HIV and Breastfeeding

By George Kent
Mothering May 1999

In the shadow of AIDS, we face new and wrenching issues of how best to care for children. One expert says: Don't forget whose needs must be paramount -- the child's.

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 the HIV virus through breastfeeding. Factual information is scarce, and opinions tend to be strong.

Most observers agree that parents should have the freedom to make informed choices, but this freedom is of little value when the information available is grossly inadequate. Yet some parents are being told they must avoid breastfeeding or their children will be taken from them.

Thus the core question of how to feed infants in the context of HIV/AIDS raises serious human rights issues. My purpose in writing this article is to look at some of these issues, many of which have been overlooked by policy makers and journalists.

Infant Feeding in the Age of AIDS

In recent years there has been a great deal of concern about the possibility of transmission of HIV from mother to child. Predictably, the suggestion that the virus might be transmitted through breastmilk has raised concern about whether mothers who are HIV positive should breastfeed their infants. But most experts in the field are having trouble agreeing on appropriate guidelines, leaving parents hopelessly confused.

In October 1995, for instance, the US Food and Drug Administration's FDA Consumer magazine published an article that said without qualification, "Women who are HIV positive should not breast-feed." Presumably it referred only to the US.

On the other hand, 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 in May, 1997. It called for "informed choice," meaning that mothers should be free to choose the method of infant feeding, but to do so, must be fully informed of all the benefits and risks.

Laying out these benefits and risks a year later, the UN issued an update of its Facts for Life booklet, which covers many aspects of child care. In the section on AIDS, it stated, in effect: If a mother is infected with HIV/AIDS there is a risk that breastfeeding may give the virus to her uninfected baby; if, however, she chooses to use formula, there's a risk of her baby getting diarrhea and other life-threatening illnesses; and finally, for mothers who do not have HIV/ AIDS, breastfeeding is the best way to ensure the survival and healthy development of their babies.

Only months after this booklet was first published, the UN significantly shifted its position on breastfeeding, officially announcing that it would discourage all women who are HIV positive from breastfeeding their babies.

The reaction to this announcement was swift and strong, reigniting many old debates about the merits and demerits of formula feeding. In a letter to the influential British medical journal The Lancet, two experts on breastfeeding, Michael Latham and Ted Greiner, said they were troubled by "the new proposals to ... replace breastfeeding with formula feeding in HIV-1 positive mothers. 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," they concluded.

Should Infected Mothers Nurse?

Today, with the UN policy change providing the impetus for ongoing debate, the core question becomes, as I see it: In the context of HIV and AIDS, how should parents be advised to feed their infants? We need to formulate clear advice that health workers, in turn, can give to parents in a variety of different situations. Guidance for the parents should include not only scientific data but also suggestions on how to think through the issues involved. This, of course, requires that the parents be in possession of as much scientific and medical information as possible. They cannot be expected to make responsible, informed choices otherwise.

The information they must have would include:

• Rates of transmission. Estimates of the risk of transmission of the HIV virus through breastmilk range from as much as 14 percent to as low as 1 percent. And there are uncertainties about all these estimates. While possible transmission of the virus through breastfeeding has been widely discussed, there is so far little firm scientific knowledge about how likely it is to happen.

• The facts in each individual case. Whatever the true rate of infection, the likelihood that any one mother will transmit the virus is widely variable. A recent review of the relevant literature suggests, for instance, that maternal vitamin A deficiency may well lead to increased risk to the child from HIV. (Further research is needed on this topic.) Also, mothers in more advanced stages of the disease may be more likely to transmit the virus through breastfeeding. Each mother/ child situation must then be looked at individually and its particular risks assessed.

• The consequences of transmission. Will children who are born HIV free but later contract the virus through breastfeeding go on to develop AIDS? The immunological properties of breastmilk could outweigh the effects of the virus, or some other mechanism might intervene. Several studies already have suggested that breastmilk may provide potentially protective effects against HIV.

• The infant's HIV status. Testing of infants is highly suspect, because the markers used to test for the disease -- certain antibodies -- may have been passed to the child by the mother's immunologically rich breastmilk, in which case the child will test positive for HIV infection when, in fact, he or she is negative.

