented, the presentation of options and the information about them are likely to be sharply skewed.

The ten principles regarding the human rights of infants with regard to nutrition apply in the context of HIV/AIDS; they are not to be suspended. This means, for example, that even HIV-positive mothers have a right to breastfeed. If any country were to prohibit HIV-positive mothers from breastfeeding, that would violate their human rights, and also violate their infants’ human rights.

Particular attention should be given to Principle 7 which focuses on the obligation to assure that the infants’ parents are well informed with regard to their infant feeding choices. This is the major idea underlying the International Code of Marketing of Breastmilk Substitutes. The code does not prohibit marketing or use of formula, but insists that promotion activities for the products must be conducted in ways that are fair rather than being skewed to favor commercial products. Article 24, paragraph 2e of the Convention on the Rights of the Child goes directly to the point. It calls upon States Parties "To ensure that all segments of society, in particular parents and children, are informed, have access to education and are supported in the use of basic knowledge of child health and nutrition, the advantages of breast-feeding, hygiene and environmental sanitation and the prevention of accidents." This is a legally binding obligation on all States Parties to the convention (all countries except the United States and Somalia), and a strong moral obligation on those that are not. From the debate relating to HIV, it is now increasingly clear that the full array of feeding options should be presented to the parents, and better research is needed about the advantages and disadvantages of each option in particular local circumstances.

In addition, there is a need to enable the mother to learn whether she is HIV-positive through voluntary counseling and testing so that she can make an informed decision regarding the feeding of her infant in relation to her own condition. This counseling should include factual information on the limitations, validity, and meaning of the test.

These points can be formulated as Fundamental Principles on the human rights of infants with regard to nutrition where there is significant risk of HIV infection through breastfeeding. These principles, to be added to the ten listed earlier, might be stated as follows:

    (11) Regardless of the mother’s HIV status, infants are entitled to assurance that their parents are informed of the full range of feeding alternatives and their advantages and disadvantages in the local circumstances.
     
    (12) Women in their child-bearing years are entitled to accessible voluntary testing and counseling regarding HIV/AIDS. This counseling must include information about the limitations, validity, and meaning of the test, and about the benefits and risks of various feeding alternatives in the local circumstances.
     
    (13) Infants are entitled to expect that their governments will help to make quality feeding alternatives available, including expressed and heated breastmilk, or breastmilk from others obtained through wet nurses, milk banks, or other comparable arrangements.
     
    (14) Infants are entitled to expect that their governments will seek to obtain and provide the unbiased information needed by their parents regarding HIV/AIDS and feeding alternatives.
In other words, as a consequence of the infant’s human right to nutrition, parents are entitled to good information about a broad range of feeding alternatives.

These are tentative formulations, offered to stimulate discussion. Principles of this sort should be considered in preparing policy at the global level, and also in the drafting of national legislation and national policies relating to HIV/AIDS.

10. THE HIV/AIDS AND HUMAN RIGHTS AGENDA

The first international consultation on HIV/AIDS and human rights was held in Geneva in July 1989 ("Human Rights and AIDS"). The second was held in Geneva in September 1996. The issues have been examined in several excellent publications such as HIV/AIDS and the Law: A Resource Manual published in South Africa (Fine) and journal articles in Health and Human Rights and elsewhere (Tarantola; Whelan). The UNAIDS Guide to the United Nations Human Rights Machinery published in 1997 is very useful (UNAIDS, 1997). However, these consultations and publications have given practically no attention to the issue of transmission of HIV from mother to child. Even the UNAIDS Guide's annex on "Possible Issues to be Addressed by the United Nations Committee on the Rights of the Child in the Context of HIV/AIDS" did not mention possible HIV transmission from mother to infant, whether during pregnancy, at birth, or through breastfeeding.

Until now, studies on HIV/AIDS and human rights have centered on protecting people with HIV and AIDS from discriminatory and coercive actions. They should also give attention to the human rights dimensions of infant feeding in the context of HIV/AIDS. Clear principles are needed to assure the realization of the human rights of both infants and their parents.

The need for women to be informed about "the risks and advantages of breastfeeding for the infant if the mother has HIV" was recognized in a draft prepared at a seminar in South Africa in 1997 (AIDS Law Project). This point should be elaborated in two ways: (1) parents have not only a need but also a right to be well informed, and (2) they have a right to good information not only about breastfeeding but also about a broad range of alternative feeding methods.

It has been clear that the scientific issues relating to infant feeding in the context of HIV/AIDS need further research and elaboration. Now it should be recognized that infants and parents have a right to this information, and thus have a right to expect that governments and international agencies will develop that information and have it delivered to them. The right of informed choice implies a right to good information.
 
 
 
 
 
 
 
 
 
 
 


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