Health Policy and Ethics of PAMS (Week 2)

Health policy is defined as – “authoritative decisions made within government…intended to direct or influence the actions, behaviors, or decisions of others pertaining to health and its determinants (Longest, 2010).”

Ethics is defined in various ways around the core concepts of moral rightness and related behaviors and decisions. With respect to public health policy ethics, the Public Health Leadership Society (2002) published Principles of the Ethical Practice of Public Health consisting of “12 Principles of the Ethical Practice of Public Health” and accompanying appendices. In the following, a particularly appropriate principle regarding PAMS and current public position statements of the CDC, FDA, and WHO regarding PAMS is Principle 8 –

“Public health programs and policies should incorporate a variety of approaches that anticipate and respect diverse values, beliefs, and cultures in the community.”

Statements Regarding PAMS

                The FDA rightly advises parents that there are risks of infectious disease (emphasizing HIV), chemical and pharmaceutical contaminants, and illness resulting from improper handling of milk as well as counsels to seek guidance from a healthcare provider. The next portion of the statement describes the FDA’s belief that it is not possible to safely handle and adequately screen an individual privately to ensure milk safety. The final portion of this statement refers families to HMBANA.

The CDC does not specifically address intentional sharing of milk, but does address the accidental consumption of milk that is not intended for the recipient child, again, focusing exclusively on HIV risks –

“The risk of HIV transmission from expressed breast milk consumed by another child is believed to be low because

*  In the United States, women who are HIV positive and aware of that fact are advised NOT to breastfeed    their infants

*  Chemicals present in breast milk act, together with time and cold temperatures, to destroy the HIV present in expressed breast milk

*  Transmission of HIV from single breast milk exposure has never been documented”

The WHO

Courtesy of Eats On Feets

Courtesy of Eats On Feets – Three Generations of PAMS participation.

discusses several options beyond the closed biological breastfeeding relationship-

“For those few health situations where infants cannot, or should not, be breastfed, the choice of the best alternative – expressed breast milk from an infant’s own mother, breast milk from a healthy wet-nurse or a human-milk bank, or a breast-milk substitute fed with a cup, which is a safer method than a feeding bottle and teat – depends on individual circumstances.”

Ethics of Statements

                The CDC and FDA statements fail to provide families with adequate information regarding health risks associated with PAMS (Gribble & Hausman, 2012). In the case of HIV, transmission rates in breastfeeding dyads where the parent is known to be HIV positive and in resource limited settings is less than 15% (Coovadia & Bland, 2007). Further, these statements fail to acknowledge the cultural and religious factors of milk kinship present in Islam and Orthodox Judaism that make accepting milk from a milk bank or other anonymous source a choice in violation of faith. Many families in the PAMS culture have ethical objections to hierarchy of need placed upon recipient families by HMBANA (Gribble, 2013; HMBANA, 2010). The WHO statement clearly addresses the viability of providing milk from a wet nurse (presumed to mean from the breast or through expression) in situations where resources are appropriate.

Closing Thoughts            

                Current policy statements from the CDC and FDA are inadequate in meeting the expectations of ethics associated with public health. STI screening and home pasteurization are, in fact, readily available to most families in the United States. Individuals have the right and responsibility to decide where and with whom they share breastmilk. Donors and recipients who do not currently have access to banked milk still have the right to biologically normal nutrition for their infants. Public health agencies have the vested responsibility to provide comprehensive guidance, which has not been met. These agencies have ready access to the necessary information to provide families with this information, as is evident in the provided resources from milk sharing networks.

Coovadia, H. M., & Bland, R. M. (2007). Preserving breastfeeding practice through the HIV pandemic. Tropical Medicine & International Health : TM & IH, 12(9), 1116-1133. doi:10.1111/j.1365-3156.2007.01895.x

Gribble, K. D., & Hausman, B. L. (2012). Milk sharing and formula feeding: Infant feeding risks in comparative perspective? The Australasian Medical Journal, 5(5), 275-283. doi:10.4066/AMJ.2012.1222

Gribble, K. D. (2013). Peer-to-peer milk donors’ and recipients’ experiences and perceptions of donor milk banks. Journal of Obstetric, Gynecologic, and Neonatal Nursing : JOGNN / NAACOG, 42(4), 451-461. doi:10.1111/1552-6909.12220

Introduction to Private Arrangement Milk-Sharing

An Introduction

Private Arrangement Milk Sharing – exchange of expressed breast milk, with or without formal or semi-formal arrangement, between the lactating person and another family without exchange of money, barter, or other commerce for the expressed human milk.

The above is a working definition of Private Arrangement Milk Sharing (PAMS). This practice has been referred to in other places as “Casual Milksharing”, “Informal Milksharing”, “Peer to Peer Milksharing” and “Modern Wet-Nursing”. In the media, it is frequently mistaken for Milk Selling – a practice expressly condemned by all milksharing networks. None of these other terms grasps the complexity and breadth of experiences of milksharing donors and recipients.

