Stemple, Karegeya y Gruskin HR, Gender and Infectiour Desease 2016 Asignada

Human Rights, Gender, and Infectious Disease: From HIV/AIDS
to Ebola
Lara Stemple, Portia Karegeya, Sofia Gruskin
Human Rights Quarterly, Volume 38, Number 4, November 2016, pp. 993-1021
(Article)
Published by Johns Hopkins University Press

DOI: https://doi.org/10.1353/hrq.2016.0054
For additional information about this article

https://muse.jhu.edu/article/636567
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HUMAN RIGHTS QUARTERLY
Human Rights, Gender, and Infectious

Disease: From HIV/AIDS to Ebola
Lara Stemple,* Portia Karegeya** & Sofia Gruskin***
ABSTRACT
Two global health crises, HIV/AIDS and Ebola, have drawn legal and political
attention to the fact that infectious disease does not affect all citizens of the
globe equally. Of the many factors operating to render some more vulner-
able than others, human rights and gender equality play vital roles, as the
international community learned in response to HIV/AIDS. An examination
of the recent Ebola outbreak demonstrates once again that the promotion
and protection of human rights, inclusive of a gender perspective, should
* Lara Stemple is the Director of Graduate Studies at UCLA School of Law, where she over-
sees the law school’s LL.M. (masters) and S.J.D. (doctoral) degree programs and directs the
Health and Human Rights Law Project. Stemple teaches and writes in the areas of human
rights, global health, gender, sexuality, HIV/AIDS, and incarceration. She is also the Deputy
Codirector of the UC Global Health Institute’s Center of Expertise on Women’s Health and
Empowerment. Prior to joining UCLA, Stemple worked as an advocate; she drafted legisla-
tion that was signed into law, lobbied members of Congress and United Nations delegates,
and testified before legislative bodies.
** Portia Karegeya is a 2015 graduate of UCLA Law, where she earned an LL.M. degree with
honors and received the UCLA-Sonke Health and Human Rights Fellowship. Prior to this,
Karegeya earned a Master of Laws from McGill University an LL.B. from the University of
Cape Town. A lawyer born in Rwanda, raised in Uganda, and educated in South Africa,
Canada, and the US. Karegeya’s research interests span the globe, and have focused on
human rights, gender, global health, sexual violence, access to affordable medicines, and
freedom of expression and information. She is currently a researcher for the Global Freedom
of Expression and Information at Columbia University and works with the Health and Hu-
man Rights Law Project at UCLA Law.
*** Sofia Gruskin directs the Program on Global Health & Human Rights at the University of
Southern California (USC) Institute for Global Health and holds appointments as Professor
of Preventive Medicine at the Keck School of Medicine and as Professor of Law and Preven-
tive Medicine at the Gould School of Law. She is also adjunct professor in the Department
of Global Health and Population at the T.H. Chan School of Public Health at Harvard
University. Her work, which ranges from global policy to the grassroots level, has been
instrumental in developing the conceptual, methodological and empirical links between
health and human rights.
Human Rights Quarterly 38 (2016) 993–1021 © 2016 by Johns Hopkins University Press
994 HUMAN RIGHTS QUARTERLY Vol. 38
underpin all interventions from the outset, so as to more effectively respond

to Ebola and all public health crises.
I. INTRODUCTION
In September 2014, the UN Security Council responded to a health crisis for

only the second time in its history. It passed a resolution declaring that “the
unprecedented extent of the Ebola outbreak in Africa constitutes a threat to
international peace and security.”1 The first health crisis addressed by the
Council was HIV/AIDS.2
What do these two international crises have in common? The answer is
complex, but one fact resonates clearly: HIV/AIDS and Ebola do not affect
all citizens of the globe equally. Of the many factors operating to render
some more vulnerable than others, this article examines the role that rights
and gender play. We look at gender mainly, though certainly not exclusively,
as it affects women.
In terms of recent history, this article posits that the international response
to HIV, while attentive to rights concerns from early on, slowly but steadily
took gender into account. Ultimately, the global response both utilized and
expanded international human rights norms concerning gender equality and
health in groundbreaking ways. This legacy informed the response to Ebola
only to a limited extent, and we argue that more can be done to ensure
that the gender equality lessons of HIV are fully incorporated in current and
future responses to Ebola and to infectious disease more broadly.
Moreover, we assert that the gender-related lessons coming out of Ebola
reinforce the imperative for a human rights-based response to public health
crises. Not only is there a now well established basis for it in international
law, but the specifics of Ebola illustrate why attention to human rights—both
within health systems and more broadly—is critically important.
Grounded in the realities of the hardest hit countries, we argue that
specific gender-based inequities put women at risk for Ebola and its con-
sequences. Likewise gender norms harm men in particular ways that we
touch upon, and we note that the imperative to address this is unfortunately
underdeveloped in human rights instruments.3
1. SC Res. 2177, U.N. SC, 7268th Meeting, U.N. Doc. S/RES/2177 (2014).
2. Lawrence O. Gostin & Eric A. Friedman, Ebola: A Crisis in Global Health Leadership,
384 The Lancet 1323 (2014), available at http://www.thelancet.com/pdfs/journals/lancet/
PIIS0140-6736(14)61791-8.pdf.
3. Lara Stemple, Human Rights, Sex, and Gender: Limits in Theory and Practice, 31 Pace
L. Rev. 3, 824–836 (2011), available at http://digitalcommons.pace.edu/cgi/viewcontent.
cgi?article=1788&context=plr.
2016 Human Rights, Gender, and Infectious Disease 995
II. BACKGROUND
Human rights law guarantees equality between women and men, and to
realize this it (eventually) emphasized the human rights of women.4 The
human rights cannon also includes a robust set of norms related to the
human right to health,5 which is fundamental to the rights of women; one
cannot be fully realized without the other. This intersection has been well
mined by those working on topics such as sexual violence and reproductive
health and rights. But the work on HIV may be the most salient to Ebola
and infectious disease.
Looking back at the decades-long fight against HIV, a maxim about the
gender of the vulnerable eventually took hold: “the HIV/AIDS pandemic has
a woman’s face.”6 Most people living with HIV live in Sub-Saharan Africa,
and at times, women there were twice as likely to be HIV positive as men.
During the Ebola outbreak, headlines asked a related question:7 “Why
Are So Many Women Dying from Ebola?”8 Clearly, women in Ebola-hit
countries do not enjoy the promise of equality called for under human rights
law: UNDP ranks Liberia, Guinea, and Sierra Leone 175th, 179th, and 183rd
among 187 countries in its Gender Equality Index.9
The most recent WHO Ebola Situation Report provides sex-disaggregated
data and indicates that slightly more women were infected than men in
Guinea and Sierra Leone (the country with more cases than the other two
combined); slightly more men were infected in Liberia (Figure 1). Liberia
reported that 65 percent of those infected at the beginning of the outbreak
were women.10 As of yet, no biological sex difference concerning Ebola
4. Convention on the Elimination of All Forms of Discrimination Against Women, adopted

18 Dec. 1979, G.A. Res. 34/180, U.N. GAOR, 34th Sess., U.N. Doc. A/34/46 (1980),
1249 U.N.T.S. 13 (entered into force 3 Sept. 1981).
5. CESCR General Comment No. 14: The Right to the Highest Attainable Standard of Health
(Art. 12), Committee on Economic, Social and Cultural Rights, 22nd Sess., U.N. Doc.
E/C.12/2000/4 (2000).
6. Carol Bellamy, Globalization and Infectious Diseases in Women, 10 Emerging Infectious
Diseases 1895, 2022, 2024 (2004), available at http://www.ncbi.nlm.nih.gov/pmc/articles/
PMC3329001/pdf/04-0485.pdf.
7. Doreen Akiyo Yomoah, The “Gendered Face” of Ebola, Women’s Media Center, 17 Sept.
2014, available at http://www.womensmediacenter.com/feature/entry/the-gendered-face-
of-ebola; Caelainn Hogan, Ebola Striking Women more Frequently than Men, Wash.
Post, 14 Aug. 2014, available at https://www.washingtonpost.com/national/health-
science/2014/08/14/3e08d0c8-2312-11e4-8593-da634b334390_story.html.
8. Lauren Wolfe, Why are so Many Women Dying from Ebola?, Foreign Pol’y, 20 Aug.
2014, available at http://foreignpolicy.
9. United Nations Development Programme (UNDP), Human Development Report: Gender Inequality
Index (2014) available at http://hdr.undp.org/en/content/table-4-gender-inequality-index.
10. Ebola Deeply, Ebola and Women: Julia Duncan-Cassell, Liberia’s Minister of Gender,
Ministry Of Gender, Children, & Social Protection (31 Oct. 2014), available at http://www.
mogcsp.mogdliberia.com/index.php/media-center/175-ebola-women-julia-duncan-cas-
sell-liberia-s-minister-of-gender; Sanjana J. Ravi & Eric M. Gauldin, Issue Brief: Sociocul-
tural Dimensions of the Ebola Virus Disease Outbreak in Liberia, Biosecurity & Bioterrorism
1 (2014), available at http://online.liebertpub.com/doi/pdf/10.1089/bsp.2014.1002.
Figure 1. Total confirmed cases of Ebola from the World Health Organization
(WHO) Ebola Situation Report, May 2016.
vulnerability has been established.11 In the meantime we offer a preliminary

look at gender’s powerful effect—not only in terms of who was infected but
also the gendered consequences of the disease more broadly—as well as
the human rights obligations to address it.
It is now well established that gender roles in communities, families,
and healthcare settings influence the vulnerability to and impact of disease.
Gender norms impact both women and men, influencing who comes into
contact with infectious agents, who faces unmet healthcare needs, and
who provides care to the sick and dying.12 In addition, ideas about gender
11. Clara Menéndez et al, Ebola Crisis: The Unequal Impact on Women and Children’s
Health, 3 The Lancet Global Health e130 (2015), available at http://www.thelancet.com/
journals/langlo/article/PIIS2214-109X%2815%2970009-4/fulltext?rss=yes.
12. World Health Organization (WHO), Addressing Sex and Gender in Epidemic-prone Infectious
Diseases 3-4 (2007) [hereinafter WHO 2007] available at http://www.who.int/csr/resources/
publications/SexGenderInfectDis.pdf.
influence employment, educational, and financial opportunities available

