THE UNCOUNTED

Politics of Data in Global Health

Sara L. M. Davis
Graduate Institute of International and Development Studies, Geneva
CONTENTS

List of Figures page vi

List of Tables vii
List of Abbreviations and Terms viii

1 Contested Indicators 1
2 The Uncounted: Key Populations 45
3 “Something More than Data” 65
4 Cost-Effectiveness and Human Rights 94
5 Modeling the End of AIDS 115
6 Sustainability, Transition, and Crisis 140
7 Listening to Women 173
8 “So Many Hurdles Just to Leave the House” 198
9 The Panopticon and the Potemkin 215
10 Data from the Ground Up 234
Reflection Questions 246

Acknowledgments 248
References 251
Index 296

v
C H A P T E R 1

C O N T E S T E D IN D I C A T O R S

Health service conditions in Venezuela are deplorable. . . .

Hospitalization areas without running water, fully contaminated surgery
rooms, not enough anesthesia to treat the wounded. Several thousand
people with HIV are now without antiretroviral treatment.
(Red Venezolana de Gente Positiva [RVG+] 2016, 1)
In June 2016 a network of people living with HIV in the Bolivarian
Republic of Venezuela wrote to the Global Fund to Fight AIDS, TB and
Malaria in Geneva, Switzerland, to appeal for urgent help.
Like other global and national HIV agencies, the Global Fund was
established in the early 2000s, in a rapid response to international
grassroots mobilization: people living with HIV and those affected by
TB and malaria, who came together to march and tirelessly advocate for
their right to health. Many were dying because they could not afford
life-saving treatment. Early on, this movement won powerful allies,
such as United Nations Secretary-General Kofi Annan. He told
a summit of African leaders: “AIDS has become not only the primary
cause of death on this continent, but our biggest development
challenge. . . . Somehow we have to bring about a quantum leap in
the scale of resources available” (Secretary-General 2001).
The Global Fund launched the following year as an international
“war chest,” pooling funds from wealthy countries and private founda-
tions, redistributing them to national health programs in need. The
Fund was small, flexible, and innovative; it held to principles of trans-
parency, partnership, performance-based funding, and country owner-
ship. Civil society and government champions made the rounds of

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CONTESTED INDICATORS

bilateral donors – in Washington, London, Berlin, Paris, Strasbourg,

Tokyo – and urged them to renew or increase their support. By 2016,
when the letter from Venezuela arrived at the glass tower near the
Geneva airport where the Fund then had its headquarters, the multi-
lateral agency was disbursing nearly $4 billion a year to more than 130
countries.
The letter, titled “VENEZUELA NEEDS YOUR URGENT HELP”
in all caps, depicted a stark catastrophe. The Venezuelan activists wrote
that their national currency had depreciated by 900 percent, inflation
was 700 percent, and they faced long supermarket lines for such basics
as rice or milk: “Literally, we are not only suffering hunger, we are also
dying, because our health system is totally collapsed” (RVG+ 2016, 2).
Their lives had been measured in decades, but now were counted in
years or months. They urged the Fund’s leaders to send antiretroviral
treatment – or at least, “Come to Venezuela immediately, come visit us
to assess with your own eyes and confirm that we are not exaggerating,
and that our suffering is real” (ibid.).
The Global Fund often receives appeals, but not usually from coun-
tries like Venezuela. The oil-rich country was a model of public health
in Latin America: it had largely eliminated malaria (Griffing, Villegas,
and Udhayakumar 2014). Venezuela had never been eligible for Global
Fund assistance.
The answer the Global Fund sent, seven months later, was a definite
no: “We regret to inform you that the current policy framework does
not allow the Global Fund to provide funding to Venezuela,” wrote
Board chair Norbert Hauser and executive director Mark Dybul. They
explained: “The Board is guided by its approved Eligibility Policy, which
annually determines the countries eligible for Global Fund funding.
Eligibility is determined by a country’s income level, measured by an
appropriate economic indicator of the World Bank, and official disease
burden data” (Hauser and Dybul 2017). Faced with a raw, desperate
appeal, the Fund had fallen back on a policy built on indicators – what
Sally Engle Merry (2011) calls the “tools of global governance.”
Activists posted the Global Fund’s letter online, and a wave of public
outrage followed. International AIDS activists feel a strong sense of
ownership of the Fund; some serve on its governance board. An online
petition, “Help people with HIV in Venezuela,” circulated on social
media. Within days more than a thousand people had signed.
Some activists said that the Global Fund had forgotten its mission.
The Global Network of People Living with HIV (GNP+) called on the

2
 CONTESTED INDICATORS

Fund to “live up to its mandate . . . and save lives” (GNP+ 2017). The
head of the AIDS Healthcare Foundation wrote a scathing open letter,
accusing the Fund’s managers of “deep ignorance or indifference to the
world events beyond the insular bubble of Geneva” (Business Wire
2017).
Were they indifferent? Several Global Fund managers were privately
stung by these accusations. The Fund had limited resources and multi-
ple crises to respond to, and could not fund everything. They were
following a strategy aligned with global goals. While the crisis in
Venezuela sparked fury from an empowered, vocal civil society,
Global Fund staff were working long hours on larger, older crises in
Africa, which drew less media interest.
A few international activists were unimpressed by this defense. They
speculated that bilateral donors on the Global Fund Board might be
working behind the scenes to block aid to Venezuela, an authoritarian
socialist state. One activist told me that among the reasons why the
Fund had found the country ineligible, “The main one that is usually
not explicit, just implicit, is the political consideration by donors [to
the Fund] that they don’t like a country with a government like
Venezuela receiving international aid.”
But the Global Fund Secretariat in Geneva insisted that it was
following policies approved by its Board – a Board whose voting
members happened to include some of the very civil society organiza-
tions now denouncing the agency in the press. The debate wore on like
this for two years.
The Venezuela controversy points to a larger problem – one with no
easy solution. The global HIV response has received more funding than
almost any other disease in the world. It is not enough. Tough choices
must be made: in the race to end AIDS, some people will win and some
will lose. Globally and locally, HIV traces the vectors of inequality; the
valleys and hills of a landscape scarred by centuries of colonialism,
discrimination, and domination. But where the funding goes, in the
end – who lives or dies – comes down to data.
A massive effort to scale up HIV treatment access to meet ambitious
global goals, goals that were developed using mathematical models, is
running into problems created by messy, on-the-ground realities, and
increasing the pressure on donor agencies. As discussed below, the
world committed in 2016 to “ending AIDS” by 2030. Funds are limited,
and agencies like the Global Fund must demonstrate clear, measurable
progress to the public in order to replenish their funds. Data has become

3
CONTESTED INDICATORS

key to measuring and communicating this success, as part of the global

rise of “audit culture” (Strathern 2000).
Thus donors and governments try to set objectives and indicators,
and monitor progress with quantitative data. But the indicators used to
make decisions are relatively blunt instruments, in comparison with the
complex environments in which HIV thrives; and the data is plagued
with holes. As we will see, both what agencies measure and how they
measure it are problems actively contested and debated – in many ways,
the global HIV response is at the early stages of a steep learning curve in
this regard. At every level, there are people and realities that are left
unprioritized and uncounted.
The Venezuela controversy highlighted some of these quantitative
cracks in the global health aid architecture. As it happened, it also
ratcheted up pressure on the Global Fund just at the moment when the
institution was about to revise some of its indicators. I had the oppor-
tunity to observe and contribute to this process, as a consultant advising
civil society activists on the agency’s Board.
This book draws on interviews with leaders in the global HIV
response; analysis of global health tools, budgets, and policies; and
ethnographic field research, to explore the ways that data and indica-
tors in global health are selected and constructed, and what they
sometimes fail to capture. A good example of this is the often-
debated in Global Fund Eligibility Policy.
As the Fund’s leadership wrote in their reply to Venezuelan activists,
the Board had approved an Eligibility Policy to focus resources and
intensive efforts in order “to achieve maximum impact in the countries
and regions with the highest burden of disease and the least economic
capacity to respond” – especially, in Sub-Saharan Africa (Hauser and
Dybul 2017; The Global Fund 2016). The policy aligned with existing
overseas development aid criteria used by many bilateral donors that
contribute to the Global Fund and sit on its Board.
First, the Global Fund assesses countries’ “economic capacity to
respond” to health needs using Gross National Income per capita
(GNIpc). But as GNIpc is one number calculated once a year, it does
not capture many economic factors or reflect any fast-moving crises.
The World Bank uses this indicator to classify countries as low-income,
middle-income, or high-income (discussed in more detail in chapter
six). When Venezuelan activists wrote to the Global Fund to appeal for
aid in 2016, Venezuela’s GNIpc was $13,080, and the World Bank
classified it as “high-income.” While activists lobbied and the Board

4
 CONTESTED INDICATORS

debated what to do, hyperinflation and plunging oil prices worsened the
crisis, and the country’s income plummeted. The next year Venezuela
was an “upper-middle-income country.”
A country may appear middle-income on paper, as Venezuela still
did in the midst of its collapse, but that national income is not likely to
be equally shared among a country’s yacht clubs and its shantytowns, or
to reflect poor health. Because GNIpc does not capture the complex-
ities of health, the Eligibility Policy also uses other indicators to sort
through the long list of countries classified as “middle-income.”
One of these is “disease burden”: the percentage of people currently
living with HIV in the general population, or the percentage living
with HIV among “key populations.” Key populations are groups whose
high-risk behaviors and social marginalization put them at higher risk
of HIV: as elaborated below, they include men who have sex with men,
people who inject drugs, people in prisons and other closed settings, sex
workers, and transgender people (WHO 2016, xii). Upper-middle-
income countries with a high enough level of HIV burden could still
be eligible for the Global Fund.
However, Venezuela lacked health data for purely political reasons.
First, all health data was censored. Venezuela’s president adamantly
denied there was any crisis for people living with HIV – or indeed, that
anything was wrong with the health system at all – and refused any
overseas assistance. He forbade publication of official information that
might contradict this sunny picture of good health.
It was difficult to hide the catastrophe. Venezuelan physicians and
civil society activists gathered their own data, and despite frequent
electricity blackouts and the risk of government retaliation, they found
ways to send the information to international allies. A report from
Human Rights Watch (2016a) drew on this to reveal staggering hospi-
tal shortages: aspirin, antibiotics, and first aid supplies. Journalists
smuggled out videos and interviews showing “cascading medical crises”
in hospitals (Faiola 2016). But when the Ministry of Health published
suppressed government reports that showed an alarming rise in infant
and maternal mortality, the president fired the health minister (BBC
2017).
The Global Fund relies on official health data, reported by national
authorities to the UN, to determine eligibility. It did not use informa-
tion from advocacy groups like Human Rights Watch. The Joint UN
Programme on HIV and AIDS (UNAIDS) was established in 1996 to
coordinate and support the global HIV response across UN agencies

