PHOTO: ERIC BOND/EGPAF, 2017

Advocacy Tool Kit

Children and Adolescents Living with and at Risk for HIV
Contents

Introduction 01
Elimination of Mother-to-Child Transmission of HIV 03
Pediatric HIV Treatment 09
Adolescents and HIV 15
Action Needed by First Ladies 21
Tools for Engagement & Opportunities for Regional 23
and National Collaboration
Introduction
Purpose
We are at a critical point in the AIDS epidemic, where concerted efforts and investment
now could result in the end of AIDS as a public-health threat by 2030.

To achieve the ambitious goal for HIV/AIDS as set lives of children and adolescents living with and affected
out by the United Nations member states in the 2015 by HIV; they can also usher in a shift in the response to
Sustainable Development Goals and the targets outlined the epidemic to help lead to the end of AIDS.
in the 2016 United Nations Political Declaration on HIV This tool kit provides statistics, messages, and key
and AIDS, those furthest behind must be reached first— actions that first ladies can undertake to advocate for
this includes children and adolescents living with and continued uptake of prevention of mother-to-child
affected by HIV/AIDS. Addressing HIV in children and transmission (PMTCT) of HIV services, increased
adolescents can reverse and even halt the epidemic to early infant diagnosis (EID) of HIV, and improved
create an AIDS-free generation. pediatric HIV treatment coverage. It will also help first
Engagement at every level—including by presidents, ladies address the unique issues faced by adolescents
first ladies, and parliamentarians—is needed to reach both growing up with and at risk for HIV. This tool kit
the children and adolescents most in need. Engagement complements the recently launched African Union–
by first ladies of countries where the HIV epidemic Organisation of African First Ladies Against HIV/
has hit hardest is especially essential to drive urgent AIDS Elimination of Mother-to-Child Transmission
action. First ladies are uniquely positioned to use their of HIV (AU-OAFLA EMTCT) campaign by providing
political and social influence to effect change in their supplemental background information on technical
countries and bring about better access to and uptake of areas and advocacy strategies that can then be tailored
prevention, care, and treatment services for children and for individual use. Finally, the tool kit facilitates the
adolescents living with and affected by HIV. Through achievement of the goals in OAFLA’s strategic plan of
policy reform, resource mobilization, and awareness 2014–2018 and beyond.
raising, first ladies can have a profound impact on the

About the Organisation of African First Ladies Against HIV/AIDS

OAFLA was founded by 37 African First Ladies in 2002 as a collective voice for Africa’s
most vulnerable people: women and children infected and affected by HIV and AIDS.

OAFLA is guided by the vision of an Africa free from managing, and eliminating HIV and AIDS.
both HIV/AIDS and maternal and child mortality—an Given this obligation, the OAFLA secretariat has a
Africa in which women and children are empowered mandate to increase the advocacy capacity of first
to enjoy equal opportunities. OAFLA works to enable ladies and to develop critical partnerships to mobilize
African first ladies to advocate for effective policies and resources; raise awareness; develop and support HIV/
strategies aimed at ending the AIDS epidemic as a public- AIDS prevention; and promote treatment, care, and
health threat, reducing maternal and child mortality, support programs. In this spirit, the Elizabeth Glaser
and empowering women and children through strategic Pediatric AIDS Foundation (EGPAF) and OAFLA
partnerships in the spirit of solidarity. OAFLA’s mission collaborated to develop this tool kit to increase the ability
is to cultivate the exchange of experiences among African of first ladies to promote effective solutions to reach the
first ladies and increase the capacity of first ladies and elimination of mother-to-child transmission of HIV,
other women leaders to advocate for effective solutions address the pediatric HIV treatment gap seen in African
to the AIDS epidemic, as well as to fight against HIV/ nations, and drive action to ensure that adolescents
AIDS-related stigma and discrimination. At the national receive the services required to prevent and treat HIV.
level, the first ladies contribute to efforts in preventing,
1
About the Elizabeth Glaser Pediatric AIDS Foundation
Elizabeth Glaser, one of the co-founders of EGPAF, contracted HIV through a blood
transfusion in 1981 while giving birth to her daughter, Ariel. She and her husband later
learned that Elizabeth had unknowingly passed the virus on to Ariel through breast milk
and that their son, Jake, had contracted the virus in utero.