based on sex, as well as the relationships between and among women and
men. Numerous cultural and health-related topics such as maternal and
reproductive care, FGM, and gender-based violence are of course replete
with gender implications.
Against the backdrop of gender’s powerful influence, many HIV activists
and scholars turned to binding and nonbinding human rights instruments
to provide a coherent normative framework to address the gender dimen-
sions of HIV.13 For women, the deployment of rights-based language was
ultimately a success (at least on paper), influencing the analysis of and ap-
proach to the disease at the international policy level. For instance one UN
expert group concluded that the spread of HIV and its detrimental effect
on families, communities, and countries were borne out of women’s lack
of equal rights at all levels.14
To be sure, women’s rights were not always central to the HIV agenda,
nor were the ways in which gender norms put women at risk immediately
apparent. During the early stages of the HIV epidemic, particularly in
wealthier countries, it was understood predominantly as a gay men’s health
concern. Other public health responses were limited to populations engaged
in what were termed “high-risk behaviors” such as a sex work and injecting
drug use, without attention to the gender dimensions of these behaviors for
women or for men. Perhaps the signature prevention message was, “use
a condom.” But such simplistic messages failed to elucidate an important
gender dimension of heterosexual sex: women do not use condoms, they
negotiate their use.
It was not until the 1990s that links between gender, human rights, and
HIV were expressly articulated by the international community. The 2001
UN Declaration of Commitment on HIV/AIDS then helped draw political
attention to the gender and rights dimensions of topics such as women’s
vulnerability to infection, the impact of HIV on women as caretakers, the
particular needs of pregnant women, the implications of sexual behavior,
the economic impact of disease on women and families, and the need to
address sociopolitical realities that diminish a woman’s ability to realize
her right to health.15
13. Nkoli I. Aniekwu, Gender and Human Rights Dimensions of HIV/AIDS in Nigeria, 6 Afr. J.
Reproductive Health 30, 33 (2002), available at http://www.bioline.org.br/request?rh02032;
Charles D. Whelan, Human Rights Approaches to an Expanded Response to Address
Women’s Vulnerability to HIV/AIDS, 3 Health & Hum. Rts 1, 21–23 (1998), available at
http://www.jstor.org/stable/4065283?seq=1#page_scan_tab_contents.
14. Bellamy, supra note 6, at 2023–24.
15. Report of the International Conference on Population and Development, U.N. GA, U.N.
Doc. A/Conf. 171/13 (1994) [hereinafter, Cairo Platform]; United Nations, Report of
the Fourth World Conference on Women, U.N. Doc. A/Conf. 177/20, U.N. Sales No.
96.IV.13 (1995) [hereinafter, Beijing Platform].
None of this is to say that the battle against HIV for women has been
won. Nor have the gender dimensions of HIV been universally well ad-
dressed- far from it. While total deaths have declined and new infections
remain nearly static, the disease continues to wreak havoc on many com-
munities.16 HIV remains a leading cause of death for women of reproductive
age worldwide,17 and in sub-Saharan Africa women account for 56 percent
of new infections among adults.18
Men drink more alcohol, which has been shown to fuel sexual disin-
hibition,19 get tested for HIV less often, and visit health services and access
treatment in lower numbers than women. In some communities, men who
hold traditional views about masculinity are more likely to test positive for
STIs,20 to have negative attitudes about condom use, and to view sexual
relationships as adversarial.21 As HIV advocates and scholars eventually
made clear, international human rights and public health efforts too often
ignore the way gender norms harm men.22 And, human rights language that
treats men only as holders of privilege misses men who, like many women,
are disempowered by intersecting forms of discrimination (race, ethnicity,
nationality, class, sexuality, disability, and so on). Men who have sex with
men remain largely neglected in UN instruments addressing HIV, whereas
the notion that inequality drives women’s vulnerability to HIV is no longer
vociferously contested by states.23
In short, the global conversation around gender, human rights, and HIV
has been long, deep, contentious, and fruitful—if still incomplete. The insights
gleaned about what to do, and what not to do, are acutely relevant to the
response to Ebola and to other public health crises. And as illustrated recently
with the Zika virus, these insights remain insufficiently taken into account.
16. UNAIDS, Global Aids Update 2016 (2016), available at http://www.unaids.org/sites/default/

files/media_asset/global-AIDS-update-2016_en.pdf.
17. UNAIDS, Women Out Loud: How Women Living with HIV Will Help the World End AIDS
11 (2011), available at http://www.unaids.org/sites/default/files/en/media/unaids/conten-
tassets/documents/unaidspublication/2012/20121211_Women_Out_Loud_en.pdf.
18. UNAIDS, supra note 16.
19. WHO, World Health Report 2002: Reducing Risks, Promoting Healthy Life (2002) available
at http://www.who.int/whr/2002/en/whr02_en.pdf?ua=1 [hereinafter WHO 2002]; Olive
Shisana & Leickness Simbayi, Nelson Mandela-HSRC study of HIV/AIDS: South African national
HIV prevalence, behavioral risks, and mass media household survey (2002).
20. Will H. Courtenay, Focus on Men’s Health, 4 Blue Shield of California Positive Personal
Health 1 (1997).
21. Seth M. Noar & Patricia J. Morokoff, The Relationship Between Masculinity Ideology,
Condom Attitudes, and Condom Use Stage of Change: a Structural Equation Modeling
Approach, 1 Int’l J. Men’s Health 43 (2002), available at http://www.mensstudies.info/
OJS/index.php/IJMH/article/view/397/pdf_69.
22. Dean Peacock et al., Men, HIV/AIDS, and Human Rights, 51 J. Acquired Immune Deficiency
Syndromes Suppl S119 (2009), available at http://www.ncbi.nlm.nih.gov/pmc/articles/
PMC2853958/pdf/nihms173256.pdf.
23. Lara Stemple, Human Rights, Sex, and Gender: Limits in Theory and Practice, 31 Pace
Law Review 824 (2011), available at http://digitalcommons.pace.edu/cgi/viewcontent.
cgi?article=1788&context=plr.
The spread of the Zika virus,24 which came on the heels of the Ebola
outbreak,25 sheds light on how women’s lack of access to contraception and
abortion services can still hamper an effective, rights-respecting response to
disease. Because the mosquito-borne virus can cause birth defects, govern-
ments ineptly advised women to simply postpone becoming pregnant. 26 In
response, advocates swiftly pointed out that this is easier said than done in
contexts where gender equality is not the norm and women lack access to
sex education, contraception, and safe abortion: as one example, more than
half of all pregnancies in the hardest hit country, Brazil, are unplanned.27
Because the disease can also be sexually transmitted,28 government messag-
ing around avoiding sex harkens back to ineffective abstinence programming
in response to HIV.29 The parallels are striking. Even as advocates utilize the
Zika response to press for women’s sexual and reproductive rights,30 many
of the broader gender and human rights issues raised below continue to be
ignored in the Zika context. While Ebola serves as our illustrative example,
we hope this paper will shed light on lessons to be learned from HIV that
can also inform plans to address Zika and other public health crises going
forward.
24. Centers for Disease Control and Prevention, Areas With Zika, available at http://www.
cdc.gov/zika/geo/; Pan American Health Organization, WHO, Zika–Epidemiological
Update (30 Jun., 2016), available at http://reliefweb.int/sites/reliefweb.int/files/resources/
index_18.pdf.
25. WHO Expects Zika Virus to Spread Through Americas except Canada and Chile, Deutsche
Welle, 25 Jan., 2016, available at http://www.dw.com/en/who-expects-zika-virus-to-
spread-through-americas-except-canada-and-chile/a-19002259?maca=en-rss_top_news-
13961-xml-mrss; However, in the past week, Canada reported 143 travel-related Zika
cases detected in 2015 and 2016 (as of 6 July) to PAHO/WHO. See http://reliefweb.int/
report/world/epidemiological-update-zika-virus-infection-14-jul-2016.
26. Secretariat of Health Care, Ministry of Health, Protocolo De Atenção À Saúde E Resposta
À Ocorrência De Microcefalia (Protocol Attention to Health and Response to the Occur-
rence of Microcephaly), available at http://combateaedes.saude.gov.br/images/sala-de-
situacao/04-04_protocolo-SAS.pdf; Sarah Boseley, Zika Emergency Pushes Women
to Challenge Brazil’s Abortion Law, The Guardian, 19 July, available at https://www.
theguardian.com/global-development/2016/jul/19/zika-emergency-pushes-women-to-
challenge-brazil-abortion-law.
27. Paige Baum et al, Ensuring a Rights-Based Health Sector Response to Women Affected
by Zika, 32 Cad. Saúde Pública 5 (3 June 2016), available at http://www.scielo.br/scielo.
php?script=sci_arttext&pid=S0102-311X2016000500605&lng=en&nrm=iso&tlng=en;
Mónica Roa, Zika Virus Outbreak: Reproductive Health and Rights in Latin America,
843 The Lancet 10021 (2016), available at http://www.thelancet.com/journals/lancet/
article/PIIS0140-6736(16)00331-7/fulltext?rss%3Dyes;
28. Sexual transmission of Zika is still being explored. See CDC, Zika and Sexual Transmis-
sion, available at http://www.cdc.gov/zika/transmission/sexual-transmission.html.
29. Susana T. Fried & Debra J. Liebowitz, What the Solution Isn’t: The Parallel of the Zika
and HIV Viruses for Women, The Lancet Global Health Blog, 16 Feb. 2016, available at
http://globalhealth.thelancet.com/2016/02/16/what-solution-isnt-parallel-zika-and-hiv-
viruses-women.
30. Boseley, supra note 26.
We now turn to concrete examples from the three most Ebola-affected

countries, Guinea, Liberia, and Sierra Leone, to look closely at the over-
sights related to gender and human rights. Because we learned from HIV
that engagement both within health systems and beyond them is vital, we
group our examples by (1) personal and community level contexts (caregiv-
ing, sexual transmission, FGM, burial practices, and gender-based violence)
and (2) public health system practices (maternal and reproductive care,
AIDS treatment and other health services, and issues concerning healthcare
workers). We also look at crosscutting cultural and economic impacts and
conclude with imperatives for moving forward.
III. PERSONAL & COMMUNITY LEVEL CONTEXTS
A. The Caregiving Burden at Home
The social expectation that it is women who serve as the caretakers of fami-
lies contributes enormously to the disproportionate impact that both HIV
and Ebola have upon women.31 Throughout the world, caregiving remains
derided as “women’s work;” it is lower in status and often unpaid, in stark
contrast to men’s traditional duty to act as paid breadwinner.32 Yet even a
woman employed outside her home is often still expected to provide the care
when a family member falls ill. Such assumptions comprise a powerful norm,
deeply entrenched among the general population and policymakers alike.33
In the context of widespread and potentially fatal diseases, women’s
burden grows.34 Women account for two-thirds of all caregivers of people
living with HIV/AIDS in Africa.35 Women also care for those stricken with
Ebola, which can be not only stressful and laborious, but dangerous. Contact
with the bodily fluids of sick family members emerged as a significant factor
31. Aniekwu, supra note 13, at 31.