About Me

My name is Angie Bond MS, second year PhD student in the College of Nursing and Health Innovation at Arizona State University. My academic and professional background is Animal Sciences – Reproductive and Lactation Physiology – and I worked in the Dairy Industry for almost 10 years during and after my Master’s Degree. In that time, I became well versed in nutritional, environmental, endocrine, and production factors effecting the production and safety of milk in the United States. In 2011 I gave birth to my first daughter, and soon after became a donor and Technical Adviser and page administrator for the milk-sharing network Eats On Feets. Since beginning my PhD, I have stepped down from page administration duties and only consult on requested areas of content regarding the Resource for Informed Milk Sharing or The Four Pillars of Safe Milksharing (Walker & Armstrong, 2012) for Eats on Feets. I continue to be an advocate and supporter of informed consent and right to engage in milk-sharing for the community as a whole. Currently, I am a lecturer for the Southwest Clinical Lactation Education Program at Arizona State University and pursuing the Internationally Board Certified Lactation Consultant credential. In 2013, data collection regarding the practices of PAMS was completed. Preliminary findings from a subset of the respondents from the United States will be presented at the 2014 International Lactation Consultants Association meeting in Phoenix, Arizona.

Why PAMS?

Breast milk is the only biologically normal and complete source of nutrition for a human infant. The World Health Organization (WHO),  Surgeon General of the United States of America (Surgeon General), and the American Academy of Pediatrics (AAP) all recommend a minimum duration of exclusive breastfeeding (no other liquids or solids, except medication) for the first 6 months of an infant’s life, with appropriate complimentary foods beginning at 6 months and breastfeeding continuing for at least one year (Surgeon General, AAP) or two years (WHO), or longer if the lactating parent (generally the biological mother) and child desire it. In the United States, 16.4% of infants are breastfeeding exclusively at 6 months. In the absence of milk from a parent, infants receive commercial formula, homemade formula, or animal milks to attempt to meet the nutritional needs of the infant. Increased infant risks of suboptimal breastfeeding exclusivity and duration include hospitalization for lower respiratory tract infection, acute otitis media infection, necrotizing enterocolitis in premature infants, asthma, atopic dermatitis, sudden infant death syndrome, childhood leukemia, juvenile and adult obesity, adult hypertension, and Type II Diabetes Melitus (Ip et al., 2007). These risks are well known and accepted, and oft cited by families seeking PAMS donors.

How Does Milk-Sharing Happen?

Donors and recipients typically engage in PAMS through Facebook hosted pages dedicated to providing space for connecting. Donors are able to post their offers of milk with any information the feel is pertinent and acceptable to share via a public Facebook page on the Wall of their local chapter. The page administrator will re-post this offer to ensure that all “Likers” and “Followers” of the page will be able to see it in their News or Pages Feeds. Recipients post in the same way with details of their specific needs i.e. dairy free diet, vegetarian diet, colostrum, Kosher diet etc. Screening of donors/recipients is the exclusive responsibility of the participants and is not facilitated by milk-sharing networks. Screening may include serological testing for diseases communicable diseases,  lifestyle choices such as tobacco use, alcohol consumption, marital status, and infant health. Screening may also include formal agreements for further medical testing, letters of recommendation, letters of health for donor and child from a care provider, and reimbursement for shipping costs, or specific terms of the relationship as would be that case for surrogacy. For more details, see the Resource for Informed Breastmilk Sharing, Human Milk 4 Human Babies FAQ, or Modern Milksharing Mission Statement.

Comparative Risks of PAMS and Formula

Gribble and Hausman (2012) detail the comparative risks of providing PAMS acquired donor milk and typical preparation and use of commercial formula. While many viruses can be found in breastmilk if the lactating person is infected, few diseases transmit through breastmilk. These diseases specifically are Human Immuno Deficiency Virus (HIV), Human T-Cell Leukemia Virus (HTLV), and Cytomegalo Virus (CMV). The transmission rate of these diseases is very low, for instance HIV at less than 6%, even in repeated exposures through direct breastfeeding of infants (Coovadia et al., 2007). HTLV is inactivated by freezing, which is standard practice for expressed breast milk (Gribble and Hausman, 2012). Premature infants of CMV negative mothers are at risk for contracting this virus, however, parents of fragile infants are aware of these additional risks (Cohen et al., 2010). Rarely, as a result of poor hygiene during milk expression, salmonella spp., streptococcous B, and Listeria monocytogenes have been reported to cause infant illness. Holder Method pasteurization renders inactive all known pathogens present in breastmilk, and is the method used by the Human Milk Banking Association of North America. This method can be used in the home via single bottle pasteurizer and stove top method. Flash heating of milk will kill HIV (Isreal-Ballard et al., 2005).