5
CONTESTED INDICATORS

and member states. UNAIDS gathers data on HIV from countries on

a regular basis, verifies wherever it can, and shares this official data with
the Fund for decision-making purposes. But because of official censor-
ship, the most recent data UNAIDS had on HIV in Venezuela was
years out of date.
Experts at UNAIDS told me that they believed Venezuela probably
had high rates of HIV transmission among men who have sex with men,
like neighboring countries in the region. If they could have proven this,
Venezuela would have been eligible. However, homosexuality and
nonconforming gender identities are highly stigmatized in Venezuela,
so official national data on men who have sex with men simply did not
exist. When countries had no data on HIV among key populations, the
Fund’s policy was to treat this lack of data as a zero.
International activists lobbying for aid to Venezuela found peer-
reviewed studies showing soaring HIV prevalence among the indigen-
ous Warao people and shared these with the Global Fund. But the Fund
policy was to determine eligibility based on HIV prevalence among the
five “key populations” officially recognized by the World Health
Organization (WHO) and UNAIDS; indigenous people were not
a recognized “key population” (International Council of AIDS
Service Organizations [ICASO] and Accion Ciudadana Contra el
SIDA [ACCSI] 2018, 24).
Venezuelan people living with HIV were caught in a policy vortex
created by numbers and the absence of numbers. All the official data
they needed to be eligible for medical aid was out of date, censored,
missing, or about the wrong people.
The Venezuelan activists and their international allies were not so
easily discouraged. From 2016 to 2018, they published reports, wrote
letters, protested, and briefed delegations on the Global Fund Board (as
a consultant, I contributed to one report and supported the Developing
Country Nongovernmental Organization [NGO] Delegation to the
Global Fund Board in researching and drafting their position). In
May 2017, the Global Fund Secretariat drafted a decision for the
Board to consider on funding for Venezuela. With the Eligibility Policy
and key disease strategies in alignment, and the government continu-
ing to deny that it needed aid, it was no surprise that this proposed
decision was voted down. Even if an exception to the policy were to be
made for Venezuela, some argued, there was not much excess money
sitting around unallocated: it had all been promised to other countries.
However, acknowledging that the current policy framework would not

6
 AMBITIOUS GLOBAL GOALS

support the flexibility it needed to respond to crises in ineligible

countries, the Board also directed a working group to tackle the pro-
blem (Global Fund 2017).
Finally, in May 2018, nearly two years after the letter arrived in
Geneva, the Board approved a policy on “Non-Eligible Countries in
Crisis,” which resulted in a commitment to send US$5 million in
antiretroviral treatment to Venezuela (The Global Fund 2018). The
Board vote was unanimous, with a standing ovation. This small victory
for activism over indicators was another example of what makes the
global HIV response unique: numbers are powerful, but advocacy is
encoded in its DNA.
*
After over a decade of growth, the global HIV response is at a turning
point, with billions of dollars and millions of lives at stake. Ambitious
global goals, combined with increasingly limited resources, have cre-
ated a drive for data to make decisions and measure progress. While
there has been real progress, the world is not on track to reach the
targets set for 2030. To understand the politics shaping the pressure for
data discussed throughout this book, this chapter will give an overview
to these political and economic forces, and show how indicators used to
measure progress are contested and debated.
A broader literature, discussed later in this chapter, has critiqued the
power of indicators used in global governance. This book builds on that
work, and also argues that some critics may have missed the fluidity and
rapid evolution of these tools, as well as the role played by civil society
and community representatives in contesting data and indicators at
both grassroots levels and the highest levels of global governance. That
unique role, and the experience of trying to navigate politics of quanti-
fication in the HIV response, may offer lessons for broader considera-
tion in other areas of global health.

AMBITIOUS GLOBAL GOALS: THE END OF HIV

In approving the Sustainable Development Goals (SDGs) in 2016, the
UN General Assembly committed to “end the AIDS epidemic” by 2030
(General Assembly resolution 70/1, 16). They also resolved, “As we
embark on this great collective journey, we pledge that no one shall be
left behind” (ibid., 2). Committing to “ending AIDS” was ambitious,
and more ambitious than the previous Millennium Development Goal

7
CONTESTED INDICATORS

EMPHASIZING VIRAL SUPPRESSION AMONG PEOPLE

LIVING WITH HIV

90% 90% 90%

of people living with HIV

of people living with HIV who know their status are of people on treatment
know their status on treatment are virally suppressed

Figure 1.1 90-90-90 targets. Credit: UNAIDS

(MDG) had been, but mathematical models had shown persuasively

that it was feasible.
With the endorsement of the UN General Assembly, UNAIDS was
tasked with developing a strategy that could achieve the goal. They
presented the resulting “Fast-Track approach” to cosponsoring UN
agencies and member states, and this was also approved by the
General Assembly the following year (UNAIDS 2016; General
Assembly resolution 70/266).
The Fast-Track approach has been the strategy followed by global
HIV agencies and donors since 2016. It is an approach that encourages
national HIV programs to focus on the locations and populations most
affected by HIV, in order to achieve the greatest possible impact. They
set out a long list of and targets, including targets for eliminating gender
inequality violence, targets for ending HIV-related discrimination, and
more (UNAIDS 2016, 2–4). The central set of testing and treatment
targets UNAIDS set for the year 2020 are known as “90-90-90,” and
most funding and programming homed in on that goal (see Figure 1.1).
The 90-90-90 targets built on the “HIV treatment cascade”: a series
of successive stages highlighting what proportion of individuals are
engaged in each stage (Gardner et al. 2011). By 2020, these targets
were:
• 90 percent of all people living with HIV are tested and know their
HIV status

8
 AMBITIOUS GLOBAL GOALS

• 90 percent of all people with diagnosed HIV infection receive

sustained antiretroviral therapy, and
• 90 percent of all people receiving antiretroviral therapy have viral
suppression (UNAIDS 2017).
The logic behind the “end of AIDS” slogan and the 90-90-90 targets
can sometimes create confusion, so it may be helpful to briefly explain it
before going further. While HIV is rarely discussed in media at the
moment, it remains widespread among key populations everywhere and
in the general population in some high-prevalence countries. An
estimated 37.9 million people are living with HIV globally in 2019.
Fewer than half, or approximately 23.3 million, are on antiretroviral
treatment (UNAIDS 2019a, 6). Each year, more people newly contract
the virus.
The end of AIDS was not a campaign to eradicate the virus.
Epidemiologists talk about disease control when transmission is
reduced; elimination when transmission is halted in a specific geo-
graphic area, such as a country; and eradication when the disease is
permanently reduced to zero cases.
Without a cure, eradication of HIV is only a distant dream, and no
country – not even wealthy countries with robust health systems – has
yet achieved HIV elimination. In fact, WHO does not currently have
a process to validate that a country has achieved HIV elimination, as it
does for other epidemics (WHO 2018).1 If HIV elimination were
within reach anywhere, a validation process would surely exist.
However, control of HIV (i.e., sharply reducing transmission) is an
achievable goal. People diagnosed with HIV infection who sustain
antiretroviral therapy for long enough can live long and healthy lives
and can reduce their viral load (the amount of HIV in the bloodstream)
to the point where the virus is undetectable. People with undetectable
viral load cannot transmit HIV to others: as the slogan goes, “U=U,”
undetectable = untrasmittable.
As discussed further in Chapter 5, infectious disease models created
by researchers in the 2010s predicted that a rapid, unprecedented global
scale-up of antiretroviral treatment, scale-up to the 90-90-90 targets,
could trigger a phase change that would sharply reduce HIV transmis-
sion in countries where prevalence was high in the general population,
such as India or Uganda.
1
The WHO does validate that countries have eliminated mother-to-child transmission of HIV
and syphilis.

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CONTESTED INDICATORS

The critical step was, of course, the first 90 of the 90-90-90 targets:
estimating an accurate baseline number of people living with HIV in
each country, and then persuading 90 percent of them to take the HIV
test and know their status. Unless this target was reached, the rest of the
treatment cascade would fall far short of the end of HIV. Ninety percent
of a handful of people is failure.
This was the logic behind the Fast-Track approach. The race to
reach the 90-90-90 targets was on, and the prestige would be greatest
for those who reached the targets first. UNAIDS sets Global AIDS
Monitoring indicators, based on the global targets, which governments
report on annually with data gathered from health facilities (UNAIDS
2019).2 UNAIDS reviews and posts the resulting data online.
In July 2017, UNAIDS reported that seven countries had achieved
90-90-90: Botswana, Cambodia, Denmark, Iceland, Singapore,
Sweden, and the United Kingdom (UNAIDS 2017, 10). In sharing
this news, UNAIDS executive director Michel Sidibé wrote, “When
I launched the 90–90–90 targets three years ago, many people thought
they were impossible to reach. Today, the story is very different. . . .
I remain optimistic” (UNAIDS 2017, 6).
By 2019, the story was less optimistic. Sidibé had resigned from
UNAIDS under a cloud, and updated data had reduced the list of
countries to six. Botswana and the UK had reached 90-90-90 and
remained there; Cambodia, Iceland, Singapore, and Sweden were off
the list after UNAIDS’ review of their updated data; while Eswatini,
Namibia, and the Netherlands were newly listed as having reached 90-
90-90 (UNAIDS 2019a, 82). By the time this book is published, it will
probably be clear that most of the world has not reached the 90-90-90
targets.
However, in 2016, with the deadline of 2020 not far away, coun-
tries with high rates of HIV were under pressure to reach the targets.
It is not new for public health to rely heavily on quantitative data,
and the current historical moment is one in which many actors are
exponentially increasing the quantity and granularity of data-
gathering for private purposes (Adams 2016; O’Neill 2019; Zuboff
2016). But the 90-90-90 targets created an even more urgent drive
for data on HIV for countries, and for donors financing national HIV
programs.