32. Dean Peacock & Mark Weston, Men, the Care Economy and HIV-AIDS: Structure,
Political Will and Gender Equality, U.N. Division for the Advancement of Women Ex-
pert Group Meeting on “Equal sharing of Responsibilities Between Women and men,
Including Care-Giving in the Context of HIV/AIDS,” at 6, U.N. Doc. EGM/ESOR/2008/
EP.9 (2008), available at http://www.un.org/womenwatch/daw/egm/equalsharing/EGM-
ESOR-2008-EP-9-%20Dean%20Peacock-Updated.pdf.
33. Id.
34. The International Center for Research on Women (ICRW), Expanding the Care Continuum for
HIV/AIDS: Bringing Carers into Focus 5 (2004), available at http://www.icrw.org/sites/
default/files/publications/Expanding-the-Care-Continuum-for-HIVAIDS.pdf [hereinafter
Expanding the Care Continuum for HIV/AIDS].
35. Division of Advancement of Women, Caregiving in the Context of HIV/AIDS, Joint United
Nations Programme on HIV/AIDS (UNAIDS), Expert Group Meeting, Care-Giving in the
Context of HIV/AIDS, , U.N. Doc. EGM/ESOR/2008/BP.4 (2008), at 2–3.
in infections reported among women.36 One report suggests that gendered

caregiving expectations—as well as the overall devaluing of women—are
so entrenched in affected communities that women were sent in to care for
those sick with Ebola in order to protect men from infection.37
The gender dimensions of care have been addressed in UN treaties,
declarations, and conference documents. As far back as the 1970s, CEDAW
sounded a general call for states to promote the equal sharing of responsibili-
ties between women and men and to challenge cultural patterns that lead to
stereotyped gender roles.38 Later, the impact of HIV inspired more specific
language aimed at examining the economic impact of women’s caregiving,39
including the consequences that HIV/AIDS care has upon women’s ability
to support their families.40
As was also learned in the context of HIV, the consequences of caring for
the sick are borne not only by adult women in many societies, but also by
girls, some of whom abandon their education to care for sick loved ones.41
It is also likely the case, based on experience with HIV,42 that children or-
phaned by Ebola are now disproportionately cared for by women. Indeed,
UN Women Sierra Leone identified taking in orphans by women as a gender
pattern that ought to be closely monitored.43 Approximately 16,600 children
lost one or both parents to the disease, and more than 97 percent of these
children are now cared for by other family members.44
The multiplying pressures brought by childcare and care for the sick
and dying can have significant implications for the caregivers’ own wellbe-
ing.45 The psychological challenges faced by those providing care in grim
36. Jaramenajara & Joseph Joskam, Ebola and Our Caregivers, State House Blog: The Republic
of Sierra Leone (n.d.), available at http://www.statehouse.gov.sl/index.php/state-house-
blog/1047-ebola-and-our-caregivers.
37. “For example, during a recent outbreak in the Congo in October 2003, an international
investigator asked a group of men how they avoided contracting EHF, and they responded
that they made sure that women cared for the sick—thus protecting males from infec-
tion.” WHO 2007, supra note 12, at 29.
38. CEDAW, supra note 4, Opening Statement.
39. United Nations, Declaration of Commitment on HIV/AIDS ¶ 68 (2001), available at http://
www.unaids.org/sites/default/files/sub_landing/files/aidsdeclaration_en.pdf.
40. Beijing Platform, supra note 15.
41. Peacock & Weston, supra note 32, at 8.
42. UNICEF, Africa’s Orphaned Generations 22 (2003), available at http://www.unicef.org/
sowc06/pdfs/africas_orphans.pdf.
43. UN Women, End Ebola: A UN Women WCARO Special Edition 2 (2014), available at http://
www.unwomenwestandcentralafrica.com/uploads/2/0/3/3/20331433/ebola_special_edi-
tion_unwomenwcaro_sept2014.pdf.
44. UNICEF, More than 16,000 Children Lost Parents or Caregivers to Ebola: Many are
Taken in by the Communities: UNICEF (2015), available at http://www.unicef.org/media/
media_79742.html; Karen Weintraub, Finding Homes for Ebola’s Orphans, National Geo-
graphic, 3 Feb. 2015, available at http://news.nationalgeographic.com/2015/01/150203-
ebola-virus-outbreak-epidemic-sierra-leone-orphans/.
circumstances can be particularly acute,46 and a lack of training and support

serve as exacerbating factors.47
When the woman holding a family together falls ill, who cares for the
caregiver? Often other women, usually female relatives, will care for sick
women if they are willing and able.48 Men generally play an insufficient
role in caring for people living with HIV/AIDS.49 In some cases, they have
had to, for example when large cohorts of female caregivers have died.50
In other cases, attempts at greater equity in caregiving have been made. In
Malawi for example, one program required that men comprise at least 40
percent of home-based care volunteers.51
Since the call for greater male involvement first appeared in international
conference documents two decades ago,52 a handful of human rights and
HIV organizations have undertaken sustained work with men to advance
gender equality in the home and elsewhere. More recently, advocates have
also begun to emphasize the notion that family involvement benefits men
themselves.53 Though international human rights instruments have yet to catch
up, an expanding gender critique finds that regressive norms that exclude
men from family life can deprive men of valuable human connection.54 An
expanded role for men in care and family life has relevance for HIV, Ebola,
and other infectious diseases.
B. Sexual Transmission
Disease exposure during sexual intercourse implicates questions of gender,

sexuality, and relational power, whether among heterosexual or same-sex
partners. In the case of HIV, women are physiologically more likely to
contract the disease from male partners than men are to contract it from
46. Expanding the Care Continuum for HIV/AIDS, supra note 34, at 14–15.
47. Catherine Campbell & C. Foulis, Creating Contexts for Effective Home-Based Care of
People Living With HIV/AIDS, 27 Curationis 5, 8 (Aug. 2004), available at http://eprints.
lse.ac.uk/340/1/Item_3_-_Campbell.pdf.
48. Expanding the Care Continuum for HIV/AIDS, supra note 34, at 14–15.
50. Walter Kipp et al., Family Caregiving to AIDS Patients: The Role of Gender in Caregiver
Burden in Uganda, 7 J. Int’l Women’s Stud. 2 (2006), available at http://vc.bridgew.edu/
cgi/viewcontent.cgi?article=1458&context=jiws.
51. Exnevia Gomo, VSO, RAISA, Increasing Male Involvement in Home Based Care to Reduce the
Burden of Care on Women and Girls in Southern Africa (2008).
52. Cairo Platform, supra note 15.
53 Sonke Gender Justice, So We are ATM Fathers: A Study of Absent Fathers in Johannesburg,
South Africa, available at https://www.uj.ac.za/faculties/humanities/csda/Documents/
MenCare%20Absent%20Father%208pager%20v4%20final.pdf.
54. MenCare, State of the World’s Fathers (2015), available at http://sowf.s3.amazonaws.com/
wp-content/uploads/2015/06/08181421/State-of-the-Worlds-Fathers_23June2015.pdf.
women.55 For men who have sex with men, receptive partners are also more
vulnerable to HIV exposure.56
The landscape for Ebola transmission is less clear.57 Transmission from
a convalescent patient has not been documented, but because the virus
remains in semen for as long as nine months, sexual transmission cannot be
ruled out as of yet.58 The presence of the Ebola virus in vaginal secretions
appears to be much weaker, which may mean that partners of men are more
vulnerable than partners of women, should transmission be possible. WHO
calls for more research and currently advises male Ebola survivors to get
semen testing three months after the onset of disease, and abstain from all
types of sex or use condoms until they have twice tested negative.59
Of course, one major lesson from HIV has been that gender inequal-
ity impedes women’s ability to insist on safer sex practices such as regular
condom use.60 Such straightforward directives are, in reality, complicated
by women’s economic dependence on male partners, the possibility of
violence, and unequal power dynamics between women and men.61 Hu-
man rights instruments both acknowledge this context and obligate states
to ensure that women and girls have access to sexual health information,
education, and services.62
For gay men and men who have sex with men (MSM), progress in hu-
man rights instruments has been slow going. At the UN level, governments
have generally refused to acknowledge the existence (let alone the rights) of
MSM in the context of HIV-related instruments, and barely relented in the
political declarations of 2011 and 2016 by noting only that states should
consider MSM as a population at disproportionate risk.63 Also missing from
55. Gita Ramjee & Brodie Daniels, Women and HIV in Sub-Saharan Africa, 10 AIDS Res.
& Therapy (2013), available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3874682/.
56. Kenneth H. Mayer, et al., Overcoming Biological, Behavioral and Structural Vulnerabili-
ties: New Directions in Research to Decrease HIV Transmission in Men Who Have Sex
with Men, 63 J. Acquired Immune Deficiency Syndromes, at S161 (2013), available at http://
www.ncbi.nlm.nih.gov/pmc/articles/PMC3740716/pdf/nihms485411.pdf.
57. Sheri Fink, Signs Ebola Spreads in Sex Prompt a C.D.C. Warning, N.Y. Times, 19 Apr.
2015, available at http://www.nytimes.com/2015/04/20/world/africa/signs-ebola-spreads-
in-sex-prompt-a-cdc-warning.html?_r=0.
58. Centers for Disease Control and Prevention, Q&A on Transmission (2015), available at
http://www.cdc.gov/vhf/ebola/transmission/qas.html; WHO, Sexual and Reproductive
Health: Interim Advice on the Sexual Transmission of the Ebola Virus Disease (21 Jan.
2016), available at http://www.who.int/reproductivehealth/topics/rtis/ebola-virus-semen/
en/.
59. Id.
60. Aniekwu, supra note 13, at 32.
61. Abigail Harrison et al., Re-focusing the Gender Lens: Caregiving Women, Family Roles
and HIV/AIDS Vulnerability in Lesotho, 18 AIDS & Behavior 595 (2014).
62. CEDAW General Recommendation No. 24, U.N. CEDAW, 20th Sess., ¶ 18, U.N. Doc.
A/54/38/Rev.1, ch. I (1999).
63. Political Declaration on HIV and AIDS: Intensifying Our Efforts to Eliminate HIV and
AIDS, U.N. GAOR, 65th Sess., Annex, Agenda Item 10, ¶ 29, U.N. Doc. A/Res/65/277
(2011).
the instruments but well articulated by NGOs working on masculinity, are