In the course of trying to find treatment for Ariel, the Figure 1. Countries in Africa Where
Glasers discovered that drug companies and health
agencies had no idea that HIV was prevalent among
EGPAF Works
children. The only drugs on the market were for adults;
nothing had been tested or approved for children.
Ariel lost her battle with AIDS in 1988. Fearing that
Jake’s life was also in danger, Elizabeth rose to action.
EGPAF originated from three mothers around a
kitchen table in 1988. With her close friends, Elizabeth
created a foundation that would raise money for
Uganda
pediatric HIV/AIDS research.
Elizabeth lost her own battle with AIDS in 1994. Today, Côte d’Ivoire Kenya
Rwanda
EGPAF is a leading global nonprofit organization Cameroon
Democratic Tanzania
dedicated to preventing pediatric HIV infection Malawi
Republic of
and eliminating pediatric AIDS through research, Congo Zambia
advocacy, and prevention and treatment programs. Zimbabwe
Angola
Elizabeth’s legacy lives on through EGPAF and in her Mozambique
Namibia
son, Jake, who is now a healthy young adult. Swaziland
Lesotho

2
Elimination of Mother-to-Child
Transmission of HIV
More than 90% of all pediatric HIV infections are through mother-to-child
transmission. Yet, 100% of these infections are preventable through successful
PMTCT services.

EMTCT is defined as achieving a national mother-to- are structured along the four prongs of PMTCT that
child transmission rate of less than 5% at 18 months were reinforced in the 2016 United Nations Political
among breastfeeding populations and 2% or less among Declaration on HIV/AIDS. To be validated by the World
non-breastfeeding populations.1 Meeting this target Health Organization (WHO) as achieving elimination of
will require near universal testing, treatment, and viral the vertical transmission of HIV (and syphilis), countries
suppression of pregnant and breastfeeding women. must meet several process and impact targets.2
Additional targets and indicators relevant to elimination

Prevention of Mother-to-Child Transmission of HIV

Mother-to-child transmission of HIV occurs when an HIV-positive woman passes the
virus to her child during pregnancy, childbirth, or breastfeeding.

PMTCT includes a series of interventions to help Prevention of HIV Infection Among Women
prevent new HIV infections in children: prevention of Childbearing Age and Their Partners
among adolescent girls and young women, testing and
treatment of pregnant and breastfeeding women, and Primary prevention is a vital first step in the PMTCT
identifying HIV-positive children and linking them process, as it provides women and their families with
to treatment. PMTCT consists of four prongs that all the services needed to stay HIV negative. HIV education,
together provide a comprehensive set of services to testing and prevention counseling, and pre-exposure
women and families: prophylaxis (PrEP), where available, are important to
ensure that HIV-negative women remain HIV-free. In
1. Prevention of HIV infection among women of
addition, comprehensive prevention services, such as
childbearing age and their partners.
voluntary medical male circumcision, HIV testing and
2. Reproductive health support and prevention of sexual health education, must be made available to male
unintended pregnancies among HIV-positive women. partners.
3. Access to antiretroviral therapy (ART) to prevent Unfortunately, accurate knowledge of how to prevent
new infections in infants from HIV-positive mothers. HIV acquisition remains low. For example, in a
4. Treatment, care and support services for HIV- 37-country study between 2011 and 2016, it was reported
positive mothers, infants, and families.3 that only 30% of young women aged 15–24 years had an
accurate understanding of how to prevent HIV.4