2
Previously, UNAIDS used a similar system called the Global AIDS Response Progress Reports,
or GARPR.

10
 DECLINING GLOBAL FUNDS

DECLINING GLOBAL FUNDS

With the General Assembly approval of the Fast-Track approach,
UNAIDS began to work with modelers again, this time to estimate
the cost of the strategy. The numbers quickly became concerning.
Here, in order to understand the pressures that donors put on aid
recipients, it may be useful to also consider the pressures donors face
themselves. The global HIV response has created a system of transnational
financial flows among institutions, and as a result, most donors have their
own donors to appease, resulting in some fluctuation in funding.
UNAIDS had designed the Fast-Track approach at a peak of global
HIV funding in 2013–14. In 2016 UNAIDS estimated that rapid scale-
up of the interventions needed to implement the Fast-Track approach
would cost US$7.4 billion each year in low-income countries,
$8.2 billion in lower-middle-income countries, and $10.5 billion in
upper-middle income countries: a total of $26.1 billion a year (Stover
et al. 2016; UNAIDS 2016a). (Since their main audience was bilateral
donors, they did not estimate the cost in high-income countries.)
This estimated cost would leave a projected shortfall of about
$6 billion per year (UNAIDS 2016a, 8). Where would the world find
$30 billion between 2015 and 2020?
UNAIDS suggested that lower-middle income countries could
increase their share of domestic financing and become more self-
sufficient (UNAIDS 2016a, 11). Matt Kavanagh, at the international
advocacy organization HealthGap, called this “magical thinking” by
UNAIDS (2016). It assumed, he said, that in the next five years, low-
income countries could increase domestic funding by 450 percent,
while lower-middle income countries would increase domestic funding
by 530 percent. Meanwhile, he pointed out, donor countries were only
being asked to increase their contribution by 31 percent.
The US, UK, and European countries, among others, had been
bankrolling the global HIV response for decades. Their support had
risen in the early 2000s, dipped after the 2008 global economic down-
turn, and had begun to rebound in 2013–14. By “ending AIDS”
through one last massive push, they could also end, or at least reduce,
that funding obligation. The funds saved once HIV was under control
could be applied to other urgent problems, including some closer to
home. The idea of “one big push” to end AIDS was appealing.
However, just as the bill to make this last push was being discussed in
UNAIDS and donor countries, a tectonic political shift hit the two

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CONTESTED INDICATORS

leading donors. In June 2016, UK citizens voted to leave the European

Union. Five months later, the United States elected Donald Trump
president. At this moment of volatility, the public debate over external
aid reached fever pitch in the European Union, the United Kingdom,
and the United States. Growing xenophobia and preoccupation with
internal politics was increasing the reluctance of US and British citi-
zens to fund the needs of refugees, respond to climate change, end HIV,
and other external goals.
Development assistance for health flatlined and began to slip down-
ward again. From 2010 to 2018, HIV funding from donors other than
the United States declined by more than $1 billion (Kates et. al. 2019).
In 2018 alone, development assistance for health dropped 3.3 percent
globally (IHME 2019, 14; OECD 2019). The future trends were grim,
with growing uncertainty about the future of the British economy; in
his first years as president, President Trump proposed sweeping cuts to
the Global Fund. These cuts were resisted by Congress, but the threat
remained real (Friends of the Global Fight 2019).
As the largest bilateral HIV program, the largest donor to the Global
Fund, and the largest donor to UNAIDS and WHO, the US role in the
global HIV response was decisive. Anxiety over its future role has been
exacerbated in part by the steady decline in European bilateral aid for
HIV. The UK and France are the second-largest donors. Smaller
bilateral funders, such as Japan, Germany, the Netherlands, the
Scandinavian countries, and multilateral financing mechanisms such
as the Robert Carr Fund for Civil Society Networks have all played
their role. But none of these would fill the gap if the US or UK ended or
sharply reduced their support. International organizations have pushed
for and successfully persuaded implementing countries to increase their
share of domestic co-financing, but not enough to compensate for
decreasing external aid (see Figure 1.2).
Thus, for the United States and United Kingdom, retaining the
strong support of Congress and Parliament was critical to the reauthor-
ization of budgets. Their bilateral HIV programs and the Global Fund
all needed to clearly communicate, both to the public and to legislators,
that the HIV response was an unambiguously sound investment, that it
was saving lives, and also that it would not last forever: one last big push
could bring the end of AIDS.
The Fast-Track approach implied that one day there could be an end
to donor AIDS fatigue. But to get there, donors would need to husband
their shrinking resources and make every dollar or pound count.

12
 RESOURCE AVAILABILITY IN DANGER OF FALLING SHORT OF GLOBAL COMMITMENTS
30

25

20
US$ (billion)
15

10

0
06

07

08

09

10

11

12

13

14

15

16

18

19

20
20

20

20

20

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20

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20
Domestic (public and private) United States (bilateral) Resource needs (Fast-Track)
Global Fund to Fight AIDS, Other international
Tuberculosis and Malaria

HIV RESOURCE AVAILABILITY BY SOURCE, 2006–2016, AND PROJECTED RESOURCE NEEDS BY 2020, LOW- AND MIDDLE-
INCOME COUNTRIES*

Figure 1.2 Estimated resources needed for the Fast-Track approach. Credit: UNAIDS
CONTESTED INDICATORS

TARGETING LOCATIONS AND POPULATIONS

The combination of ambitious global goals, shrinking resources, and
the Fast-Track focus on impact created a change in the conversation
about HIV in 2013–18. Leaders in the HIV sector began talk more
frequently about the need to be “strategic” and to “maximize impact.”
Countries and organizations were told to pare down unnecessary expen-
ditures, use evidence-based interventions, and demonstrate rapid pro-
gress toward 90-90-90. The language and thinking of cost-effectiveness
began to dominate, especially in high-prevalence countries.
This focus had a logical rationale grounded in business strategy. As
UNAIDS Strategic Information director Peter Ghys said in our inter-
view in July 2019:
Currently there’s about 7.7 million people living with HIV in South Africa,
so it makes a lot of sense that you have to at least address that. Otherwise,
how will you address the world, which has five times more people living
with HIV? If you just focus on countries that have small numbers of people
living with HIV, you will have some effect – but if you have that effect in
small numbers, you don’t really affect the global epidemic.
The US President’s Emergency Plan for AIDS Relief (PEPFAR) per-
haps best exemplifies this strategic approach to prioritization. As noted
above, PEPFAR is the largest bilateral funder for HIV and the largest
donor to the Global Fund. It is based in the US Department of State,
where it coordinates the work of seven US government agencies and
departments. Its 2017 budget of $6.75 billion included $1.35 billion to
the Global Fund, and over $5.2 billion for bilateral HIV programs
(PEPFAR 2016). As Congress prepares to approve PEPFAR’s budget
each year, the global HIV response goes through repeated bouts of
anxiety, with insiders swapping rumors in private and tweeting out
encouragement in public as they wait for news.
The amount is not usually in suspense, unfortunately: while other
global HIV funders have reduced their contributions, PEPFAR’s budget
has stayed flat for a decade. At times in the past, PEPFAR has worked in
up to fifty countries: today, it focuses those funds on just thirteen high-
prevalence countries. Figure 1.3 shows a map with country size depicted
relative to the estimated number of people living with HIV in each. It
depicts the rationale behind the agency’s focus on Sub-Saharan Africa,
while increasingly divesting from, or “transitioning out of,” many low-
prevalence middle-income countries in Eastern Europe, Central Asia,
Asia and the Pacific, and Latin America and the Caribbean.

14
Figure 1.3 World map based on HIV prevalence Credit: U.S. President’s Emergency Plan for AIDS Relief (PEPFAR)
CONTESTED INDICATORS

I interviewed Ambassador Deborah Birx, the US Global AIDS

Coordinator who heads PEPFAR, by phone in July 2019, and asked
her about this focus. She said: “Honestly, we don’t have unlimited
resources. Obviously we’ve had the same budget since 2009, but the
epidemic has grown significantly since 2009 – because we’ve kept
people alive, and that’s terrific. But the needs, and the different equi-
table needs, have really dramatically changed.”
A senior US official working with PEPFAR, who requested anonym-
ity because they were not authorized to speak on behalf of the agency,
agreed: “You can’t dispute that with declining resources, we must focus
on impact. The fact is that we know there are hundreds of thousands of
people not accessing treatment because we don’t have enough money.”
To implement the Fast-Track approach, attention was focusing now on
just reaching 90-90-90 in a subset of countries in Sub-Saharan Africa.
These countries would simultaneously cut costs, focus efforts, and find
all those estimated to be living with HIV, scaling up treatment rapidly.
Targeting services where they were needed most, in this way, would
in fact deliver greater impact than would addressing HIV uniformly
across the general population. For example, countries could focus on
locations: using epidemiological data to produce heat maps that
showed where the epidemic was concentrated, national health plan-
ners could better position clinics and hospitals in HIV “hotspots,”
where they were needed (see Figure 1.4). As Figure 1.4 shows, clinics
and hospitals have sometimes not been sited in locations where they
are needed most.
However, HIV is not solely transmitted based on location: behaviors
increase the risk. HIV transmission was highest in some countries
among adolescent girls and young women, and in all countries, it was
high among key populations. Thus, the UNAIDS-Lancet Commission
argued, HIV programs needed to not just be sited in the right places;
they also needed to be “tailored to the needs and contexts of specific
populations” (Piot et al. 2015).
What did that mean in practice? Here the role of UN organizations
was needed. While the Global Fund, bilateral HIV programs, and
private foundations such as the Bill and Melinda Gates Foundation
invest in interventions and programs, UN agencies do not, generally,
act as major donors. The role of WHO and some other health programs
at UN agencies is to review the best available scientific evidence,
consult with experts, develop normative guidelines, and advise coun-
tries on how to apply them in practice. WHO and UNAIDS set out to