the harmful gender norms driving many men’s sexual risk taking. These in-
clude the assumption that men’s sex drive is uncontrollable or that having
multiple partners demonstrates prowess and power.64
Reports on the ground indicate a great deal of confusion around the
sexual transmission of Ebola.65 Responding to this confusion and account-
ing for gender dynamics in safer sex messaging is important, particularly in
a context where gender and sexual orientation discrimination continues to
plays a significant role.66
C. Female Genital Mutilation (FGM)
The practice of female genital mutilation (FGM) has remained stubbornly per-
sistent in Sierra Leone and Guinea (90 percent67 and 96 percent68 prevalence,
respectively). In Sierra Leone, international human rights organizations69
together with local NGOs and policymakers have tried various measures
to reduce its prevalence or delay the practice until adulthood.70 Yet it was
the Ebola outbreak that finally led the government to order its halt.71 The
64. Gary Barker & Christine Ricardo, World Bank Social Development Papers, Young Men and the
Construction of Masculinity in Sub-Saharan Africa: Implications for HIV/AIDS, Conflict, and
Violence 26, vii (2005), available at http://promundo.org.br/wp-content/uploads/2015/01/
Young-Men-and-the-Construction-of-Masculinity-in-Sub-Saharan-Africa-Implications-for-
HIV-AIDS-Conflict-and-Violence.pdf.
65. Skype Interview with Amy Greenbank, Women’s Protection and Empowerment Coordi-
nator, International Rescue Committee (5 May 2015).
66. Mardia Stone, Ebola: The Overlooked Sexually Transmitted Disease, The World Post,
26 May 2015, available at http://www.huffingtonpost.com/mardia-stone/ebola-the-
overlooked-sexu_b_7428342.html.
67. 28 Too Many, Country Profile: FGM in Sierra Leone 9 (2014), available at http://www.
refworld.org/pdfid/54bce6334.pdf.
68. UN Population Fund, Female Genital Mutilation/Cutting Country Profile: Guinea (22
Oct. 2013), available at http://www.refworld.org/type,COUNTRYPROF,UNFPA,GIN,52
7a04be4,0.html.
69. Amnesty Int’l, Communities in Sierra Leone Turn Their Backs on Female Genital Mu-
tilation (22 July 2014), available at https://www.amnesty.org/en/articles/news/2014/07/
communities-sierra-leone-turn-their-backs-female-genita l-mutilation/.
70. The Child Right Act, No. 43 (2007), available at http://www.sierra-leone.org/Laws/2007-
7p.pdf; Female Genital Mutilation/Cutting Country Profile: Guinea, U.N. Population Fund
(22 Oct. 2013), available at http://www.refworld.org/type,COUNTRYPROF,UNFPA,GIN
,527a04be4,0.html.
71. Nina Devries, Ebola Fears Bring Female Genital Mutilation to Near Halt in Sierra Leone, Al-
jazeera America, 4 Dec. 2014, available at http://america.aljazeera.com/articles/2014/12/4/
sierra-leone-fgmebola.html; Augustine Samba, Sierra Leone News: CODEP & Build on
Books Conclude Ebola Sensitization with Community Leaders, Awareness Times, 5 Nov.2014,
available at http://news.sl/drwebsite/publish/article_200526571.shtml; Silas Gbandia &
Makiko Kitamura, Ebola Forces Secret Societies to Curb Circumcision Rites, Bloomberg
Bus., 13 Jan.2015, available at http://www.bloomberg.com/news/articles/2015-01-14/
ebola-forces-secret-societies-to-curb-circumcision-rites.
Minister of Political and Public Affairs has since pressed for FGM’s perma-
nent cessation, describing it as a human rights violation,72 and the President
declared that harmful traditional practices suspended during the outbreak
should not be restarted.73 Likewise in Guinea, Muslim clerics called for an
end to FGM in the wake of Ebola.74 In Liberia, where half of women and
girls undergo FGM (49.8 percent),75 the Liberian government ordered the
suspension of FGM.76
Women’s rights advocates are hopeful that FGM’s link with Ebola ex-
posure can be used to bolster the health arguments long made by NGOs
in their quest to end FGM.77 Such links were also made in the context of
HIV.78 While the data remain scarce,79 WHO’s interagency statement on
FGM pointed to the use of nonsterile instruments, blood transfusions, and
higher rates of genital infections and herpes among women who have
undergone FGM as possible risk factors for HIV infection.80 Perhaps these
and other infectious disease-related arguments, together with the human
rights imperatives detailed in a number of instruments,81 can catalyze long
awaited change concerning FGM. On the other hand, the lack of codified
72. John Kassa Koroma, Minister Calls for Abolition of FGM, The New Citizen Tolongbo, 17
Apr. 2015, available at http://www.newctzen.com/index.php/11-news/2514-minister-
calls-for-abolition-of-fgm.
73. Owolabi Bjälkander et al, FGM in the Time of Ebola—Carpe Opportunitatem,4 The
Lancet Global Health e447–48 (2016), available at http://dx.doi.org/10.1016/S2214-
109X(16)30081-X.
74. Alexandra George, Guinea’s Muslim Clerics Believe an End to FGM Could Tackle Ebola,
Int’l Federation of Gynecology & Obstetrics (2 Sept. 2015), available at http://www.figo.
org/news/guineas-muslim-clerics-believe-end-fgm-could-tackle-ebola-0014853.
75. 28 Too Many, supra note 67, at 5, 31.
76. New Research: Half of Liberian Girls & Women Undergo FGM, Front Page Africa, 11
Dec. 2014, available at http://www.frontpageafricaonline.com/index.php/news/3971-
new-research-half-of-liberian-girls-women-undergo-fgm.
77. Interview with Jacqui Hunt, Founder, Equality Now London Office, Los Angeles, CA (23
Apr. 2015). See also Bjälkander, supra note 73.
78. Abimbola A. Olaniran, The Relationship Between Female Genital Mutilation and HIV
Transmission in Sub-Saharan Africa, 17 Afr. J. Reproductive Health 156 (2013), available
at http://www.ncbi.nlm.nih.gov/pubmed/24689327.
79. Khady Diouf & Nawal Nour, Female Genital Cutting and HIV Transmission: Is There an
Association?, 69 Am. J. Reproductive Immun’gy 50 (2013), available at http://onlinelibrary.
wiley.com/store/10.1111/aji.12028/asset/aji12028.pdf;jsessionid=2BBA64867BDD17E
11514FA4830BD3112.f03t04?v=1&t=ibl8jjls&s=79a81d644e2f424180c71c4437079f
6fcd434127.
80. WHO, et al., Eliminating Female Genital Mutilation: An Interagency Statement 34 (2008),
available at http://www.un.org/womenwatch/daw/csw/csw52/statements_missions/
Interagency_Statement_on_Eliminating_FGM.pdf.
81. CEDAW, supra note 4, ¶ 1,2,5; International Covenant on Economic, Social, and Cultural
Rights: The Right to Health, ¶ 12, G. A. Res. 2200A (XXI) (16 Dec. 1966); Convention
on the Rights of the Child: The Best Interests of the Child, ¶ 1, 3, U.N. CRC/C/GC/10 (25
April, 2007); African Commission on Human and People’s Rights, The African Protocol
on Women’s Rights: The Duty on States to Prohibit all Forms of FGM, at 5 (25 Nov.
2005).
national law proscribing the practice in Sierra Leone and Liberia may mean
that FGM will not ultimately stop.82
D. Burial Practices
In the early days of the recent Ebola outbreak, burial rituals played a significant
role in transmission.83 In Kenema, Sierra Leone, as many as 365 Ebola deaths
were linked to the funeral of a renowned traditional healer whom hundreds
of mourners came to bury.84 The rapid spread of the disease overwhelmed
the government hospital within a month, and the sick were turned away to
be cared for at home. In Dolo Town, Liberia fifty-two cases of Ebola were
linked to a single funeral,85 and in the early days of the outbreak in Guinea,
60 percent of all cases were linked to traditional burial practices.86
Rituals that involve the handling of corpses by family members are
particularly risky.87 In some places these rituals have gender-specific ele-
ments that influence who is exposed to infection, a fact well known before
the current outbreak. In Uganda’s 2000 to 2001 outbreak for example, 63
percent of Ebola infected patients were women, 88 largely due to care giving
duties including burial preparation. In the affected region, tradition dictates
that a woman in the patrilineal clan of the deceased prepares the corpse.
In Liberia, approximately 12 percent of the population adheres to Islam,
which requires gender-specific corpse preparation (only men can wash men
and only women can wash women).89 For the majority of the population
82. Interview with Tanya Sukhija, Program Officer, Equality Now, Los Angeles, CA (27 May
2015).
83. Cairo Platform, supra note 15; see also Ravi & Gauldin, supra note 10.
84. WHO, Sierra Leone: A Traditional Healer and a Funeral, available at http://www.who.
int/csr/disease/ebola/ebola-6-months/sierra-leone/en/.
85. Ravi & Gauldin, supra note 10, at 17. See also Drew Hinshaw, In Liberia, Burial Prac-
tices Hinder Battle Against Ebola, Wall St. J., 1 Sept. 2014, available at http://www.wsj.
com/articles/in-liberia-burial-practices-hinder-battle-against-ebola-1409619832; Abby
Ohlheiser, People are Struggling to bury the Ebola Dead. Here’s why, Wash. Post, 7
Aug. 2014, available at http://www.washingtonpost.com/news/world/wp/2014/08/07/
people-are-struggling-to-bury-the-ebola-dead-heres-why/.
86. Margaret Chan, Ebola Virus Disease in West Africa –No Early End to the Outbreak, 371
New England J. Med.1183 (2014), available at http://www.nejm.org/doi/full/10.1056/
NEJMp1409859.
87. M. Lamunu et al., Containing a Haemorrhagic Fever Epidemic: The Ebola Experience in
Uganda (October 2000–January 2001), 8 Int’l J. Infectious Diseases 27, 34 (2004), avail-
able at http://www.sciencedirect.com/science/article/pii/S1201971203000079#. See also
Cairo Platform, supra note 15; Ravi & Gauldin, supra note 10.
88. Barry S. Hewlett & Bonnie L. Hewlett, Ebola, Culture and Politics: The Anthropology of an
Emerging Disease 38 (2008).
89. Id. at 12; Ravi & Gauldin, supra note 10, at 2
however, aunts or other older female relatives prepare bodies for burial.90
According to Liberia’s Minister of Gender and Development, “A woman
finds it almost impossible to see her child or her husband fall sick and not
touch them. The ‘don’t touch, don’t bury’ rule is very difficult for women.”91
Health authorities in Sierra Leone, Liberia, and Guinea eventually took
steps to reduce the dangers of traditional burial, even as it ought to have been
done more quickly given the risks.92 Even once messages about the dangers
of burial practices were conveyed to communities, a shortage of adequately
trained personnel who could quickly manage deceased bodies remained.93
In Sierra Leone, burial teams consisted primarily of young men,94 poten-
tially putting these men at risk. On the other hand, new protocols requiring
the disinfection of bodies and the use of protective gear made this task safer
than when bodies were handled by loved ones.95
While this article focuses on gender, it bears underscoring that a range of
intersecting forces, such as race, nationality, and class, also affect the Ebola
response. For instance, many Ebola-affected communities harbor distrust of
Western health and humanitarian workers, driven by the history of colonial
exploitation of Africa, in combination with perceptions of cultural insensitivity
on the part of interveners.96 This mistrust had an adverse impact on the fight
against Ebola, when, for example, communities attempting to preserve their
traditions hid infected family members and conducted secret funerals.97 As
90. Caelainn Hogan, Ebola Striking Women more Frequently than Men, Wash. Post,
14 Aug. 2014, available at http://www.washingtonpost.com/national/health-
science/2014/08/14/3e08d0c8-2312-11e4-8593-da634b334390_story.html.
91. Ebola Deeply, Minister of Gender, Children, & Social Protection, Republic of Liberia,
Ebola and Women: Julia Duncan –Cassell, Liberia’s Minister of Gender (31 Oct. 2014),
available at http://www.mogcsp.mogdliberia.com/index.php/media-center/175-ebola-
women-julia-duncan-cassell-liberia-s-minister-of-gender.
92. Katherine Mueller, Burying Ebola’s Victims in Sierra Leone, Int’l. Federation of Red Cross
& Red Crescent Societies (26 July 2014), available at https://www.ifrc.org/en/news-and-me-
dia/news-stories/africa/sierra-leone/burying-ebolas-victims-in-sierra-leone-66528/; James
Butty, Liberia Tries to Ease Ebola Burial Logjam, Voice of America, 5 Aug. 2014, available
at http://www.voanews.com/content/liberia-tries-to-ease-ebola-burial-logjam/1971732.
html.
93. Abby Ohlheiser, People are Struggling to Bury the Ebola Dead. Here’s why, Wash. Post,
7 Aug. 2014), available at http://www.washingtonpost.com/news/world/wp/2014/08/07/
people-are-struggling-to-bury-the-ebola-dead-heres-why/, available at http://www.wash-
ingtonpost.com/news/world/wp/2014/08/07/people-are-struggling-to-bury-the-ebola-
dead-heres-why/.
94. Mueller, supra note 92; Mustapha Sesay, Ebola Kills 79 Teachers in Sierra Leone, Standard
Times Press, 5 Feb. 2015), available at http://standardtimespress.org/?p=5799.
95. WHO, Field Situation: How to Conduct Safe and Dignified Burial of a Patient who has Died
from Suspected or Confirmed Ebola Virus Disease (2014), available at http://apps.who.int/iris/
bitstream/10665/137379/1/WHO_EVD_GUIDANCE_Burials_14.2_eng.pdf.
96. Hewlett & Hewlett, supra note 88, at 37–111.
97. Ravi & Gauldin, supra note 10, at 17.
was made clear in the context of HIV, an effective response must proceed
not just scientifically, but also respectfully in terms of cultural traditions.98
E. Gender-Based Violence
Prior to Ebola, Sierra Leone was already coping with high levels of trauma
brought on by sexual violence during the country’s civil war.99 Both dur-
ing the war and afterward, violence against women has been one of the
conflict’s brutal legacies.100 Conflict-related sexual violence against men is
also gendered, even as it remains largely absent from human rights instru-
ments designed to address sexual violence.101 In Liberia researchers found
that while 9 percent of all females reported conflict related sexual violence,
7 percent of all males also reported it, as did 32 percent of male and 42
percent of female combatants.102
Both women and men who had experienced sexual violence may have
experienced compounded trauma as the Ebola outbreak wreaked its havoc.
The crowded, mixed-gender Ebola care centers did little to preserve dignity
and provide a sense of safety. 103 And like survivors of sexual violence, survi-
vors of Ebola were often stigmatized and shunned, bringing social isolation
on top of trauma.
Three Sierra Leonean rape crisis centers known as the Rainbow Centres
provide legal advocacy and health services for sexual violence survivors.104
The centers continued their medical examinations of those reporting rape
during the Ebola outbreak, but staff members themselves became stigma-
tized due to community fear that conducting exams exposed them to Ebola.
The disease thereby had the potential to disrupt an important rights-based
intervention concerning sexual violence; due to the tenacity of the rape
crisis staff, it did not.105
98. Rachel King, UNAIDS, Ancient Remedies, New Disease: Involving Traditional Healers in Increasing
Access to AIDS Care and Prevention in East Africa (2002), available at http://data.unaids.
org/Publications/irc-pub02/jc761-ancientremedies_en.pdf.
99. Lansana Fofana, Rights-Sierra Leone: No End to Rape, Inter Press Service, 14 Dec. 2004),
available at http://www.ipsnews.net/2004/12/rights-sierra-leone-no-end-to-rape/.
100. Press Release, UNDP, Sierra Leone: Sexual Violence Remains Unpunished (2 Feb.
2010), available at http://www.undp.org/content/undp/en/home/presscenter/pressre-
leases/2010/02/10/sierra-leonesexual-violence-carrying-on-with-impunity.html.
101. Lara Stemple, The Hidden Victims of Wartime Rape, N.Y. Times, 1 Mar. 2011, available
at http://www.nytimes.com/2011/03/02/opinion/02stemple.html.
102. Kirsten Johnson et al., Association of Combatant Status and Sexual Violence with Health
and Mental Health Outcomes in Postconflict Liberia, 300 J. Am. Med. Ass’n 676 (13 Aug.
2008), available at http://jama.jamanetwork.com/article.aspx?articleid=182379.
103. Greenbank interview, supra note 65.
104. Lansana Fofana, Rights-Sierra Leone: No End to Rape, Inter Press Service, 14 Dec. 2004,
available at http://www.ipsnews.net/2004/12/rights-sierra-leone-no-end-to-rape/.
105. Greenbank interview, supra note 65.
In Guinea, early marriage remains a pervasive violation of girls’ human