3
Prevention of HIV Infection Among Women Treatment adherence during pregnancy, childbirth, and
of Childbearing Age and Their Partners all of breastfeeding is crucial to prevent transmission
(Continued) from the mother to the baby. Continued monitoring
of ART in new mothers is needed throughout the
More needs to be done to ensure that young women breastfeeding period to ensure that an HIV-negative
and their male partners have the tools and services they infant remains HIV-free, as it is estimated that nearly
need to protect themselves from acquiring HIV and to half of all new infections in children occur during the
know their HIV status. This PMTCT prong also includes breastfeeding period.5 Counseling should be provided
continued testing for HIV-negative pregnant women to emphasize the importance of delivery at a health
throughout their pregnancy and breastfeeding to facility, where safe medical interventions are available,
ensure that they remain HIV negative; this is especially if necessary, and prophylaxis can be given to newborns.
significant for women in relationships with HIV-positive It also helps improve treatment adherence through the
partners (sero-discordant couples) or partners whose end of the breastfeeding period: Transmission rates of
HIV status is unknown. If a woman acquires HIV during HIV from mother to child can be as high as 45% without
pregnancy or breastfeeding, the risk of infecting her any interventions. With appropriate interventions,
unborn or newborn baby will be even higher; therefore, however, this rate can be reduced to less than 5% for the
she should be immediately initiated on ART to prevent breastfeeding population.6
transmission of HIV to her child.
HIV Care and Treatment Services for
Family Planning HIV-Positive Mothers, Infants, and Families
It is important that women have access to the WHO guidelines call for all HIV-positive pregnant
reproductive health services and information they women to remain on ART for life—not only to prevent
need so they can plan how and when to have children. HIV transmission to their infants but also to protect
In addition to HIV testing and counseling, this PMTCT their own health.7 In addition, WHO recommends a
prong includes education on how to prevent unintended treatment-for-all approach, in which all HIV-positive
pregnancies and the use of family planning commodities, individuals are enrolled into care and initiated on
such as condoms, oral contraceptives, and intrauterine treatment regardless of their age, gender, viral load or
devices. Providing these services allows women the CD4 count.7 This means that HIV-positive women and
health benefits gained by spacing their pregnancies. their HIV-positive infants should be started on treatment
Through family planning services, women and their and should have access to HIV care, treatment, and
partners are provided with information on their options prevention services. This continuum of care allows
for expanding their families while taking measures to families living with HIV to remain healthy and prevents
protect both their partner and their baby, whether or not those who are HIV negative from acquiring HIV.
they are HIV positive.
Through this four-pronged approach to PMTCT,
Access to ART to Prevent HIV Transmission significant progress has been made. As a result of
from Mother to Child delivering ART to pregnant and breastfeeding women
and their infants, more than two million new infections
HIV-positive mothers should be provided with the in children have been averted.8
treatment, counseling, and maternal health services
needed to prevent the transmission of HIV to their baby.

4
Challenges to Achieving PMTCT
Although great strides have been made, challenges still remain in reaching all women
who are in need of PMTCT services.