16
Figure 1.4 Estimated HIV prevalence in Eastern Cape, South Africa, 2014. Credit: Health Policy Project
CONTESTED INDICATORS

do this for programs for key populations. They reviewed scientific

evidence and consulted with global civil society representatives to
produce Consolidated Guidelines on HIV Prevention, Diagnosis,
Treatment and Care for Key Populations (2016), which set out the
definitive groups to focus on and the services they needed to combat
HIV.
Key populations, they concluded, were “defined groups who, due to
specific higher-risk behaviours, are at increased risk of HIV irrespective
of the epidemic type or local context. Also, they often have legal and
social issues related to their behaviours that increase their vulnerability
to HIV” (WHO 2016, xii).
As noted above, WHO identified five groups as key populations:
• Men who have sex with men, a term that includes men who identify as
gay, as well as men who also have sexual relationships with women;
this population faces high risk of HIV, as well as criminalization and
stigma in many countries (Beyrer et al. 2012).
• People who use drugs: Rates of HIV infection are similarly high among
people who use drugs, particularly those who share needles. One in
eight people who inject drugs are believed to be living with HIV
(UNAIDS 2019b, 9–11). People who use drugs also face higher risks
of hepatitis B and C and tuberculosis, and higher rates of violence;
most countries criminalize drug use and possession (ibid.).
• Sex workers: Sex workers also face high risk of HIV. Male and female
sex workers in all their diversity face stigma, discrimination, and
police abuse, as well as the threat of violence from clients and others
(Baral 2015; Sluggett 2012; Sukthankar 2011). While condoms are
essential in HIV prevention, many courts use condoms as evidence
in criminal charges of prostitution, undermining public health
efforts (Overs and Loff 2013; Shen and Csete 2017; Shields 2012).
• Transgender people: Transgender people, whose assigned sex at birth
differs from their gender identity or expression, face extremely high
rates of HIV: an estimated 19 percent of transgender women are living
with HIV (UNAIDS 2014, 3). Reviews of studies have found that
stigma and discrimination were also determinants of poor health for
transgender people, and that they are in urgent need of prevention,
treatment, and care services (Baral et al. 2013; Reisner et al. 2016).
• People in prisons and other closed settings: Among the tens of millions
of people in detention or incarceration, HIV prevalence is estimated
to be “twice to ten times higher than in the general population,” and

18
 TARGETING LOCATIONS AND POPULATIONS

it is fueled by widespread sexual violence, drug use, stigma and

discrimination, and lack of access to condoms or clean needles
(WHO 2016, 5). Due to criminalization, many of the other key
populations are also incarcerated at some point in their lives, exacer-
bating their risk.
To address the needs of these five key populations, WHO recom-
mended countries adopt a specific package of health interventions.
These included HIV prevention; harm reduction services, such as
needle-syringe programs and drug dependence treatment including
opioid substitution therapy (OST), for people who use drugs; HIV
testing and counseling; HIV treatment and care; prevention and man-
agement of co-infections and co-morbidities; and sexual and reproduc-
tive health services (WHO 2016, 3).
In addition, in a breakthrough, WHO also recommended that
countries reform laws, by decriminalizing “behaviors such as drug
use/injecting, sex work, same-sex activity and non-conforming gen-
der identity and toward elimination of the unjust application of civil
law and regulations against people who use/inject drugs, sex workers,
men who have sex with men and transgender people” (WHO
2016, 5).
Decriminalization is distinct from legalization. With legalization,
a country develops laws and policies to regulate a certain behavior. In
decriminalization, the country simply eliminates any legal penalties. As
discussed in Chapter 2, people who use drugs, sex workers, and sexual
and gender minorities have long called for decriminalization, because it
removes the state, especially police, from intrusive management of
their lives – management that often results in abuses.
With publication of these guidelines, from the global level down to
the local level, the focus of donors and implementers under the Fast-
Track approach was now clearly aligned. The SDGs had called for no
one to be left behind, and if this approach were followed as planned, no
one should be. High-prevalence, developing countries were the focus of
donor efforts and of technical support by UN agencies. These countries
were encouraged to review their epidemiological data, map hotspots,
and develop “investment cases,” setting out the strategy they would use
to achieve maximum impact with limited funds. They would develop
these investment cases, where needed, with support from technical
assistance providers using cost-effectiveness software to recommend
the optimal mix of interventions to achieve these goals.

19
CONTESTED INDICATORS

As for the other countries that were middle-income or upper-

income and had epidemics largely concentrated among key popula-
tions, the thinking was that these countries could now afford to
manage their own HIV programs. They would presumably develop
the “political will,” as was often said in Geneva, and do what was
needed to fulfill the global plans that they had also endorsed in the
General Assembly.
Venezuela was not on this mental map of global health, as it is
literally not on the PEPFAR map, above.3 But this is natural, because
the nature of setting global goals and a global strategy is to make
difficult choices: it means setting priorities, which means choosing to
deprioritize some things. To develop a strategy means not only
deciding what to do, but also what not to do; to find the balance
between the things that count and the things that will be left
uncounted.
At the same time, the Fast-Track approach was not just a strategy,
but a communications tool. The “end of AIDS” was a story about the
future that would be compelling and persuade undecided people to care.
Bauman calls storytelling a “species of situated human communication”
whose meaning is shaped by external politics and social factors
(1977, 8). Certain kinds of public communications, he says, can be
compared to Plato’s “noble lie,” an inspiring myth about the Republic
that Socrates imagined could persuade diverse citizens to think of one
another as brothers, despite the reality of inequality (Bloom 1968, 93).
The Sustainable Development Goals perform this function in a period
of human history where inequality is widespread, setting aspirational
targets that tell a story about global unity meant to inspire our best
selves. To call the “end of AIDS” a noble lie is not to say that it was
immoral or dishonest. As a later chapter will show, the objectives were
arrived at honestly, and were aimed at inspiring people to care about
people living with HIV. But they were not well grounded in the messy
realities of inequality.
From the outset of the Fast-Track approach, civil society and com-
munity activists pointed out these ignoble truths, raising concerns
about the neglect of key populations in middle-income countries in
Eastern Europe and Central Asia, Latin America and the Caribbean,
the Middle East and North Africa, and Asia and the Pacific.

3
Although India and China both have large numbers of people living with HIV, neither is
depicted with proportionate size and shading on the map.

20
 ADVOCACY AND THE MIDDLE-INCOME COUNTRIES

CIVIL SOCIETY ADVOCACY AND THE MIDDLE-INCOME

COUNTRIES
As noted earlier, in the 1980s and 1990s, people living with HIV
mobilized internationally to demand treatment and services, and as
they were successful and the global response grew, some rose to senior
positions in the newly established institutions.
ACT-Up, a grassroots network of AIDS activists, was the first of
these groups to emerge in the United States, France, and in other
countries. Their advocacy explicitly rejected the stigma and AIDS
denialism in the public sphere, especially with the now-iconic sign
with a pink triangle that read “SILENCE = DEATH.” Activists
occupied public spaces, demanding faster action and more funding
and research. They also mastered technicalities of medical research
and approval, claiming seats in scientific bodies (Chan 2015; Epstein
1988).
People living with HIV built up outspoken national networks,
including in Sub-Saharan Africa. In the 2000s key populations also
began to mobilize transnational networks of gay men and other men
who have sex with men, transgender people, sex workers, and people
who use drugs. Global advocates representing these constituencies
fought for and successfully won seats in the governance of some
national coordination mechanisms and global HIV institutions.
UNAIDS codified this principle as a normative standard, “the
Greater Involvement of People living with HIV” (GIPA): the right
of people living with HIV “to self-determination and participation in
decision-making processes that affect their lives” (UNAIDS 2007, 1).
The principle was incorporated into the International Guidelines on
HIV and Human Rights (UN Office of the High Commissioner for
Human Rights and UNAIDS 2006, para. 5). The Global Fund also
urged countries, with mixed success, to include roles for these con-
stituencies in national multistakeholder committees managing
Global Fund finances. Here, it is important to note the distinction
that some global HIV governance agencies make between commu-
nities and civil societies: community representatives are those who are
directly affected by HIV, either because they are living with HIV or
are key populations at risk of HIV. Civil society representatives speak
for civil society organizations, which can include NGOs, hospitals, or
academic institutions, but they are not necessarily representatives of
communities.

21
CONTESTED INDICATORS

As the global HIV response has rapidly scaled up, civil society
and community representatives have become both insiders and
outsiders: consulting on national HIV strategic plans, proposing
and approving funding plans, monitoring progress, implementing
national and regional programs, and sometimes all of the above. As
Biehl noted at an earlier stage of the epidemic, scale-up has
produced “unlikely coalitions that both expose the inadequacies
of reigning public health paradigms and act to reform, if to
a limited extent, global values and mechanisms (of drug pricing
and of types of medical and philanthropic interventions, for exam-
ple)” (2007, 1083). The scale-up of the global HIV response can
also reconfigure local prestige and power relationships in proble-
matic ways, creating conflicts of interest and misuses of power that
have been explored in academic literature (Kapilashrami and
O’Brien 2012; Nguyen 2010; Qureshi 2018).
However, the role activists play in global health governance has
been less studied. Advocates like those quoted throughout this
book now occupy seats in the highest levels of governance. Seated
alongside health ministers, ambassadors, and other senior man-
agers, they also contribute to debates about priorities, implemen-
tation and accountability. Their public support for global HIV
finance programs gives those programs legitimacy, and if they
withdrew that support, donors would probably question continu-
ing support. When new bilateral donor commitments are made to
finance the global HIV response, these announcements are pre-
ceded by more than a year of strategizing and advocacy by inter-
national networks such as the Global Fund Advocates Network
(GFAN).
Many activists have raised increasingly urgent concerns about
the impact of donor withdrawal from middle-income countries.
When HIV donors transitioned out of middle-income countries in
order to focus more of their funding in high-prevalence countries
in Africa, the governments of middle-income countries rarely
stepped in to fill the gap. In fact, at the same high-level meeting
where UN member states voted support for the Fast-Track
approach, some blocked key populations-led groups from partici-
pating (Holpuch 2016). As Rico Gustav, executive director of the
Global Network of People Living with HIV and a delegate on the
Global Fund Board, has said, “Everyone talks about leaving no
one behind, but key populations were never there in the first