rights.106 More than 60 percent of Guinean women are married by age eigh-
teen; more than one-fifth by fifteen. Those married as girls are more likely
to experience domestic violence, and among married women and girls ages
fifteen to nineteen, fewer than half know how to prevent HIV.107 In this way
human rights violations, violence, and disease dangerously intersect.
Thanks in large part to the work of women’s rights organizations, inter-
national agencies now recognize the “undeniable link” between violence
against women and HIV.108 The three Ebola-hit countries each have their own
troubling legacy when it comes to gender-based violence against women
and men, and the compounding of disease-based and violence-based trauma
within communities still needs urgent attention. It took decades for the link
between HIV and gendered violence to be acknowledged and addressed; a
close look at whether those disempowered by violence were at greater risk
of Ebola would provide crucial perspective for interventions moving forward.
IV. PUBLIC HEALTH SYSTEMS PRACTICES
Household and community gender roles are clearly only one factor influenc-
ing vulnerability to disease. In the Ebola-hit region, the impact of other factors
such as extreme poverty and post-conflict turmoil are hard to overstate.109
In this section we consider the region’s struggling health systems, cognizant
of the infrastructural and resource constraints that, together with corruption
and insufficient political will, severely hamper the ability of women and
men to realize their right to health.110 Others have detailed the national and
international health system strengthening needed to ensure a more rapid,
efficient, and coordinated response to future outbreaks.111 Here, we look
at the way gender norms have informed health systems’ response to Ebola.
106. CEDAW, supra note 4, ¶ 12, 16, 19, 24.

107. UNICEF, Early Marriage: A Harmful Traditional Practice (2005), available at http://www.
unicef.org/publications/files/Early_Marriage_12.lo.pdf.
108. WHO, UN AIDS, Addressing Violence Against Women and HIV/AIDS: What Works?, 1 (2010),
available at http://apps.who.int/iris/bitstream/10665/44378/1/9789241599863_eng.pdf.
109 The Pathology of Inequality: Gender and Ebola in West Africa, 23 IDS Practice Paper
in Brief (Feb. 2015), available at http://opendocs.ids.ac.uk/opendocs/bitstream/han-
dle/123456789/5856/ID564%20Online.pdf;jsessionid=1815E9B1B3A661AA530285D
410997D79?sequence=1.
110. CESCR General Comment No. 14: The Right to the Highest Attainable Standard of Health
(Art. 12), Committee on Economic, Social and Cultural Rights, 22nd Sess., ¶ 8, U.N. Doc.
E/C.12/2000/4 (2000).
111. Lawrence O. Gostin & Eric A. Friedman, A Retrospective and Prospective Analysis of
the West African Ebola Virus Disease Epidemic: Robust National Health Systems at the
Foundation and an Empowered WHO at the Apex, 385 The Lancet, 1902 (2015), avail-
able at http://www.thelancet.com/pdfs/journals/lancet/PIIS0140-6736(15)60644-4.pdf.
A. Maternal and Other Reproductive Care
As with many ongoing health services in the region, maternal and reproduc-
tive health services came to a virtual standstill as Ebola escalated. Pregnant
women were particularly impacted due to their need for prenatal and ma-
ternal healthcare.112 With more than 1.3 million annual births in Guinea,
Liberia, and Sierra Leone,113 the number of pregnant women in need who
were turned away by overwhelmed health staff was likely significant;114
projections indicated a doubling of maternal mortality rates.115
Even when pregnant women managed to access care during the crisis,
the care itself carried risk: two of the three prior Ebola outbreaks involved
transmission in maternity settings.116 Not only does maternity care decline
due to the fear some pregnant women have of entering clinics during an
outbreak,117 healthcare workers themselves fear contracting Ebola from in-
fected (or potentially infected) pregnant women during delivery.118
Despite this history of trepidation, publicly disseminated information
about pregnancy- related implications of Ebola remains scant.119 As in the
early days of HIV, the lack of clear protocols led uncertain providers to delay
or deny care to infected pregnant women.120
112. Menéndez, supra note 11.

113. UNFPA, International Confederation of Midwives &WTO ,The State Of The World’s Midwifery
2014: A Universal Pathway. A Woman’s Right To Health (2014), available at http://www.
unfpa.org/sites/default/files/pub-pdf/EN_SoWMy2014_complete.pdf.
114. “Women with obstetric haemorrhage, in particular, often do not receive appropriate
care owing to Ebola-related discrimination, the complex management required, and
their high mortality rate.” Menendez et al., supra note 11, at e130.
115. Erika Check Hayden, Maternal Health: Ebola’s Lasting Legacy: One of the Most Deves-
tating Consequences of the Ebola Outbreak will be its Impact on Maternal Health, 519
Nature, 24 (2015), available at http://www.nature.com/news/maternal-health-ebola-s-
lasting-legacy-1.17036.
116. Loretta P. Finnegan, et al., Infectious Diseases and Maternal Morbidity and Mortality, 10
Emerg Infect Dis. (2004), available at http://wwwnc.cdc.gov/eid/article/10/11/04-0624_05_
article.
117. Hayden, supra note 115; Ravi & Gauldin, supra note 10, at 3.
118. Courtney Malcom, Gender Dimensions of the Ebola Outbreak: A Cycle of Fear for
Pregnancy and Childbirth, Universal Human Rights Student Network (10 Jan 2015), avail-
able at http://www.uhrsn.org/2015/01/gender-dimensions-ebola-outbreak-cycle-fear-
pregnancy-childbirth/; Rep. of Sierra Leone, UNFPA, Dept. for Inter. Dev., Irish Aid, Options,
Rapid Assessment of Ebola Impact on Reproductive Health Services and Service Seeking Behaviour
in Sierra Leone 2 (2015), available at http://reliefweb.int/sites/reliefweb.int/files/resources/
UNFPA%20study%20_synthesis_March%2025_final.pdf.
119. WHO 2007, supra note 12, at 14.
120. The Henry J. Kaizer Family Foundation, A Report on Women and HIV/AIDS in the U.S. 3–6
(2013), http://www.womenhiv.org/wp-content/uploads/2013/06/KFF-2013-report-on-
women-and-HIV.pdf; Elizabeth B. Cooper, Why Mandatory HIV Testing of Pregnant
Women and Newborns Must Fail: A Legal, Historical, and Public Policy Analysis 3
Cardozo Women’s L. J. 13, at 14–15 (1996), available at http://ir.lawnet.fordham.edu/
faculty_scholarship/396.
Limited evidence does suggest that when infected with Ebola, pregnant
women are at greater risk of death,121 but better evidence is needed to
determine the biological links to maternal mortality, as well as the mecha-
nisms through which the disease may jeopardize maternal health. In prior
outbreaks, the number of people infected was too low to gain a thorough
understanding of Ebola’s effect on pregnancy, and little research was done.122
With many more people infected this time around, research is occurring,
and maternal survival of Ebola has now been documented.123 In January 2015,
Doctors without Borders opened a maternity unit for pregnant women with
Ebola. They found that the optimal course is to induce birth in a controlled
way, promoting safety for the mother and healthcare workers alike. Hopefully
this development foretells a significant advance for the health and rights of
pregnant women infected with Ebola.124
Over the years, the international response to HIV was criticized for using
a “siloed” approach that failed to attend to a community’s broader health
needs beyond HIV.125 Similarly, those responding to Ebola, propelled by the
emergency nature of the outbreak, were able to provide little else. Maternal
care was already insufficient in Guinea, Liberia, and Sierra Leone.126 Likewise,
resources for malaria, diarrhea, and pneumonia, (all of which jeopardize
maternal health) were strained.127 The nearly exclusive prioritization of the
Ebola response—however necessary it may have seemed—undoubtedly
resulted in higher morbidity and mortality for those women denied other
urgently needed care.128 This echoes one of HIV’s greatest debates: whether
121. Centers for Disease Control and Prevention, Guidance for Screening and Caring for
Pregnant Women with Ebola Virus Disease for Healthcare Providers in U.S. Hospitals,
available at http://www.cdc.gov/vhf/ebola/healthcare-us/hospitals/pregnant-women.html.
122. Medecins Sans Frontieres, An Additional Challenge: Tending to Pregnant Women
with Ebola, (29 Jan. 2015), available at http://www.doctorswithoutborders.org/article/
additional-challenge-tending-pregnant-women-ebola.
123. Medecins Sans Frontieres, Pregnant With Ebola: A Survivor’s Tale, (29 Jan. 2015), avail-
able at http://www.doctorswithoutborders.org/article/pregnant-ebola-survivors-tale;
Kevin Sieff, Could a Pregnant Woman Change the way we Think About Ebola?, Wash.
Post, 4 Jan. 2015, available at http://www.washingtonpost.com/world/could-a-pregnant-
woman-change-the-way-we-think-about-ebola/2015/01/04/a5ed5a7f-73a6-427b-b515-
6f8f7e77801e_story.html.
124. Center for Reproductive Rights, Briefing Paper: Maternal Mortality: Preventing Maternal Mor-
tality and Ensuring Safe Pregnancy: Government Duties to Ensure Pregnant Women’s Survival
and Health (2008), available at http://www.reproductiverights.org/sites/crr.civicactions.
net/files/documents/BRB_Maternal%20Mortality_10.08.pdf.
125. Altarum Roundtable Report, Altarum Policy Roundtable: Challenges in Global Health:
Taking a Systems View with Laurie Garrett, 3 Council on Foreign Relations, 17 July
2007, at 5, available at http://altarum.org/sites/default/files/uploaded-publication-
files/17_July_07_Roundtable_Report_Global-Health-RTR.pdf.
126. Menéndez et al., supra note 11, at e130.
127. WHO, Who Country Health Profiles: Guinea, Liberia, Sierra Leone, available at http://
www.who.int/countries/en.
128. Alexandre Delamou et al., Ebola in Africa: Beyond Epidemics, Reproductive Health
in Crisis, 384 The Lancet 2105 (2014), available at http://www.thelancet.com/journals/
lancet/article/PIIS0140-6736%2814%2962364-3/fulltext.
the resource demands of HIV ought to be in competition with other needed