Knowing HIV Status Treatment Adherence

Despite the established effectiveness of PMTCT, many PMTCT is extremely effective if pregnant women are
pregnant women do not know their HIV status, and initiated on treatment immediately after they are
currently only three quarters (76%) of pregnant women diagnosed with HIV, adhere to treatment, and remain in
living with HIV globally have access to ART.4 As a result, care. Treatment adherence through pregnancy and the
there were still 160,000 new infections in children breastfeeding period is most imperative for PMTCT to
younger than 15 years of age in 2016—the majority of be successful. However, many factors can cause women
which occurred in Africa.9 to not adhere to their treatment regimen, increasing
Often, stigma, discrimination, cultural norms, and the possibility of HIV transmission to their child. For
family dynamics impact a woman’s decision to seek and instance, once an HIV-positive pregnant woman comes
accept HIV testing. In addition, many HIV-negative in for testing and receives her positive test results, she
women who are in relationships with HIV-positive may face challenges in disclosing her HIV status to her
partners, or partners whose HIV status is unknown, are partner and family. Many face stigma and discrimination
usually not repeatedly tested for HIV throughout their from community members, who “speak poorly about
pregnancy or during breastfeeding. This often results in antiretroviral therapy and look down on those using it.”10
newly infected HIV-positive pregnant or breastfeeding Receiving support from partners, family and friends is
women not being identified and enrolled on ART.4 associated with higher treatment adherence.
Because these so-called “incident infections” create a In addition to the mental and emotional challenges
much higher risk of transmitting the virus to the fetus or faced by a person living with HIV, antiretroviral drugs
an infant, early awareness and prompt initiation on ART (ARVs) may occasionally cause physical adverse side
are critical in preventing the transmission of the virus effects, making people on ART question the need for
from the mother. taking medication. Separate locations and access to HIV
Finally, globally there are still many women who do not and antenatal care services can also create challenges for
receive antenatal care at a healthcare facility and instead pregnant women to remain in care, as they have to go to
deliver at home, which means they do not receive different points in the health facility to get the services
proper antenatal care, HIV testing and PMTCT services, they require; this can be time consuming and costly.
including preventive treatment for the newborn. Finally, an unclear understanding of how PMTCT and
Without accurate knowledge of their status, pregnant ART work may result in a lack of confidence in either the
women cannot receive appropriate treatment to protect intervention or the health care provider, or can cause
their child from acquiring HIV or take care of their own a misunderstanding of the importance of adherence
health. during pregnancy and breastfeeding.

5
Treatment Adherence (Continued) Failure to Reach Full PMTCT Coverage
These challenges must be addressed in order to reach all Efforts to prevent MTCT begin before conception and
those in need of PMTCT services. Achieving the end of extend through the end of the breastfeeding period, at
AIDS, as outlined in the AU–OAFLA EMTCT campaign, which time children receive their final HIV test results.
and reaching the other WHO criteria for validation of Many of the HIV-exposed children will be HIV-negative;
the elimination of HIV will require full PMTCT coverage children who test HIV-positive, however, should
for all women, their partners, children and families. The be referred immediately to HIV care and treatment
WHO MTCT elimination criteria include a country having services. Children living with HIV need to be initiated
both (1) fewer than 50 new pediatric HIV infections per on ART without any delay and must remain in care and
100,000 persons and (2) an HIV transmission rate of treatment programs for the rest of their lives.
less than 5% for breastfeeding populations and less than Ending AIDS in children is possible, but it will require
2% for non-breastfeeding populations.11 not only advocating for expanded services to eliminate
pediatric HIV infection in the first place but also
improving pediatric care and treatment services in each
country.

6
 Start Free
As a result of the dedicated efforts taken under the Global Plan Towards
the Elimination of New Infections Among Children by 2015 and
Keeping Their Mothers Alive, new infections in children were reduced
by 60% since 2009 in the 21 priority countriesi in Africa.3

Yet, 160,000 children were still newly infected with HIV An AIDS-free generation will not be reached without
in 2016—most of them in Africa. The Start Free goals first achieving elimination of MTCT, ensuring that all
of the Start Free, Stay Free, AIDS Free frameworkii, pregnant women living with HIV have access to quality
launched in 2016, continue these efforts with a focus on PMTCT services. WHO now recommends a test-and-
the same priority countries, plus India and Indonesia. treat approach to HIV services, according to which all
This framework emphasizes sustained PMTCT programs people living with HIV should be offered lifelong HIV
in countries where the elimination of MTCT has already treatment. Retaining mothers on ART and in care
been reached or is close to being attained. through pregnancy and breastfeeding can help improve
tracking of HIV-exposed infants and increase the
Start Free Goals
likelihood of testing those infants for HIV. In addition,
• Reach and sustain 95% of pregnant women living with keeping the mother-baby pairs linked in health care
HIV with lifelong HIV treatment by 2018. services will help simplify the follow-up process and
make tracking those who are lost to follow-up easier.
• Reduce new HIV infections in children (0–14 years)
to less than 40,000 annually by 2018 and less than
20,000 annually by 2020.

i
The 21 priority countries include: Angola, Botswana, Burundi, Cameroon, Chad, Côte d’Ivoire, Democratic Republic of the Congo, Ethiopia, Ghana, Kenya, Lesotho, Malawi, Mozambique,
Namibia, Nigeria, South Africa, Uganda, United Republic of Tanzania, Swaziland, Zambia, and Zimbabwe.