22
 ADVOCACY AND THE MIDDLE-INCOME COUNTRIES

place” (Davis and Villafranca 2019). Speaking at the UN, Gustav

called on states to “place the needs of the poorest and most
marginalized members of society at the start and center, and put
the last mile first” (GNP+ 2019).
Meanwhile, some have also noted that scale-up in Africa, while
resulting in significant progress in declining death rates, has triggered
other concerns about failure by some states to procure goods, hire staff,
and launch new programs to spend their larger allocations. In 2017
more than $1 billion of Global Fund financing was unspent due to poor
cash absorption (Green 2017).
The cost of transition from middle-income countries is becoming
clear. In 2019 UNAIDS reported that while rates of HIV were declin-
ing globally, more than half of new infections were among key popula-
tions and their partners (UNAIDS 2019a, 11). As Mike Podmore,
executive director of UK civil society network STOPAIDS and
a Global Fund Board Member, put it in our interview in May 2019:
“Some donors are willing to sacrifice progress in middle-income coun-
tries on the basis of focusing on high-burden, low-income countries,
because of the feeling that upper-middle-income countries should be
stepping up and doing it themselves. The challenge for us is that it’s not
morally acceptable just to leave key populations and other people living
with HIV to their fate.”
All sides of this debate over how best to allocate limited resources
have made compelling, rights-based arguments. As Peter Sands, the
executive director of the Global Fund, reflected when we spoke by
phone in July 2019: “You’ve got to be very thoughtful, because of
course, you’re not just thinking about the static cost of any one life
saved; you’re thinking about the broader implications for the epide-
miology in this situation.” Sands had only recently joined the Global
Fund. I asked him how these difficult decisions in global health
contrasted with the kinds of decisions he had had to make in his
previous role, as chief executive of Standard Chartered bank. He said,
“It’s easier in the business world, when you’re thinking about the
return on investment of doing X or Y, than it is in the global health
world; because the return on investment [in global health] is essen-
tially lives.”
Using “lives saved” to measure the results of the Fund’s investments
came back to the fundamental premise of the Fast-Track approach:
focus investments where they can have the maximum impact by
increasing enrollment on treatment. The rationale behind the Fast

23
CONTESTED INDICATORS

Track approach never explicitly told donors to withdraw money from

middle-income countries to invest in countries with high HIV preva-
lence, but as the funding shrank, many did so in order to achieve the
scenarios predicted by the Fast-Track approach and to try to reach
epidemic control as predicted by the mathematical models.
As the debate over middle-income countries highlights, the Fast-
Track approach, while it seemed clear and logical, left some critical
questions about prioritization and politics unresolved from the outset.
The 90-90-90 targets were intended to focus efforts and resources on
scaling up treatment, especially in high-burden countries. But while
this goal was laudable and logical, it did not address the risk that
stigmatized and criminalized key populations in other countries would
be left behind.
90-90-90 was a clear and easy-to-remember set of targets, and the
Eligibility Policy was written to make determining eligibility for HIV
financing clear and straightforward, but both these examples also high-
lights the ways in which indicators and targets can be slippery and
contested, especially when resources become tight. The next section
touches on a broader literature about this problem of indicators used in
global governance, before examining a few illustrative examples of
contested indicators at the Global Fund, and showing how these have
changed over time.

THE POLITICS OF INDICATORS

A growing literature on the use of indicators by anthropologists and
human rights scholars has highlighted concerns about the use of
indicators in global governance. Critics have shown how indicators
can take on the status of law in their operations, reinforcing unequal
postcolonial power relationships between global governance agencies
and developing countries (Davis and Kruse 2007; Escobar 1995; Merry
2011; Merry et al. 2015; Satterthwaite & Rosga 2008). Indicators are
abstractions that reduce complexity of phenomena to make them
visible and commensurable across diverse contexts (Bartl et al.
2019; Merry and Wood 2015; Winkler et. al. 2014). To do this,
indicators aggregate data in ways that are often distortive and create
oversimplified rank-ordering of complex phenomena (Davis et al.
2012, 73–75). The growing demand for indicators and data represents
a rapid expansion of mechanisms of transparency and measurement
(Riles 2013). Adams (2005) argued that global health indicators like

24
 THE POLITICS OF INDICATORS

these imposed external norms that were ill-suited to local specificities

and discouraged local programs from pragmatically tailoring their
approaches.
While I share these concerns, it is also important to remember how
new indicators are in global governance, and to note that as a result,
they are fluid, shifting in response to political and economic pressures.
One example of this is global measurement of gender-based violence.
For many years, this problem has been denied and ignored, minimized,
and deprioritized. Women’s rights advocates were unable to get an
indicator on this issue into the Millennium Development Goals, in
part because critics said it was too hard to measure (Anderson 2013;
Ellsberg 2006). When UN member states approved the SDGs in 2016,
they did at long last include indicator SDG 5.2: “Eliminate all forms of
violence against all women and girls in the public and private spheres,
including trafficking and sexual and other types of exploitation” (UN
General Assembly 2015). This was a triumph for survivors and others
who had fought to make this stigmatized and minimized violence visible.
But the problems of reporting on this indicator and of understanding the
data reported are complex. First, as will be discussed in more detail in
Chapter 7, few survivors report sexual and other forms of gender-based
violence, due in part to the risks of exposure and their lack of trust in
reporting mechanisms. Thus, as we will see, reported numbers on violence
against women generally represent only the tip of the iceberg (Merry 2016).
Second, the focus on violence against women can render other forms
of gender-based violence invisible: there is no SDG for violence against
men, for example, though men have been targeted with sexual violence
in conflicts as diverse as those in Uganda and Syria (Dolan 2014;
Chynoweth 2017). There is also no indicator capturing violence
against transgender or nonbinary people, who are also frequently vic-
tims. The invisibility of male and trans survivors discursively constructs
females as a priority in the indicator, but in ways that can reinforce
denialism, invisibility, and lack of services for victims of other genders.
Then there is the problem of how to understand a change in the data
reported on violence against women (Davis, Schopper, and Epps 2018;
Merry 2016). Does an increase in reported incidences of violence mean
that there are more actual incidences of violence, or does it indicate
that progress is being made because greater numbers of women feel safe
to report? On the other hand, how should a decrease in reported cases
be understood: does it mean that efforts to reduce violence are working,
or that they are failing, because fewer women feel safe to report?

25
CONTESTED INDICATORS

This is not to say that violence against women should not be tracked
with a global indicator, but this example is given in order to emphasize
the importance of context in shaping the meaning of a sign, like an
indicator, and to note that every time an indicator shines a light on an
issue, it casts a shadow on other areas that are not prioritized, raising
new questions.
For example, at the height of the #MeToo movement of 2017, as
the hashtag convened an international debate about sexual harass-
ment and sexual violence on social media, attention to the problem
of bullying and sexual harassment in international organizations
increased, highlighted by some visible scandals, including one at
UNAIDS (2018d). In March 2018, the United Nations tweeted
a link to a report showing that “special measures to end sexual
exploitation & abuse show progress,” with a drop in the number
of allegations from 165 to 148 (UN 2018). The responses to this on
Twitter included one from a women’s rights campaigner:
“Unfortunately, all this shows is a drop in reporting, not a drop in
incidents – they know this and this is a PR stunt” (Spencer 2018).
As this example of indicators on sexual and gender-based violence
shows, indicators and data used to promote accountability can
simultaneously reveal some hidden truths, hide other truths, and
raise a flag for a space in which there are intensified contests over
power.
To further illustrate the emergent nature of indicators, this time in
HIV finance, the following section shows how a few indicators used by
the Global Fund changed between two strategy periods and the differ-
ent work they did. It is important to underscore here that as the above
example showed, the Global Fund is far from unique in contending
with the problem of what to measure in monitoring its work. The Fund
convenes many diverse forces and actors, making it in some respects
a mirror reflecting the broader debates in the HIV sector. The section
below looks at a few of the KPIs set by the Board, but not at indicators
used by Secretariat managers to monitor progress internally or the
indicators used to monitor performance of grants. Chapter 9 will briefly
explore my attempts to design a KPI on human rights for the Global
Fund when I worked there, and the challenges this created in monitor-
ing compliance.
To set priorities and monitor progress, the Global Fund selects
indicators for priority areas. As Figure 1.5 illustrates, indicators name
the priority area to be monitored: for example, “number of people living

26
 THE GLOBAL FUND CORPORATE KPIS

1200
Population size
estimate:
1000 There are an
estimated 1,000 men
who have sex with
800 men in the country
Target:
By 2030, 90% of men
600 who have sex with
men, or 900 men,
will test for HIV and
400 know their status Data:
Currently, service
coverage is 40%: only
400 men who have
200
sex with men have
tested for HIV and
know their status.
0

Figure 1.5 Sample indicator, coverage of HIV testing among men who have sex with
men

with HIV who have tested and know their status.” For each indicator,
they set a target that they aim to achieve. The target is the specific goal
within that indicator (e.g., 90 percent of people living with HIV). Data
are the statistics and numbers used to report periodically on whether or
not an agency’s work is on track to reach the target. For a coverage
indicator, as touched on above, it is necessary to have a baseline
estimate of the number of people to be reached.
The work of setting indicators and targets and gathering data all
presume a clear consensus exists on what should be monitored, what
can be achieved, and how to measure progress. In many ways, though,
this consensus is still a work in progress, as we can see in the following
section, which explores a few examples of this in the Global Fund
Corporate Key Performance Indicators (KPIs).

THE GLOBAL FUND CORPORATE KEY PERFORMANCE

INDICATORS
Beginning in 2014, to monitor its performance, the Global Fund put in
place a set of corporate KPIs tied to the 2012–16 corporate strategy
(The Global Fund 2011). A second set of KPIs were approved for the
next 2017–22 strategy (The Global Fund 2016a, 2016b). However,

27
CONTESTED INDICATORS

setting targets and measuring progress required negotiation among

diverse actors on the Global Fund Board, as well as advocacy with
countries implementing funding. To understand why, it may be helpful
to briefly summarize the unique operating model of the Global Fund.
The Global Fund is a partnership made up of numerous agencies,
committed to the principle of “country ownership.” Thus the Fund
cannot dictate to countries what they should do with their funding.
A Country Coordinating Mechanisms (CCM), which ideally should
be made up of government, civil society, medical experts, and repre-
sentatives of people living with or affected by HIV, TB, and malaria,
manage the funding in the country. The CCM develops funding
requests, select implementing organizations, and monitor progress.
Technical partners, such as UN agencies, provide technical support
that aims to steer funding requests toward compliance with standards
and guidelines developed in Geneva. Funds are disbursed in tranches,
with each tranche released only when programs report meeting
targets.
The Global Fund Secretariat manages this work from its headquar-
ters in Geneva, and all its approximately 800 staff now work in the
Global Health Campus, near WHO: there are no country offices. The
funding requests from CCMs are reviewed by the Global Fund
Secretariat and by an independent panel of experts. Requests may be
sent back to the country, with recommended changes. Once the fund-
ing request is approved, the CCMs select principal recipients, often the
Ministry of Health, to manage the funding. The principal recipients
select sub-recipients and sub-sub-recipients to manage specific inter-
ventions. As the Fund does not have national offices, it engages Local
Fund Agents, usually local accounting firms, to monitor activities and
expenditures.
The indicators countries are encouraged to use in their funding are
set by the Board, which is so large that a colleague once compared it to
a parliament. Its twenty voting members each represent larger delega-
tions, divided equally among donors and implementers. In the donor
group, the makeup of each constituency is determined by size of con-
tribution to the Global Fund. The United States, United Kingdom,
France, Germany, and Japan, as the five largest donors, each represent
one seat and one vote. Smaller bilateral donors are grouped in shared
seats. Two other constituencies represent the private sector and private
foundations; the private foundations delegation is dominated by the
Gates Foundation, which makes the largest contribution of any private