services, such as maternal and reproductive care.
International human rights instruments are quite strong on the health-
related rights of pregnant women129 and have been well utilized during the
HIV response. Ancillary pregnancy-related issues such as breastfeeding,130
conception post-infection, and abortion,131 eventually garnered some atten-
tion from the HIV and human rights communities, but much later than would
have been ideal—and still inadequately so.132 These health issues have also
taken a backseat during the Ebola crises, but attention to the fuller spectrum
of reproductive health needs during and after Ebola is urgently needed.
B. AIDS Treatment and Other Health Services
Men and women in Guinea, Liberia, and Sierra Leone who were on anti-
retroviral therapy (ART) were negatively affected by the disruption in access
to ART and related services caused by the Ebola crisis. Advocates have long
used international human rights standards to press for expanded access to
ART,133 and of the 210,000 people living with HIV/AIDs in Guinea, Liberia,
and Sierra Leone, approximately 50,000 were receiving it prior to the crisis.134
In Sierra Leone alone, more than 130 facilities were providing ART,135
but many ceased to function as the Ebola crisis spread.136 NGOs like the
Network of HIV Positives stopped offering counseling designed to improve
129. CEDAW, supra note 4, art. 12; The Commission on Human Rights Res. 995/44 (3 Mar.
1995); Office of the U.N. High Commissioner for Human Rights, Joint U.N. Programme on
HIV/AIDS, International Guidelines on HIV/AIDS and Human Rights (2006), available at
http://www.ohchr.org/Documents/Publications/HIVAIDSGuidelinesen.pdf.
130. Sarah MacCarthy et al., “I Did Not Feel Like a Mother”: The Success and Remaining
Challenges to Exclusive Formula Feeding Among HIV-Positive Women in Brazil, 25 Aids
Care 726 (2013), available at http://www.tandfonline.com/doi/pdf/10.1080/09540121.2
013.793274.
131. Sarah MacCarthy et al., Contemplating Abortion: HIV-Positive Women’s Decision to
Terminate Pregnancy, 16.2 Culture, Health, & Sexuality 190 (2014), available at http://
www.tandfonline.com/doi/abs/10.1080/13691058.2013.855820?url_ver=Z39.88-
2003&rfr_id=ori%3Arid%3Acrossref.org&rfr_dat=cr_pub%3Dpubmed&#.VSR4b_nF_To.
132. Sofia Gruskin & Sarah MacCarthy, Neglected Realities: Pregnancy, Childbirth, and Abor-
tion in the Context of HIV, Rewire, 5 Oct. 2010, available at http://rhrealitycheck.org/
article/2010/10/05/protecting-reproductive-sexual-rights-hivpositive-women/.
133. Sofia Gruskin et al., Beyond The Numbers: Using Rights-Based Perspectives To Enhance
Antiretroviral Treatment Scale-Up, 21 AIDS Official J. Int’l AIDS Soc’y S13 (2007), available
at http://journals.lww.com/aidsonline/Fulltext/2007/10005/Beyond_the_numbers__us-
ing_rights_based.3.aspx.
134. UNAIDS, HIV and Ebola Update 3 (2014), available at http://www.unaids.org/sites/default/
files/media_asset/2014_HIV-Ebola-update_en.pdf.
135. UNAIDS, Sierra Leone National AIDS Response Progress Report 2014 (2014), available at
http://www.unaids.org/sites/default/files/country/documents/SLE_narrative_report_2014.
pdf.
136. UNAIDS, HIV and Ebola Update, supra note 134.
treatment adherence,137 and UNDP reported that HIV testing dropped dra-
matically in locations hard hit with Ebola. 138
In each of the three Ebola-impacted countries, women are more likely
to be HIV positive than men,139 and among people who are positive, women
are more likely to access treatment than men.140 Thousands of those need-
ing ART treatment in these three countries at any given time are pregnant
women.141 Ebola’s undoing of even the limited victories to increase ART
access in these countries, necessarily implicates the very gender-related
concerns long ago identified by advocates for HIV/AIDS treatment—with
potentially long-term negative impacts for affected populations and for drug
resistance more generally.142
HIV is of course not the only health matter neglected during the Ebola
crisis. Some have even estimated that the lack of access to a range of health
services during the Ebola outbreak killed more people than Ebola itself.143
The sharp decline in vaccination rates,144 for example, likely yielded a
137. Tomi Ajayi, Ebola—Undoing HIV Progress in Sierra Leone, Christian Aid (1 Dec. 2014),
available at http://www.christianaid.org.uk/pressoffice/blog/ebola-undoing-hiv-progress-
in-sierra-leone.aspx.
138. Misha Hussain, Ebola Halts HIV Progress in Sierra Leone, Says U.N., Thomson Reuters
Foundation, 27 Feb. 2015, available at http://www.trust.org/item/20150227140020-
jjhnb?view=print.
139. UNAIDS, UNAIDS Country Profiles: Guinea (2013), available at http://www.unaids.org/
en/regionscountries/countries/guinea; UNAIDS, UNAIDS Country Profiles: Sierra Leone
(2013), available at http://www.unaids.org/en/regionscountries/countries/sierraleone;
UNAIDS, UNAIDS Country Profiles: Liberia (2013), available at http://www.unaids.org/
en/regionscountries/countries/liberia/#.
140. UNAIDS, Access to Antiretroviral Therapy in Africa: Status Report on Progress Towards the
2015 Targets (2013), available at http://www.unaids.org/sites/default/files/media_as-
set/20131219_AccessARTAfricaStatusReportProgresstowards2015Targets_en_0.pdf.
141. WHO, Consolidated Guidelines on the Use of Antiretroviral Drugs for Treating and Preventing
HIV Infection: Recommendations for a Public Health Approach 107 (2013), available at http://
apps.who.int/iris/bitstream/10665/85321/1/9789241505727_eng.pdf?ua=1; UNAIDS,
supra note 135; Republique de Guinee, Revue des progrés vers la Réalisation des Cibles de la
Déclaration 2011 de l’onu sur le vih et le Sida (2014), available at http://www.unaids.org/
sites/default/files/en/dataanalysis/knowyourresponse/countryprogressreports/2014countri
es/GIN_narrative_report_2014.pdf; UNAIDS, Sierra Leone National AIDS Response Progress
Report 2014 (2014), available at http://www.unaids.org/sites/default/files/country/docu-
ments/SLE_narrative_report_2014.pdf.
142. Center for Health and Gender Equity, Gender, AIDS, and ARV Therapies: Ensuring that Women
Gain Equitable Access to Drugs within U.S. Funded Treatment Initiatives (2004), available at
http://www.heart-intl.net/HEART/082504/GendeAIDSandARTherapies2.pdf.
143. David K Evans, et al., Health-care Worker Mortality and the Legacy of the Ebola Epi-
demic, 3.8 The Lancet Global Health, e439-440 (2015), available at http://www.thelancet.
com/journals/langlo/article/PIIS2214-109X(15)00065-0/fulltext?rss=yes ; Vallieres, et al,
Can Sierra Leone Maintain the Equitable Delivery of their Free Health Care Initiative?
The Case for More Contextualized Interventions: Results of a Cross-Sectional Survey,
16 BMC Health Serv Res. 258 (2016), available at http://bmchealthservres.biomedcentral.
com/articles/10.1186/s12913-016-1496-1; Alyssa S. Parpia et al, Effects of Response to
2014-2015 Ebola Outbreak on Deaths from Malaria, HIV/AIDS, and Tuberculosis, West
Africa, Emerg Infect Dis. (2016), available at http://dx.doi.org/10.3201/eid2203.150977.
144. UNICEF, UNICEF Helps Restart Measles Immunizations in Ebola-hit Countries (2015),
available at http://www.unicef.org/media/media_78416.html, available at http://www.
unicef.org/media/media_78416.html
dangerous increase in vaccine-preventable diseases with disproportionate

impacts on women as caregivers.145 Measles cases are on the increase in
the three countries, with a threefold and fourfold increase in Sierra Leone
and Guinea, respectively.146 One model projected that healthcare capacity
reductions during Ebola led to more than 10,000 additional deaths caused
by malaria, tuberculosis, and HIV/AIDS combined.147
C. Healthcare Workers
Healthcare systems run on the labor of healthcare workers who comprise a