The Start Free, Stay Free, AIDS Free framework is led by the Joint United Nations Programme on HIV/AIDS (UNAIDS), the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR),
ii

the United Nations Children’s Fund (UNICEF), the World Health Organization (WHO), and the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).

7
Key Messages Key Facts

• Every child deserves the chance to start life • 90% of HIV infections in children are from
HIV-free. mother-to-child transmission.

• Preventing mother-to-child transmission of HIV • With effective PMTCT interventions, the risk
is possible. of HIV transmission from mother to child is
reduced to less than 5%.
• All pregnant women need access to quality
antenatal care services that include PMTCT • In 2016, only 76% of the 1.4 million pregnant
services for HIV-positive pregnant women. women living with HIV had access to ART
to prevent mother-to-child transmission of
• Treatment adherence by the mother and HIV.
continued follow-up post-delivery and during
breastfeeding are required to ensure that a baby • In 2016, 160,000 children were newly
is and remains HIV negative and that mothers stay infected with HIV.
healthy.

• Nations should adopt policies and laws that create

an enabling environment and discourage stigma
and discrimination based on HIV status.

• Community-based services and peer-provided

support systems help women access and stay in
PMTCT services.

8
Pediatric HIV Treatment
Children living with HIV must be prioritized.Focused global efforts to enroll more
children living with HIV on lifesaving ART have led to significant gains—and yet more
than half of children living with HIV are not receiving treatment.

Early Infant Diagnosis and Linkage 1. Entry Points for Identifying HIV-Positive
to Care Children
To ensure that all children living with HIV are enrolled The traditional entry point for identifying HIV-positive
early into care and treatment services, children must infants is through services provided to HIV-positive
first be diagnosed. However, identifying children mothers—that is, through PMTCT services for HIV-
living with HIV can be challenging. In 2016, less than positive pregnant and breastfeeding women. However,
50% of HIV-exposed infants in high-burden countries focusing on new mothers is not sufficient. With less than
received a required virologic test to determine HIV 50% of children accessing early infant diagnostic (EID)
infection within two months of birth, as recommended tests globally in 2016, focus also needs to be placed on
by WHO.4 In 2016, only 43% of children living with HIV identifying and testing HIV-positive children older than
were enrolled in treatment.4 Without treatment, about 12 months of age. This is why it is important to continue
one-third of children living with HIV will die by their implementing and expanding provider-initiated
first birthdays, and about half will die by the age of two HIV testing and counselling (PITC) outside PMTCT,
years.12 With treatment, however, children living with such as at immunization clinics, maternal and child
HIV can grow and develop into healthy adulthood. health centers, nutrition centers, inpatient wards, and
Early initiation of ART in infants living with HIV before tuberculosis clinics, as well as implementing outreach
their twelfth week of life has been shown to reduce services within the community.12
mortality by 75% in low-resource settings.13 Early More active outreach needs to be done to test and
initiation of ART has shown increased growth benefits identify older children, who tend not to interact with
for children, including mitigating the negative impacts the health system as frequently as young children and
of HIV on nervous system development; it could infants. These HIV-positive children were not identified
also potentially reduce other long-term risks such as as infants or young children and may have slow-
cardiovascular disease and chronic lung disease.7 progressing HIV, which means they often do not access
Early diagnosis and initiation of treatment among HIV- health facilities or discover their HIV status until years
positive infants and children is therefore a critical step after initial infection, when they begin to suffer from
in addressing the HIV epidemic. To reach these children, HIV-related illnesses and growth delay. Although most
several service areas must be improved. children and adolescents living with HIV acquire the
virus through MTCT, services “have rarely focused on
improving strategies for identifying older children and
adolescents growing up with HIV and linking them to
treatment and care.”14