28
 THE GLOBAL FUND CORPORATE KPIS

foundation. In 2018 the Board approved a new nonvoting seat for

public donors that have each pledged at least $10 million – currently,
South Korea and Qatar.
The ten implementers who make up the implementers’ group
includes seven representatives from developing countries (one from
each of five World Health Organization geographic regions, two
representatives from Africa). It also includes three representatives
of delegations of civil society and affected communities. The Fund
is one of the few international agencies to include civil society and
community representatives in governance, and the only one that
gives them three votes. There are eight ex-officio nonvoting mem-
bers, including UN agencies that provide technical advice on the
three diseases.
Thus, while indicators set by the Global Fund are important,
the process of agreeing on those indicators involves diplomatic
negotiation among all these diverse actors, importantly including
its bilateral donors, which each have their own foreign policy and
health agendas. When I interviewed Peter Sands, he was in the
midst of the Global Fund’s sixth replenishment campaign. Each
Global Fund donor, he said, was asking him for different kinds of
data in order to make the case for funding: “We have donors that
are interested in particular parts of the world; we have donors that
are interested in what we’re doing with a gender focus. There are
donors interested in the progress about key populations. . . .
There’ll be people who ask questions on what we’re doing about
specific types of intervention.”
The debates on the Board over what to measure and how to measure
it have often slowed the development of the Global Fund’s KPIs. For
the first strategy, from 2012 to 2016, because the Global Fund
Secretariat was preoccupied with a major internal restructuring, work
on the KPIs only began in early 2013, a year after the strategy had
begun. The Board did not approve the KPIs until the end of that year
(The Global Fund 2013). The targets and methodologies for each KPI
sparked further debate, because all were new, and they were approved
the next year (The Global Fund 2014). Thus the first report on perfor-
mance from the Secretariat to the Board could only come one year after
that, in November 2015.
At that point, the strategy period was almost over. While the
Secretariat reported on a few of the KPIs in 2017, they never delivered
an end-of-strategy overview of performance. Instead, the Secretariat

29
CONTESTED INDICATORS

appears to have quietly discarded the first set of KPIs, and smoothly
segued into a new, improved set of KPIs for the 2017–22 strategy (The
Global Fund 2017a). Development of this second set of KPIs went more
smoothly at first. However, as discussed below, debates over the targets
slowed approval again.
The next section explores three types of Global Fund KPIs in order to
illustrate the shifting nature of the goalposts, as well as the different
kinds of roles indicators can play: as signs in external communication,
as levers to direct funding to a certain area, or in some cases, both at the
same time.
1. Lives saved – As Sands said, “lives saved” is the main return on
investment, making it an important indicator for the Global Fund. In
2019 a month before the sixth replenishment (or donor pledging)
conference was due to take place in France, the landing page of the
Global Fund website announced that its partnership had saved thirty-
two million lives (The Global Fund 2019).
Similarly, at the fifth replenishment conference in Canada in 2016,
Prime Minister Justin Trudeau spoke in front of a screen projecting the
words “8 million lives will be saved/8 million des vies seront sauvées,”
and held a public conversation with Loyce Maturu, a young
Zimbabweam TB survivor who is living with HIV and who relies on
programs financed by the Global Fund for her treatment (Canada 2016).
“Lives saved” is primarily a sign, an external communications tool for
donors like the Global Fund. (Similarly, in 2018, PEPFAR also
reported that it had saved more than seventeen million lives
[PEPFAR 2018].) It is a compelling phrase, especially when explicitly
linked with the physical bodies of Global Fund beneficiaries, like
Maturu. Maturu contracted HIV at birth, not through sexual activity
or drug use; images of her used in campaigns by the Global Fund
Advocates Network show her engaged in virtuous activities such as
studying for a degree, educating peers about HIV, playing with neigh-
borhood children, and cooking dinner (GFAN 2016). Maturu is an
outspoken activist, but she is not shown protesting. And though the
Global Fund has also saved the lives of key populations through its
prevention work, Prime Minister Trudeau might have been more
ambivalent about sharing the stage with a male sex worker grateful to
the Fund for giving him free condoms. One important part of the work
this indicator does is emotive, encouraging public faith in the
investment.

30
 THE GLOBAL FUND CORPORATE KPIS

Reporting returns on investment in “lives saved” also usefully sug-

gests some quantifiable, fiscalized value. However, this is not the case,
“lives saved” is not in practice an indicator used to manage programs,
because it is too vague. In fact, the Global Fund’s method of calculating
“lives saved” has been the subject of academic debate. Friebel and
colleagues (2019) have argued that its fails to pinpoint the Global
Fund’s specific contribution. The Fund responded by emphasizing
that the metric had been arrived at through consultation with experts
and UN agencies (The Global Fund 2018b).
Both the Global Fund and PEPFAR continue to use “lives saved”
largely for external communications. Alongside the living example of
virtuous and nonthreatening spokespeople whose lives depend on
treatment, the number is a powerful synecdoche that abstracts the
Fund’s complex work and turns it into a powerful storytelling device
grounded in the “white savior industrial complex,” in which “Africa
serves as a backdrop for white fantasies of conquest and heroism” (Cole
2012). But “lives saved” also vaguely evokes neoliberal values of fiscal
probity. Donors and members of the public inspired by the idea of their
taxes helping rescue a virtuous African might also be reassured by the
vague aura of cost-effectiveness.
2. Service coverage – While the “lives saved” indicator is primarily
a sign for communications to the public, the Global Fund service
coverage KPIs are used to assess progress toward its core goals: whether
services funded are being used in sufficient numbers. However, these
have been a series of shifting goalposts, and reaching service coverage
targets has been sometimes difficult.
In the first set of KPIs for the 2012–16 strategy, the Global Fund set
a target of an overall number of those tested across all countries. The
Fund met this target within the strategy period, which was good news.
However, because the indicator only assessed the global number of
people tested, it could not assess what percentage of those estimated
to be living with HIV were being tested in any given country, and thus
whether or not high-prevalence countries were progressing toward
90-90-90.
After the Fast-Track approach was approved by the General
Assembly, the Fund revised its service coverage KPIs to align with
the Fast-Track targets: for example, the HIV testing indicator became
a coverage indicator, with a target of 90 percent.

31
CONTESTED INDICATORS

However, when this and other KPI targets were brought to the Board
for a vote, they were not approved. Implementing country and civil
society delegations on the Board raised concerns that the ambitious
coverage targets were unrealistic: they were derived from estimates and
in some cases estimates produced by mathematical models (Garmaise
2017 summarizes the letter implementers wrote about these concerns;
as a consultant, I contributed to drafting the letter, but not to
Garmaise’s article). Failure to reach the ambitious coverage targets
could mean that programs might later be assessed by the Global Fund
as failing.
To address these concerns, the Board set up a working group of
experts appointed by both donors and implementers to review the
evidence and modeling behind the proposed KPI targets (ibid.).
Based on their recommendations, the Board did eventually approve
a revised HIV testing coverage target focused more narrowly on just
a subset of thirty-three priority countries (Global Fund 2017b). As
Table 1.1 shows, progress in this group of countries has been slow but
steady. However, the downside of this approach was that it left dozens
of countries out of an important corporate KPI.
Another HIV service coverage indicator focused on treatment access
(the second 90 of 90-90-90). This indicator showed slow but steady
progress. For a third HIV service coverage indicator on treatment
adherence, progress was uneven. Reporting stalled then dropped
below the starting baseline, as UN agencies revised their methodology
for calculating results. In the 2017–22 KPIs, this indicator was focused
again more narrowly just on thirty-three priority countries and progress
became steadier.
Civil society groups and others on the Board urged the Global Fund
to set a KPI measuring service coverage for key populations. This
proved challenging to do, this time due to lack of data. For countries
to be able to report coverage of these interventions, they needed
a baseline estimate of the size of the populations to be reached: “key
population size estimates” of the number of sex workers, men who have
sex with men, transgender people, and people who inject drugs for each
country. UNAIDS and WHO recommend that countries conduct these
estimates for use in planning and evaluating services (UNAIDS/WHO
Working Group on Global HIV/AIDS and STI Surveillance 2010,
4–6). The political and methodological challenges this raises are
explored in later chapters.

32
 THE GLOBAL FUND CORPORATE KPIS

Suffice it to say that many countries lacked these size estimates at

that time – and still do today. Of 140 countries assessed by UNAIDS
and Global Fund researchers, 41 countries had not reported any key
population size estimates since 2010; many of these estimates were
assessed as inadequate (Sabin et al. 2016). For some populations, the
gaps are worse than others. For example, transgender women face
extremely high risk of HIV, but according to UNAIDS’ online data-
base, most countries have reported no size estimates for transgender
women (UNAIDS 2019c). There is “almost no data available on HIV
prevalence and risk among transgender people” in Africa, in particular
(Jobson et al. 2012, 160).
Getting this data was a critical first step. The first set of KPIs
from 2012 to 2016 focused on leveraging the Global Fund’s power
to get a targeted fifty-five countries to produce key population size
estimates. Progress was steady on this indicator, driven in part by
a motivated Global Fund manager, Jinkou “Button” Zhao, who
worked with UNAIDS to draw up a list of fifty-five countries and
visited often, pushing the size estimation studies along. By 2016,
all fifty-five countries had size estimates.
This meant that in the next set of KPIs, the Board could
progress to what they had wanted in the first place, setting
a coverage indicator and asking countries to report on percentage
of key populations to access services. However, of the fifty-five
countries that now had new size estimates, few had ever reported
data on service coverage. The key populations indicator was
revised again by the Global Fund to just measure how many
countries could even report coverage. But in the meantime,
a new problem had developed: some of the fifty-five countries
were now upper-middle-income, and were no longer eligible for
the Global Fund.
These service coverage indicator examples demonstrate just
a few of the challenges involved in setting and measuring the
Global Fund’s progress on core areas of its business. Unlike
“lives saved,” these indicators are levers that the Fund, UN agen-
cies, and others use to nudge countries to prioritize key areas of
the Fund’s strategy. However, as Table 1.1 shows, the shifting
goalposts and changing methodologies makes it difficult to assess
progress.
Asked if the indicators like these are useful in her role as
a Global Fund Board Member heading the US delegation,

33
TABLE 1.1 Selected Global Fund KPIs for HIV service coverage, 2014–16 and 2017–22

[1] Source: The Global Fund 2013, GF/B30/7, pages 8–9.