• Feeding alternatives. If one is going to recommend against breastfeeding, what are the other options? Most policy makers automatically assume the only alternative is using commercial infant formula. But there are many options, from heat treating expressed breastmilk to using breastmilk from a milk bank. These options' merits and demerits need to be systematically assessed, which has not hitherto been done. If, however, we as a society decide to legally mandate against breastfeeding by HIV-positive women, we must be sure we know all the risks associated with the alternatives.

Prudent Judgment

To summarize the above: The majority of infants of HIV-positive mothers will not become infected as a result of breastfeeding. Therefore, depriving all infants born to HIV-positive mothers of the benefits of breastfeeding seems unwarranted, especially if breastfed infants receive some protective effects from breastmilk.

Still, the decision about whether to breastfeed or not must ultimately reside with the parents of the newborn, and not with health care practitioners or child-welfare agencies. To make this decision, parents need as much guidance as possible. There are 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?

It is important to begin with this reminder: Outside the HIV context, in practically every situation, infants are better off breastfeeding than not. The use of breastmilk substitutes is medically indicated only when the mother is unable to sustain breastfeeding or is taking pharmaceutical or recreational drugs that may be dangerous for the infant.

And if the mother has HIV? The same conclusion applies. There is as of 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 there is no hard evidence to support it. Evidence is needed that is based on actual health outcomes (illness or death), and not just blood test results.

And so prudence would suggest that until clear, scientific evidence and arguments to the contrary are presented, even HIV-positive mothers should breastfeed their infants. (New policies, of course, should be considered if and when solid evidence arrives.)

If this line of reasoning is not convincing, and one wishes to minimize the risk of HIV infection in newborns, the least-risk options are the use of expressed and heated breastmilk from the mother, or the use of breastmilk from other women obtained from carefully selected wet nurses or milk banks.

The Civil Rights of Families

The Universal Declaration of Human Rights 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 1990 Convention on the Rights of the Child is more specific, saying that governments should "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."

How do these international conventions bear on the debate about infant feeding among HIV-positive women? They raise important, if subtle, issues of what rights must be considered -- and whose -- in determining policy on this subject. What, for instance, 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, governments, 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. And sometimes, even when everyone believes they are doing what is right and warranted, the child's rights are forfeited.

When health care or child welfare workers threaten HIV-positive mothers with loss of custody if they breastfeed their infant, they violate the rights of both mothers and infants.

Such state interference flies in the face of the human rights of the family. In general, 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, after all, has great interests at stake, but few resources to be used to press for preferred outcomes.

Given the infant's powerlessness, it's sensible to use the law to help assure that the best interests of the infant are served. However, the law shouldn't be used to interfere with the mother's right to make her own decisions about how to feed her infant. From a human rights perspective, the major concern must be with protecting the woman-infant unit from outside interference.

In other words, 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 or to abstain from breastfeeding if she so chooses.

The current, prevailing view among human-rights experts 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.

The Final Analysis

In my view, the human rights of infants with regard to nutrition may be summarized in a few fundamental principles, which include the following:

• Infants have the right to be free from hunger and to enjoy the highest attainable standards of health.

• Mothers have a right to breastfeed.

• Infants have the right to be breastfed if their mothers choose to breastfeed.

• Human-rights law requires respect, protection, and facilitation by outsiders -- and particularly by the state -- of the nurturing relationship between mother and child.

• 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.

The idea that parents should be allowed to make informed decisions about their children 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.

Similarly, the human rights of infants are not suspended in the context of HIV/AIDS. This means, for example, that even babies born to HIV-positive mothers have a right to be breastfed. If any country were to prohibit HIV-positive mothers from breastfeeding, that would violate both the mothers' and the infants' human rights.

In the final analysis, it is clear that the scientific issues relating to infant feeding in the context of HIV/AIDS need further research and elaboration. It should also be recognized that infants and parents have a right to all currently available 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. And only through such informed choice can we as a society ensure compassionate, involved parenting.

George Kent, chair of the Political Science Department at the University of Hawaii in Honolulu, 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. The views expressed in this article are his own. He may be contacted by E-mail: kent@hawaii.edu. His web site is http://www2.hawaii.edu/~kent

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Also see the following articles in past issues of Mothering: "AZT Roulette," no. 90 and "Can AIDS Drugs Contribute to Prematurity?" no. 92.