Commercial powdered infant formula is not sterile. It is common knowledge for providers and infant feeding specialists that safe handling and preparation guidelines for powdered infant formula are not followed (Labiner-Wolfe et al., 2008). Among the known and common biological contaminants of powdered infant formula are Enterbacter sakazakii, Salmonella spp., Klebsiella spp., Enterobacter cloacae, Bacillus cereus, Clostridium spp., Staphylococcus aureus and Listeria monocytogenes (WHO, 2004). Exclusive of biological contaminants are concerns with proper measurement of infant formula to ensure solute load on infant kidneys does not become excessive, or that dilution does not result in hyponaturemia. Bartick and Reinhold (2011) estimate that the use of infant formula in current practice costs up to $13.5 billion USD annually and results in 911 preventable infant deaths.

Policy Statements Regarding PAMS

The United States Food and Drug Administration, AAP, and most health professionals default to the recommendation of seeking breast milk only from the Human Milk Banking Association of North America (HMBANA). This recommendation is unsound advice due to the hierarchy of need placed on recipient families, cost prohibitive nature of procuring banked milk, and insufficient supply for HMBANA to meet current needs (Sakamoto, 2010). The WHO (2003) provides the following options as safe and appropriate depending on individual circumstances:

Milk from own mother by breastfeeding,

Milk from own mother, expressed,

Milk from a wet-nurse [commonly interpreted to include PAMS], or

Milk from a milk bank, or

Breastmilk substitute fed by cup

In a 2010 interview available by podcast with Dr. Chelsea Lutter, Regional Advisor on Food and Nutrition for the Pan American Health Organization of WHO, Dr. Lutter explains that ““We don’t have a position on [PAMS – specifically addressing a question about Eats On Feets]. We focus our efforts on what we consider are the most pressing public health concerns. This has not made it to the top of the list.”

PAMS Legislation

In late 2013, Counsel woman Lampitt of New Jersey proposed a bill that would require a public education campaign concerning the specific dangers of PAMS. At present, this bill did not survive to be voted on by the New Jersey Senate. This is the first attempt to legislate the practice of PAMS.

Closing Thoughts

The specific risks of PAMS are not yet known. The only published work concerning the practice regards participant perceptions of PAMS and milk banks, indicating that many participants object on moral and ethical grounds, in addition to economic concerns, about participating in milk banking systems (Gribble, 2013). Additionally, and very importantly, this research also indicated that the majority of participants would not have been considered as recipients OR as donors within the milk banking system. This indicates that the population served by PAMS is distinct from that served by organizations such as HMBANA. In light of the lack of concrete evidence regarding the practices of PAMS participants, it is premature to legislate such a practice.

References

Bartick, M., & Reinhold, A. (2010). The burden of suboptimal breastfeeding in the United States: A pediatric cost analysis. Pediatrics, 125(5), e1048-e1056. doi:10.1542/peds.2009-1616

Centers for Disease Control and Prevention. (2013). Breastfeeding Report Card. Retrieved from http://www.cdc.gov/breastfeeding/data/reportcard.htm

Coovadia H, Rollins N, Bland R, Little K, Coutsoudis A, Bennish ML, Newell M-L. (2007). Mother to-child transmission of HIV-1 infection during exclusive breastfeeding in the first 6 months of life: An intervention cohort study. Lancet.369(9567):1107 – 1116.

Cohen RS, Xiong SC, Sakamoto P. (2010). Retrospective review of serological testing of potential human milk donors. Arch Dis Child Fetal Neonatal Ed. 95(2):F118-120.

Israel-Ballard K, Chantry C, Dewey K, Lonnerdal B, Sheppard H, Donovan R, Carlson J, Sage A, Abrams B. (2005). Viral, nutritional, and bacterial safety of flash-heatedand pretoria-pasteurized breast milk to prevent mother-to-child transmission of HIV in resource-poor countries: a pilot study. J Acquir Immune Defic Syndr. 40(2):175-181.

Gribble, K. D., & Hausman, B. L. (2012). Milk sharing and formula feeding: Infant feeding risks in comparative perspective? The Australasian Medical Journal, 5(5), 275-283. doi:10.4066/AMJ.2012.1222

Gribble, K. D. (2013). Peer‐to‐Peer milk donors’ and recipients’ experiences and perceptions of donor milk banks. Journal of Obstetric, Gynecologic, & Neonatal Nursing, 42(4), 451-461. doi:10.1111/1552-6909.12220

Ip S, Chung M, Raman G, Chew P, Magula N, DeVine D, Trikalinos T, Lau J. Breastfeeding and Maternal and Infant Health Outcomes in Developed Countries. Evidence Report/Technology
Assessment No. 153 (Prepared by Tufts-New England Medical Center Evidence-based Practice Center, under Contract No. 290-02-0022). AHRQ Publication No. 07-E007. Rockville, MD:
Agency for Healthcare Research and Quality. April 2007.

Sakamoto, P. (2010). Human milk banking association of north America. Brief for the United States Food and Drug Administration.

Walker, S. & Armstrong, M.  (2012). The four pillars of safe milk sharing.  Midwifery Today. Spring 2012.  34-36.

WHO, FAO. (2004). Enterobacter sakazakii and other microorganisms in powdered infant formula.Geneva: WHO.

WHO/UNICEF. (2003) Global strategy for infant and young child feeding. Geneva: WHO.