[2] Source: The Global Fund 2016b, GF/B35/07a – Revision1, pages 16 and 21.
[3] Indicator to be tracked on a specified set of countries selected in collaboration with technical partners.
[4] A “portfolio segment” of countries were selected from the 55 with key population size estimates by the end of 2016.
[5] The Global Fund 2014, GF/B32/24.a, pages 4–8.
[6] The Global Fund 2015, GF/B33/04B, pages 6–8.
[7] The Global Fund 2016c, GF/B35/22, pages 12–14.
[8] The Global Fund 2017a, GF/B38/24, page 13.
[9] “Some historical estimates are slightly different from the previously reported data due to technical partner revision of entire time series using most up-to-date
data” (ibid.).
[10] The Global Fund 2017b, GF/B36/ER08A, page 9.
[11] The thirty-three countries are Angola, Bangladesh, Botswana, Cambodia, Cameroon, Chad, Cote d’Ivoire, DR Congo, Ethiopia, Ghana, India, Indonesia,
Kenya, Lesotho, Malawi, Mozambique, Myanmar, Namibia, Nigeria, Pakistan, Philippines, Rwanda, South Africa, South Sudan, Sudan, Swaziland, Thailand,
Uganda, Ukraine, UR Tanzania, Viet Nam, Zambia, Zimbabwe.
[12] The twenty-six countries are Angola, Botswana, Cameroon, Chad, Côte d’Ivoire, DR Congo, Ethiopia, Ghana, India, Kenya, Lesotho, Malawi, Mozambique,
Namibia, Nigeria, South Africa, Swaziland, Tanzania, Uganda, Zambia, Zimbabwe, Guinea, Indonesia, Mali, Rwanda, South Sudan.
[14] The Global Fund 2018c, GF/B40/14, pages 40–45.
CONTESTED INDICATORS

Ambassador Birx, the head of PEPFAR, said that PEPFAR finds

“that averaging, percentages and non-disaggregated data lead to
your assumption that you are doing well everywhere, and we know
that is not true. There are sites that are really struggling; there are
sites that are doing extraordinarily well. We call this the tyranny
of averages: you lose the good and you can’t find the not-so-good.”
Sands responded that managing specific sites was not the purpose of
the KPIs. The Fund uses other indicators for this, he said: “The KPIs
aren’t designed to give country-level information. . . . They’re meant to
be high-level global indicators of progress: Broadly speaking, is [the
Fund] making progress against the key parts of the overall global
strategy?”
3. Health Systems Strengthening – If “lives saved” is a sign and “service
coverage” indicators are levers, then the Health Systems Strengthening
KPI does both kinds of work: telling stories that are compelling to key
stakeholders whose support is needed by the Global Fund and leveraging
funding to a priority area. However, of the KPIs discussed here, it has
been one of the most challenging to measure.
Many Board constituencies and donors have publicly urged the
Global Fund to focus more on strengthening health systems. As global
health agencies begin to address the problem of Universal Health
Coverage (UHC), some scholars have argued that global health finan-
cing should shift away decisively from specific diseases and toward
investing more broadly in strengthening health systems (Benton
2015; Kenworthy 2017). Sands has argued that the Fund’s investments
already do contribute to strengthening health systems (Davis and
Villafranca 2019). Including a KPI on health systems strengthening
was both a way to satisfy critics by showing that the Fund also saw
health systems strengthening as important, and a way to encourage
grant recipients to finance this work.
But while many institutions and experts clearly agree about the
importance of health systems strengthening, they do not agree how it
should be done or measured (Storeng 2019). Warren and colleagues,
including Global Fund staff (2013), found in their review that sig-
nificant Global Fund funds were being allocated to health systems
strengthening interventions, but also found a lack of consensus
about the mix was making it difficult to assess progress. Fan and
colleagues (2017) reviewed Fund investments in health systems
strengthening and found that even those emphasizing stronger

36
 PROGRESS, GOALPOSTS, OR A TYRANNY OF AVERAGES?

workforces in their budgets were not correlated with higher density

of health workforces.
The difficulties in agreeing what to measure are reflected in the
relevant KPIs. For the first set of KPIs in 2012–16, the Board approved
a Health Systems Strengthening KPI that was based on a Service
Availability and Readiness Assessment (SARA) index, with the assess-
ment conducted by WHO. The SARA index uses visits, interviews,
and other data to measure a range of areas, including trained staff,
medicines, commodities, and more. The target for the first Health
Systems Strengthening KPI was an improvement of 5 percent or more
in the SARA score of 60 percent of countries surveyed (The Global
Fund 2014, 9).
However, the reports were not forthcoming from WHO. By
April 2016, with the end of the strategy period in sight, there was just
one SARA assessment, for Uganda. Uganda showed only a minor
improvement to its SARA score; other countries, whose reports were
not finalized, had sub-par scores (The Global Fund 2016c, 19).
For the next strategy period, the relevant team at the Secretariat
took the reins in their own hands. They developed a KPI now
renamed “Resilient and Sustainable Systems for Health,” grounded
in a new approach driven in-house. This work included creating
a dashboard, defining a package of interventions, conducting baseline
studies, and using data reported directly to the Global Fund (The
Global Fund 2016b, 22; Boulanger 2019). By 2019, while there had
been measurable progress, one key indicator, on procurement systems,
still lacked a defined methodology (The Global Fund Office of the
Inspector General 2019, 13).

STEADY PROGRESS, SHIFTING GOALPOSTS,

OR A TYRANNY OF AVERAGES?
It might not be a surprise that donor priorities for funding in a context
of limited resources are contested and debated, as described in the
beginning of this chapter in reference to which countries should be
prioritized. It may be more surprising, though, that some areas at the
heart of the Fund’s investments are also difficult to measure at a global
level. This is due to competing priorities and frameworks, evolving
methodologies, gaps in data, and the complex work the indicators do
as both communicative signs for specific audiences, and as levers of
power and funds.

37
CONTESTED INDICATORS

Two independent audits of the KPIs by the Global Fund’s Office of

the Inspector General (an independent function that reports to the
Board) show some progress between the first set of indicators for the
2012–16 strategy, and the second set used for 2017–22. They con-
cluded that even though there were numerous weaknesses, many
had been or were being addressed, and suggested some improve-
ments to their design and use (Global Fund OIG 2016 and 2019).
But for some Board Members, the KPIs still require revision, accord-
ing to Rico Gustav:
If you look at the KPIs, some of the flow doesn’t make sense, to be
honest. That’s because [they are] a result of a compromise [among]
different donors, to actually put some of those KPIs in so that they can
report back to their countries. There must be a better way to accom-
modate different needs, and create something that actually makes
sense.
Sands saw the KPIs as a work in progress:
You can always argue about whether we’ve got precisely the right set
[of KPIs]. As we go into the next strategy exercise, we’ll look at them
again and say, do we need different KPIs to reflect the nature of the
strategic challenges? It’s always a little bit of a trade-off between the
things you care about, and the things you can actually measure.
KPIs, in other words, will continue to evolve and change.

WHY INDICATORS?
If indicators are so fluid, then why use them at all? Because indicators
used in global HIV finance offer openings for engagement to promote
accountability.
Critics argue that part of the problematic work done by indicators
has to do with a false sense of transparency: the information behind
them may be comprehensible to a small group of experts, while
remaining incomprehensible to the public (Bradley 2015). Davis,
Kingsbury, and Merry note that “the production of indicators is itself
a political process, shaped by the power to categorize, count, analyze,
and promote a system of knowledge that has effects beyond the
producers” (2015, 2). This political process systematically excludes
forms of knowledge that are not quantitative, a problem returned to as
well in later chapters.

38
 WHY INDICATORS?

Because of these and related concerns, some have begun to argue for
various forms of resistance to indicators and quantitative data used in
governance (Dalton and Thatcher 2014, 8). Drawing on the “slow food”
movement, Adams, Burke, and Whitmarsh (2014) called for an alter-
native to quantitative methods in health governance: they urged “slow
research,” or rich, locally grounded ethnography that could inform more
nuanced approaches to health.
The unstated implication of these arguments is that there is a unitary
and objective reality that numbers oversimplify, but that other kinds of
signs, such as qualitative research written with words, might capture
better. Some of this book draws on ethnographic research, and I agree
that the methodology should be used more often in global health
governance, because it introduces nuance and analysis and grounded
specificities that quantitative methods can miss. However, it is impor-
tant to note with humility that ethnography is also a form of significa-
tion that has grown out of colonial histories of unequal power that
shape subject-object relations (Lewis 1973).
All communicative signs are abstractions, whether numerical or
verbal. One methodology alone cannot capture the prismatic and
complex contexts in which HIV flourishes, or work as a sophisticated
decision-making or accountability tool. All forms of knowledge are
partial and emergent.
This may be reason for cautious optimism: signs like indicators
are partial and emergent, but they can be engaged, critiqued, and
changed. As Butler notes, a risk of constructivism is that it can be
reduced to determinism, erasing agency (1993, xviii). But increas-
ing the agency and engagement of marginalized voices has been
one of the greatest achievements of the global HIV response.
Country ownership is too often taken to mean government own-
ership; but because of commitments to transparency and commu-
nity participation in governance, the HIV sector has sometimes
opened up space for other, critical voices. Anthropologists and
human rights scholars can support their critical engagement, by
introducing questions grounded in alternative forms of epistemol-
ogy beyond positivist measurement. To do so may require having
difficult conversations as we reach across the divides of our dis-
ciplines and question what we think we know.
While some critics argue for slow research, Sands feels that data
production needs to speed up. At Standard Chartered bank, he
recalled receiving reports daily: “flash data,” which was understood

39
CONTESTED INDICATORS

to be only 80–90 percent accurate, but which could give him

a view on one day of the global performance of key businesses
the day before. In global health, he said, he must rely on annual
UN reports that may lag months behind the rapid pace of new
infections, slowing his ability to respond to emergencies. “It’s very
difficult to move much faster than the cycle time of the informa-
tion you get,” he said. “You’re kind of flying blind.”
Just moving to quarterly updates, he said, would make an enormous
difference; it would “start making people think a bit differently about
program design and . . . the cycle time in which you reprioritize and plan
things. I think we need that sense of urgency.”