group at high risk for all manner of infections due to occupational exposure
to infectious agents. In low income countries where the healthcare infra-
structure is often underdeveloped and overburdened, inadequate training
and protective measures placed health workers at risk for Ebola.148 WHO
reported that health workers were between twenty-one and thirty-two times
more likely to be infected in the recent Ebola outbreak than people in the
general population, with nurses and nurse aides accounting for more than
half of all health worker infections.149
This risk is frequently acknowledged, but with insufficient attention to
its gender dimensions. The HIV/AIDS response has not as of yet generated
notable human rights norms concerning health workers and gender.150 This
area is in need of further development, particularly as Ebola has brought
gender and healthcare labor to the fore, as we now detail.
When infectious diseases are intensified in healthcare settings, the risk of
exposure can map onto the gendered divisions of labor in the workplace.151
145. Swiss Tropical and Public Health Institute & WHO, Gender and Immunisation: Summary Report
for SAGE 10 (2010), available at http://www.who.int/immunization/sage/1_immuniza-
tion_gender_reports_without_graphics.pdf.
146. UNICEF, supra note 144.
147. Parpia, supra note 143.
148. The Norwegian University of Science and Technology (NTNU), Ebola’s Deadly Toll On
Healthcare Workers, Science Daily, 13 Oct. 2014, available at http://www.sciencedaily.
com/releases/2014/10/141013090223.htm.
149. WHO, A Preliminary Report: Health worker Ebola infections in Guinea, Liberia and Sierra Leone
1 (2015), available at http://apps.who.int/iris/bitstream/10665/171823/1/WHO_EVD_
SDS_REPORT_2015.1_eng.pdf?ua=1.
150. In the context of HIV/AIDS, the most common cause of infection among healthcare
workers are needle-stick injuries, which disproportionately affect women due to their
disproportionate representation among healthcare workers. WHO, Taking Sex and Gender
into Account in Emerging Infectious Disease Programmes: An Analytical Framework 28 (2011),
available at http://www.wpro.who.int/topics/gender_issues/Takingsexandgenderintoac-
count.pdf;See also Susan Q. Wilburn & Gerry Eijkemans, Preventing Needlestick Inju-
ries Among Healthcare Workers: A WHO–ICN Collaboration, 10 Int’l J. Occupational
& Envtl. Health 451, 452 (2004), available at http://www.who.int/occupational_health/
activities/5prevent.pdf; WHO 2002, supra note 19, at 74.
151. WHO, Addressing Sex and Gender in Epidemic, supra note 12, at 29.
Healthcare settings are historically rife with rigid gender roles resulting in
“occupational sex segregation.”152 This can affect decision making author-
ity, power relations, and day-to-day duties. Reinforced by gender norms, a
hierarchy exists whereby men tend to occupy dominant, higher status roles
and women hold subordinate and lower status positions.153 Women are
also generally overrepresented among frontline healthcare workers such as
nurses and midwives.154 In Sierra Leone for example, nurses and midwives
represent over 70 percent of all health workers.155
However, WHO’s latest data indicates that 61 percent of Ebola-infected
health workers were men. Of the four most at-risk employment categories,
three are male dominated. Men are: 95 percent of medical workers such as
doctors and physician assistants, 88 percent of laboratory workers, and 77
percent of maintenance workers, janitorial staff, drivers, and laundry workers.
The other most at-risk category—nursing—is majority female (55 percent).156
Broader societal gender dynamics may explain some of the findings
concerning gender and Ebola risk. For example in Sierra Leone, men have
higher literacy rates157 and more work experience, rendering them more
employable as ambulance drivers and other healthcare staff as the outbreak
accelerated and aid money began to flow. In this way, men’s skill set and
access to hiring networks simultaneously gave them greater access to new
financial resources but also put them at increased risk for Ebola.158
Any thinning of the healthcare workforce further weakens these already
fragile healthcare systems in which the number of workers was insufficient to
begin with.159 In Sierra Leone for example, there were only 0.2 doctors and
1.7 nurses per 10,000 inhabitants before the outbreak; making subsequent
losses in personnel particularly devastating.160 According to one model,
health worker mortality due to Ebola will yield more than 4,000 additional
maternal deaths in childbirth per year.161
152. WHO, Taking Sex and Gender into Account, supra note 150, at 25.
153. Id. at 28.
154. WHO, Addressing Sex and Gender in Epidemic, supra note 12, at 29.
155. Sierra Leone Ministry of Health and Sanitation, National Health Sector Strategic Plan
2010–2015, at 23 (2009), available at http://www.internationalhealthpartnership.net/
fileadmin/uploads/ihp/Documents/Country_Pages/Sierra_Leone/NationalHealthSector-
StrategicPlan_2010-15.pdf.
156. WHO, A Preliminary Report, supra note 149, at 4.
157. “Sierra Leone—total population: 48.1 percent, male: 58.7 percent, female: 37.7 (2015
est.).” Central Intelligence Agency, The World Factbook: Literacy, available at https://www.
cia.gov/library/publications/the-world-factbook/fields/2103.html.
158. Telephone Interview by Lara Stemple, with Yolanda Barbera, Senior Technical Advisor
for Child Health, International Rescue Committee (11 Mar. 2015).
159. WHO 2002, supra note 19, at 74.
160. Silvia Dallatomasina, Ebola Outbreak In Rural West Africa: Epidemiology, Clinical Features
And Outcomes, 20 Tropical Medicine and International Health 4, 449 (2015), available at
http://onlinelibrary.wiley.com/store/10.1111/tmi.12454/asset/tmi12454.pdf?v=1&t=i7w
9itqd&s=aa149960d5a76e78fd2ee837226c092cb2d4e333.
161. Evans, supra note 143.
In previous Ebola outbreaks, the lack of protective equipment meant

some of the earliest victims were health workers.162 Despite this experience,
early protective equipment was still inadequate, and Ebola was again tragic
for health workers.163 Many who survived reported despair, fear, and lack
of pay.164
As WHO acknowledges, further inquiry concerning the gender and
sex-specific risks faced by health workers is needed.165 In the meantime, the
robust set of human rights and international labor standards that guarantee
safe working conditions for all166 should inform and complement any gender
analysis concerned with the Ebola crisis.
V. OTHER ECONOMIC AND CULTURAL IMPACTS
While far from exhaustive, this section touches upon what is known to date
about the gender and human rights implications of Ebola’s impact in various
cultural and economic spheres (the cost of home care, market and border
shutdowns, school closures, public gatherings, and employment).
The lessons from HIV are particularly instructive when it comes to ex-
amining the economic consequences of large-scale infectious disease. For
example by the end of the 1990s, it had become apparent to policymakers
that public sector health settings, including hospitals, were not the most
effective vehicles for delivering HIV/AIDS treatment and care. To benefit all
concerned, a decision was made to pivot resources directly toward affected
communities. Hospital outreach, whereby hospital staff provided care in
patients’ homes was a step in this direction. 167 Later, based on the premise
that patients were better off being cared for by loved ones, Home Based
Care (HBC) programs were formalized, and care was provided by family or
friends, as well as by more formally trained workers, usually women, and
162. Hewlett & Hewlett, supra note 88, at 90.

163. Jeffrey Leow et al., Scarcity Of Healthcare Worker Protection In Eight Low- And Middle-
Income Countries: Surgery And The Risk Of HIV And Other Bloodborne Pathogens, 17
Tropical Med. & Int’l Health 3, 399 (2012), available at http://www.ncbi.nlm.nih.gov/
pubmed/22035344; WHO, WHO, Ebola Situation Reportt (25 Mar. 2015), available at
http://apps.who.int/ebola/current-situation/ebola-situation-report-25-march-2015.
164. Amy Maxmen, Frontline Health Workers Were Sidelined in $3.3bn Fight Against Ebola,
Newsweek 19 May 2015, available at http://europe.newsweek.com/frontline-health-workers-
were-sidelined-3-3bn-fight-against-ebola-327485.
165. WHO, A Preliminary Report, supra note 149, at 1.
166. Universal Declaration of Human Rights, ¶ 23, 24, 25, G.A. Res. 217A (III), U.N. Doc.
A/810 at 71 (1948). ; International Covenant on Economic, Social, and Cultural Rights,
¶ 6, 7b,12, G. A. Res. 2200A (XXI) (Dec. 16, 1966); CEDAW, supra note 4, art. 11.2;
International Labour Organization (ILO), Occupation Safety and Health Convention
(Convention 155) (22 Jun. 1981) available at http://www.ilo.org/dyn/normlex/en/f?p=N
ORMLEXPUB:12100:0::NO::P12100_INSTRUMENT_ID:312300.
167. ICRW, supra note 34, at 14–15, 23.
often on a voluntary basis.168 Patients often preferred this model, and in

some cases family members were relieved of extensive travel to hospitals.
For these reasons and others, HBC is now estimated to be the largest source
of HIV/AIDS care globally.169
Governments promote HBC as a “cost effective” response. But is it cost
effective or merely cost shifting? We have noted the physical and emotional
toll on caregivers above, but the economic costs are also significant. The
care work is usually unremunerated and unsupported. Critics describe it as
exploitation of unpaid labor, made possible by the gender bias that assumes
care work is women’s responsibility and a global attitude that devalues
women’s labor.170 The same can be seen with respect to women’s role in
the home care of those sick and dying from Ebola.
The economic consequences of the Ebola outbreak also included shop
and market closures. In Liberia women are responsible for as much as 70
percent of the country’s cross-border trade in foodstuffs.171 Border closures
and travel restrictions in response to the outbreak diminished the earning
power of these women, and this disproportionately affected female-led
households throughout West Africa, not only in Ebola-hit countries.172 In
Ebola-affected households, the loss of income was compounded by new
expenditures for medication and treatment.173
In addition, many public institutions temporarily shut their doors as an
Ebola prevention measure. Widespread school closures, for instance, had
months-long implications for teachers and students who could not go to
school and the primary caregivers who had to take over childcare when
schools were shut.174 Moreover, like HIV before it,175 the Ebola epidemic
may have an impact on educational access due to teacher deaths.176 This
168. AVERT, Health & Wellbeing When Living With HIV, available at http://www.avert.org/
hiv-aids-home-based-care.htm.
169. Carolyn Hannan, Director, Division for the Advancement of Women, Opening Statement
at the Expert Group Meeting on The Equal Sharing of Responsibilities Between Women
and Men, Including Care-Giving in the Context of HIV/AIDS 6 (6 Oct. 2008), available
at http://www.un.org/womenwatch/daw/egm/equalsharing/2008%20EGM%20Caring%20
Opening%20CH.pdf.
170. VSO, Policy Brief: Reducing the Burden of HIV and AIDS Care on Women and Girls 5
(2006), available at https://www.vsointernational.org/sites/vso_international/files/bur-
den_of_care_tcm76-21029_0.pdf.
172. Id.
174. UN Women, End Ebola: A UN Women WCARO Special Edition 1 (2014), available at. http://
www.unwomenwestandcentralafrica.com/uploads/2/0/3/3/20331433/ebola_special_edi-
tion_unwomenwcaro_sept2014.pdf.
175. UNESCO, Education for All Global Monitoring Report 2005: The Quality Imperative, 114
(2004), available at http://unesdoc.unesco.org/images/0013/001373/137333e.pdf.
176. Government of Sierra Leone Ministry of Education Science and Technology, Education Coun-
try Status Report: An Analysis for Further Improving the Quality, Equity and Efficiency of
the Education System in Sierra Leone, 6 (2013), available at http://unesdoc.unesco.org/
images/0022/002260/226039e.pdf; Sesay, supra note 94.
could disrupt important work by affected countries to promote universal