ABOUT THIS BOOK

This book is written for two audiences: scholars and practitioners. As
an engaged anthropologist myself, I hope it will enable cross-
disciplinary conversations, and so it is written in an attempt to walk
a thin line between academically credible research and pragmatic
concerns of interest to civil society activists and global health
officials.
Some of the book is informed by my professional experience: first as
a folklorist, then a researcher at Human Rights Watch; then founder of
Asia Catalyst, an NGO working with community-led health rights
groups in China and Southeast Asia; then as senior advisor on human
rights at the Global Fund; and lastly as an independent consultant
based in Geneva, Switzerland, working on strategy and policy in global
health governance.
It is written as a series of encounters with quantitative tools and
policies used to make decisions in global HIV finance: population
size estimates, biometrics, cost-effectiveness software, investment
cases, infectious disease models, randomized controlled trials, indi-
cators, and compliance mechanisms; examining each through the
critical lens of anthropology and human rights. Woven throughout
these dives into the technocratic tools of global health governance
are a series of vignettes from an ethnographic study in the
Caribbean. This aims to introduce real people whose lives are
affected by data-driven global health decisions and show how
they worked together to gather data on key populations that
empowered them to make their own decisions. The methodologies
used are briefly summarized below.

40
 METHODOLOGIES

METHODOLOGIES
During 2016–19, I worked with an NGO, Caribbean Vulnerable
Communities, to conduct five ethnographic field research trips to
the Eastern Caribbean of periods ranging from one to six weeks.
My research was a study of a key population size estimation study
in six countries, particularly in Grenada, and it aimed to docu-
ment the challenges faced by the researchers, their engagement
with civil society, the choices they made, and the social factors
shaping scientific results (Latour and Woolgar 1986). During these
visits, I participated in meetings as an observer and conducted
semistructured interviews over three years with the same core
group of a dozen participants. They included academic research-
ers, civil society managers and staff, indigenous field workers,
government health officials, and consultants from Grenada,
Saint Lucia, Dominica, and the Dominican Republic. I also
spoke by phone with ten experts at US and international organi-
zations with expertise in HIV in the region. Meanwhile, in
Geneva, I also conducted semi-structured interviews with thirty-
four technical experts, managers, and staff of international orga-
nizations and civil society organizations in the context of their
professional work.
With each person interviewed, I discussed the purpose of the book
and potential risks, which included the possibility of their disclosing
negative perceptions that could cause reputational harm to the inter-
view or others, leading to their experiencing difficulties in working with
larger agencies or with their own governments. I obtained verbal
informed consent. Each person quoted in the book was invited to
review their quotes, to withdraw them, or to propose revisions. Most
did not make changes to what they had said, or made only small
grammatical changes that did not affect the substance. In a few cases,
individuals requested anonymity or to use their first names or initials,
either because they were not authorized to speak for their institutions or
because they were concerned about being identified as members of
stigmatized key populations groups. A handful of people asked to
speak on background.
In the course of my work as a global health consultant, my
thinking about data in global health governance was shaped by
my participation in civil society meetings, Global Fund Board
meetings, and as an observer at two UNAIDS Programme

41
CONTESTED INDICATORS

Coordinating Board meetings. I did not write explicitly about

these meetings, as my participation in most of these were pro-
tected by confidentiality agreements with my clients. In Chapters
2 and 6, which drew extensively on materials originally produced
for clients or colleagues, I obtained permission based on their
review of the chapters. This included my work for the three
civil society delegations on the Global Fund Board on the
Eligibility Policy, discussed in a later chapter, and on a report I co-
authored with the Kenya Legal and Ethical Issues Network on
HIV and AIDS (KELIN) and the Kenya Key Populations
Consortium, discussed in the next chapter.
I also read widely in academic and grey literature, as well as global
health policies, published board meeting reports, and data published by
UNAIDS, WHO, UN Office of Drug Control (UNODC), UN
Development Programme (UNDP), PEPFAR, and the Global Fund
on their websites.
This research was approved by the Institutional Review Board at
St. George’s University, Grenada. It was largely funded from my perso-
nal savings earned while teaching and working as a consultant. CVC
contributed per diems and provided shared housing on three of my field
trips. A prize from the Swiss Network for International Studies in 2017
covered the cost of another trip. Beyond this I received no other
financial support.
As I came across findings that I thought they could use, I briefed civil
society activists and UN technical advisors. Sometimes this meant the
conditions I was writing about changed. Where I am aware of these
changes, they are noted.
There are limitations to these approaches. One important lim-
itation is the focus on HIV, without addressing similar issues in
tuberculosis or malaria, or doing justice to the complex problems
raised by the needs of some groups not discussed in the book, such
as prisoners, indigenous peoples, or persons with disabilities, for
example.
In addition, while the status of a professional offers some insights, it
also sometimes makes it difficult to criticize colleagues and former
clients. My discussion of the role of civil society engagement in global
health governance reflects this, as it does not delve into the real
weaknesses and abuses in some organizations, a topic addressed in
some other studies. I have tried to be fair but will fall short of praising

42
 METHODOLOGIES

global health institutions as much as their champions would like, or

being as tough as their critics would be.
*
The chapters that follow telescope in and out between the “coun-
try” and “global levels,” which is often the working practice of
global health. As Tsing (2004) points out, there is no such thing
as a view from nowhere. In Geneva, headquarters to several global
health agencies, officials often speak of the “global level” as an
imaginary shared space where they work, and the “country level”
as a common set of developing countries. They draft policies at
“global level” and pilot them at “country level,” taking away
“lessons learned” to revise or discard the policies. The first warn-
ing sign for a policy that will have a short life in global health is
when officials began to warn one another in Geneva that “it will
be confusing to countries,” as if they were not in a country, or
were not confused. While not strictly a field site, Geneva emerged
as a venue for unexpected overlaps and arms-length reflection.
Independent scholars writing on the fringes of the academy some-
times develop a resemblance to Ahab. I chased data and its critics
across oceans and airports, through libraries, cafeterias, WhatsApp
groups, and UN corridors. Indicators and data turned into slippery
prey, chased across oceans: sometimes looking like a mathematical
leviathan, other times a flickering school of tropical fish that slipped
away when grasped.
This translucent and evanescent quality of data under scrutiny, the
slipperiness of indicators, contrasted with the rhetorical solidity they
assumed on a slide deck used by someone to make a fact-based case.
Data that looks like a Great Wall from afar can sometimes crumble like
sand when scrutinized up close. Looking at it as an anthropologist and
human rights practitioner, it often appeared that key parts of the
context had been left out to construct a solid fact.
But some indicators and data truly are better than others, and as
they were all created by humans, they all can be deconstructed and
remade in other forms. Ferguson (1995) showed that development aid
can be an “anti-politics machine” that attempts to turn political
problems into technical ones, while quietly expanding state bureau-
cracy. The tools discussed in this book are perhaps some of the small
engines driving antipolitics machines, which can be disassembled and
examined.

43
CONTESTED INDICATORS

As one example of this, the next chapter explores one of the most
basic pieces of data needed to ensure “no one is left behind” in the race
to HIV control: the key population size estimate. In the Venezuela
case, as discussed in the beginning of the chapter, this was a crucial
missing data point for eligibility, because due to homophobia and
stigmatization of men who have sex with men, the data had not
been gathered. This widespread problem is explored in the next
chapter.

44
REFLECTION QUESTIONS

These are suggested reflection questions for participants in health

governance meetings about indicators, models, and data used to make
decisions.

INDICATORS AND TARGETS

• Were these indicators selected through a process that was demo-
cratic, transparent, and included elected representatives of my gov-
ernment and of my community?
• What is the indicator aiming to measure and why?
• Are these indicators signs that aim to communicate something to
a public audience?
• Are these indicators levers that apply pressure to create a change in
behavior or policies? If so, is that change being adequately supported and
funded?
• Is the indicator going to produce the kind of data we need to make
informed decisions?
• Does the indicator require data that is disaggregated by age and
gender? If not, why not?
• Do the indicators relate to an index which rank-orders things as
better or worse that cannot reasonably be rank-ordered, because they
are different from one another?
• If the indicator is a coverage (or percentage) indicator, does the
baseline estimate of the population exist, and is that baseline plausible?
• What do these indicators leave out, and why?
• Does the data to report against this indicator exist? If not, where will
it come from?

246
 DATA

• What are the consequences if the targets are not met?

• Are the targets realistic for our context? Are they too ambitious, the
right level of ambition, or not ambitious enough?
• Do the targets require laws or practices to change in order to be
achievable? If so, is this work being funded and supported?

MODELS
• What are the assumptions behind the models?
• Are the models being used to predict a future scenario? If so, what is
the story they tell? Is it a story that serves some specific political or
economic interest?
• Are there difficult realities that the model is failing to address? If so,
how could they be factored in the model?
• Is anyone excluded from the model who should be reflected in it?

DATA
• How was this data gathered?
• Who gathered the data? Was there community involvement in the
research design, implementation and data analysis? If not, why not?
• Who funded the data-gathering, and why?
• Was the data gathered using protocols that clearly respect the rights,
and identify and manage any risks, for vulnerable communities?
• Who owns the data?
• Is the absence of evidence of some difficult and hard-to-acknowledge
reality or population being used as evidence that those facts or people
do not exist?
• Is it possible to use other forms of evidence, such as reports from civil
society?
• Is it possible to use a reverse burden of proof, as ICRC does for
conflict-related sexual violence (i.e., assume that the problem or
group exists and program accordingly, unless someone can produce
evidence to the contrary)?

247
REFERENCES

Adams, Vincanne, ed. 2016. Metrics: What Counts in Global Health. Durham:
Duke University Press.
Adams, Vincanne, Nancy J. Burke, and Ian Whitmarsh. 2014. “Slow
Research: Thoughts for a Movement in Global Health.” Medical
Anthropology 33, no. 3: 179–97. DOI:https://doi.org/10.1080/
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COURT CASES
Ng’etich, Kirui, and KELIN v. Attorney General, Principal Magistrate’s Court,
Public Health Officer Nandi and Minister Health [2014] HCK 329.
SWK, PAK, GWK, AMM, KELIN and GEM v. Médecins sans Frontières
France, Pumwani Maternity Hospital, Marie Stopes International and
Ministry of Health [2014] HKC 605.

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