education as a key to catalyzing gender equality.177
Women’s organizations in Sierra Leone, some of whom use a human
rights framework and conduct legal education around women’s rights, played
an important role with potentially useful programming implications during
the outbreak. When the government banned all public meetings unless they
were about Ebola, women’s organizations incorporated Ebola content into
their meetings, which then enabled them to serve as one of the few safe
spaces in which women could begin to process the grief and trauma being
wrought by the disease.178
These examples only scratch the surface of Ebola’s impact on women’s
social and economic lives. Men’s livelihoods, too, were greatly disrupted.
Because traditional gender expectations cast men as the breadwinners, un-
employment can threaten a man’s ability to live up to this masculine ideal.
Research in many countries, including Sierra Leone and Liberia, finds that
men without income struggle to achieve “socially respected manhood,” and
may be more likely to engage in violence.179At the same time, Ebola-based
aid money sent to the region created employment opportunities that differ-
ently affected women and men. As the full scope of Ebola’s impact on hard
hit communities is digested, the role of gender ought to be more clearly
studied, together with its implications for public health crises more generally.
VI. CONCLUSION AND WAYS FORWARD
Gender specialists on the ground during the Ebola outbreak have observed
that, while Ebola was indeed an emergency of the highest order, an attitude
of “Ebola first, gender later,” seemed to prevail, treating gender concerns as
an optional add-on instead of something that, if thoroughly incorporated
from the beginning, would result in a more effective response.180 Not only
does this overlook lessons from HIV, it disregards decades of work to bring
gender concerns to the fore during emergency responses to armed conflict
and natural disasters.181
What standards, protocols, or policies can inform infectious disease
prevention and response globally and within affected countries moving
177. UNICEF, A Human Rights-Based Approach to Education for All (2007), available at http://www.
unicef.org/publications/files/A_Human_Rights_Based_Approach_to_Education_for_All.
pdf.
178. Greenbank Interview, supra note 65.
179. Barker & Ricardo, supra note 64, at v, 8.
180. Greenbank Interview, supra note 65.
181. Dharini Bhuvanendra & Rebecca Holmes, Special Feature: Gender-Based Violence in
Emergencies, Humanitarian Exchange (2014), available at http://www.ifrc.org/docs/IDRL/
HE_60_web_1%20(1).pdf.
forward? In addition to the range of human rights instruments referenced

throughout this article (see Table 1), a few other documents bear mention.
WHO promulgated a relevant analytical framework in 2007, “Addressing
sex and gender in epidemic-prone infectious diseases.”182 While insufficiently
attentive to the value of human rights principles for interventions and research
(the term “human rights” is used in the eighty page framework only once),
it nevertheless contributes important specifics, including questions to ask
when performing a gender analysis, inclusive of both women and men.183
While additional work has been done at the regional level, the time is ripe
to update this global framework, given the gender insights to be gleaned
from the last several years of the HIV, Ebola, and Zika crises.
Some have called for increased engagement directly with women
throughout the Ebola response to inform developments in research, healthcare
systems, and support for caregivers.184 The imperative to include women in
the process can be found in the Security Council’s Resolution 2177 on Ebola,
which “emphasizes that responses to the Ebola outbreak should address the
specific needs of women and stresses the importance of their full and effec-
tive engagement in the development of such responses.”185 Unfortunately,
no other gender-related considerations concerning women or men were
addressed by the Council.
Some UN agencies have issued recommendations that will have gender-
specific impacts. For example, to address the ART continuity crisis during the
Ebola outbreak, UNAIDS advocated for a “minimum HIV service package”
as part of the relief effort. Among other measures, it recommended includ-
ing ART among the emergency drug supplies and prioritizing all pregnant,
breastfeeding women, as well as children with known HIV status for PMTCT
services.186
National-level actors also took practical matters into their own hands
in myriad ways. In Liberia a partnership between UN Women and the
Ministry of Gender and Development trained representatives to raise aware-
ness about Ebola in local communities, with a focus on women and girls.
The Minister has called for better gender-disaggregated data, and the UN
Women representative in Liberia asserted that gender dimensions must be
taken into account when providing emergency assistance.187 In Sierra Leone,
182. WHO 2007, supra note 12, at 2.

183. Id.
185. SC Res. 2177, supra note 1, ¶ 2.
186. Inter-Agency Task Team to Address HIV in Humanitarian Emergencies, Ebola Crisis:
Ensuring Continuity of HIV Services (Oct. 2014), available at http://www.who.int/hiv/
pub/toolkits/ebola-hiv-brief-oct2014.pdf.
187. UN Women, Liberian Women Adopt New Strategies in Ebola Response, Huffington Post,
15 Oct. 2014, available at http://www.huffingtonpost.com/un-women/liberian-women-
adopt-new-_b_5990512.html.
Table 1.
International Treaties Acceded to, Signed, or Ratified by Guinea, Sierra Leone, and Liberia.
Treaty Liberia Sierra Leone Guinea
International Covenant on Ratified 22 Acceded to 23 Ratified 24

Civil and Political Rights September 2004 August 1996 January 1978
Ratified January 8, 2000
Acceded March 26, 2004
(December 16, 1966,
entered into force March
23, 1976)

International Covenant on Ratified 22 Acceded to 23 Ratified 24
Economic, Social and September 2004 August 1996 January 1978
Cultural Rights (December
16, 1966, entered into
force January 3, 1976)
Convention on the Acceded to 17 Ratified 11 Ratified 9

Elimination of All Forms July 1984 November 1988 August 1982
of Discrimination against
Women (December 18,
1979, entered into force
September 3, 1981)
Convention on the Rights Ratified 4 Ratified 18 Acceded 13

of the Child (November 20, June 1993 June 1990 July 1990
1989, entered into force
September 2, 1990)
African “Banjul” Charter Ratified 4 Ratified 21 Ratified 16

on Human and Peoples’ August 1982 September 1983 February 1982
Rights (June 27, 1981,
entered into force
October 21, 1986)
African Charter on the Signed 14 Ratified 13 Ratified 21

Rights and Welfare of the May 1992 May 2002 January 2000
Child (1990, entered into
force November 29, 1999)
Protocol to the African Ratified15 Signed 9 Ratified 17

Charter on Human and July 2008 December 2003 September 2012
Peoples’ on the Rights of
Women in Africa
(November 13, 2000,
entered into force
November 25, 2005)
Convention on the Rights Ratified 26 Ratified 4 Ratified 8

of Persons with Disabilities July 2012 October 2010 February 2008
(January 24, 2007, entered
into force on 3 May 2008)
a draft national strategy to address women’s empowerment was reframed in

the wake of Ebola. It uses the development-related setbacks wrought by the
disease to call for gender equality measures in all sectors.188
Nearly a quarter century passed between the United Nations’ first ac-
knowledgement of the gender implications of HIV in 1990189 and WHO’s
2014 designation of Ebola as a public health emergency of international con-
cern.190 During that time gender’s powerful influence not only within health
systems, but, significantly, outside them (in other sectors, in communities,
in families, and in relationships) became globally recognized. Preparing for
the next infectious disease crisis requires embracing past lessons more fully.
Thus far, the Zika response indicates that these lessons have yet to take hold.
Important debate continues about what should be been done differently
at the international, national, and local levels so as to avoid the next Ebola-
like tragedy.191 To that broader dialogue we add this: A human rights-based
approach, inclusive of a gender perspective, ought to underpin all policy
and programming interventions which aim to prevent and respond to Ebola,
to Zika, and to any public health crises. This must occur from the very be-
ginning—and persist with a tenacity greater than that of the disease itself.
188. National Policy on Women’s Empowerment and Gender Equality (on file with authors).
189 CEDAW General Recommendation No.15: Avoidance of Discrimination against Women
in National Strategies for the Prevention and Control of Acquired Immunodeficiency
Syndrome (AIDS), U.N. Committee on the Elimination of Discrimination Against Women
(CEDAW), U.N. Doc. A/45/38 (1990).
190. WHO, Statement on the 1st Meeting of the IHR Emergency Committee on the 2014
Ebola Outbreak in West Africa, WHO Media Centre, 8 Aug. 2014, available at http://
www.who.int/mediacentre/news/statements/2014/ebola-20140808/en/.
191. Gostin & Friedman, supra note 111.

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Human Rights, Gender, and Infectious Disease: From HIV/AIDS

Lara Stemple, Portia Karegeya, Sofia Gruskin

Published by Johns Hopkins University Press

For additional information about this article

[ Access provided at 10 Apr 2020 06:32 GMT with no institutional affiliation ]

Human Rights, Gender, and Infectious

Lara Stemple,* Portia Karegeya** & Sofia Gruskin***

underpin all interventions from the outset, so as to more effectively respond

In September 2014, the UN Security Council responded to a health crisis for

4. Convention on the Elimination of All Forms of Discrimination Against Women, adopted

vulnerability has been established.11 In the meantime we offer a preliminary

influence employment, educational, and financial opportunities available

16. UNAIDS, Global Aids Update 2016 (2016), available at http://www.unaids.org/sites/default/

We now turn to concrete examples from the three most Ebola-affected

III. PERSONAL & COMMUNITY LEVEL CONTEXTS

A. The Caregiving Burden at Home

31. Aniekwu, supra note 13, at 31.

in infections reported among women.36 One report suggests that gendered

circumstances can be particularly acute,46 and a lack of training and support

Disease exposure during sexual intercourse implicates questions of gender,

the instruments but well articulated by NGOs working on masculinity, are

C. Female Genital Mutilation (FGM)

In Guinea, early marriage remains a pervasive violation of girls’ human

IV. PUBLIC HEALTH SYSTEMS PRACTICES

106. CEDAW, supra note 4, ¶ 12, 16, 19, 24.

A. Maternal and Other Reproductive Care

112. Menéndez, supra note 11.

the resource demands of HIV ought to be in competition with other needed

B. AIDS Treatment and Other Health Services

dangerous increase in vaccine-preventable diseases with disproportionate

Healthcare systems run on the labor of healthcare workers who comprise a

In previous Ebola outbreaks, the lack of protective equipment meant

V. OTHER ECONOMIC AND CULTURAL IMPACTS

162. Hewlett & Hewlett, supra note 88, at 90.

often on a voluntary basis.168 Patients often preferred this model, and in

could disrupt important work by affected countries to promote universal

VI. CONCLUSION AND WAYS FORWARD

forward? In addition to the range of human rights instruments referenced

182. WHO 2007, supra note 12, at 2.

Treaty Liberia Sierra Leone Guinea

International Covenant on Ratified 22 Acceded to 23 Ratified 24

Convention on the Acceded to 17 Ratified 11 Ratified 9

Convention on the Rights Ratified 4 Ratified 18 Acceded 13

African “Banjul” Charter Ratified 4 Ratified 21 Ratified 16

African Charter on the Signed 14 Ratified 13 Ratified 21

Protocol to the African Ratified15 Signed 9 Ratified 17

Convention on the Rights Ratified 26 Ratified 4 Ratified 8

a draft national strategy to address women’s empowerment was reframed in

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Lara Stemple,* Portia Karegeya & Sofia Gruskin*