9
2. HIV Testing and Delivery of the Results home. In addition, HIV treatment is for life; thus, children
and their mothers must be linked to and enrolled in care
Diagnosing HIV in infants is complex due to the presence and treatment services and retained in those services to
in their blood of the antibodies transferred from their keep them healthy. This becomes particularly important
mother during their time in the womb. For this reason, when considering the aforementioned weak linkages and
it is important that all HIV-exposed infants receive a substantial delays between diagnosis and initiation of
specialized virologic HIV test to confirm HIV status.15 pediatric care and treatment services.17 In sub-Saharan
This test is different from the rapid HIV antibody test Africa, 3.8 years is the median age of children living with
used in adults, which provides results within hours. HIV to be initiated on treatment.14
Laboratories with the capacity to conduct virologic HIV
Once children are in care and treatment, it is imperative
testing are limited and are primarily located in central
that they are not lost to follow-up to ensure that their
and regional hubs; dried blood spot (DBS) samples must
health is monitored and treatment is adjusted as they
be taken from the infant and sent to a central laboratory
age or if treatment failure occurs. Retention in care
for testing, with the results then being sent back to
is hindered by many factors, including “busy clinics,
the decentralized location to be given to the child’s
long wait times, stigma, excessive turn-around times,
caregiver. Studies from sub-Saharan Africa reported
weak referral systems, lack of integration services,”
that long delays in completing the testing cycle, which
as well as the logistical and financial challenges of
includes the return of the results from the laboratory to
bringing children to the clinic on a regular basis.18 The
the clinic and caregiver, led to significant loss to follow-
low number of health care workers trained and skilled
up of HIV-exposed infants.16 While EID networks have
in identifying and managing pediatric HIV/AIDS and
been improved in many countries, with significant
pediatric ART also limits access to HIV testing and
reductions in turnaround time for test results, many
subsequent linkage to care and treatment. Many health
countries continue to experience a delay of 16–23 weeks
care workers stationed at facilities where infants seek
for infants between testing and ART initiation, which is
care have limited knowledge of EID; are reluctant to
well past the period of peak mortality for HIV-positive
recommend HIV testing for children and adolescents;
infants of 8–12 weeks of life.14 Implementing point-
lack the skills and confidence to identify and manage
of-care testing (POCT) technologies at decentralized
infants, children, and adolescents living with HIV; and
locations, providing short message service (SMS)
are inexperienced in counseling children and families
printers to receive electronic test results, and supporting
and prescribing ART for children.19 Children may
blood sample and test result courier services will result
therefore benefit from the innovative patient-centered
in more children receiving their HIV diagnoses in
service delivery models being developed for adults that
enough time to be quickly linked to care.
reduce the frequency of clinical visits, allow for multi-
3. Linkage to Care and Retention month drug refills, provide community-based services,
and otherwise facilitate access to care. Youth-friendly
Once a child is diagnosed with HIV, the challenge services, assistance with disclosure to children, and
becomes linking him or her to care and treatment peer-led adherence support are also known to help with
services and keeping that child in those services. Some retention in care among adolescents and young adults.
mothers may find it difficult to accept an HIV-positive
diagnosis for their infants or to disclose the news to
family members or others whose support could facilitate
effective treatment of the child. If the mother does not
already know her status, she needs to be tested for HIV
and provided with support in disclosing her status at
10
Pediatric Formulations and Drug Resistance recommended first-line ART regimens.”23 New and
improved first-, second-, and third-line drugs are
An important barrier that contributes to children not required to better address the needs of children living
being initiated in or retained on treatment is the limited with HIV. Several promising pediatric formulations are
availability of pediatric-friendly formulations of ARV in the development pipeline; as they become available, it
drugs to treat HIV. Clinical studies on ARVs for use in is important that countries work quickly to ensure they
the pediatric population often occur years after drugs are registered, procured in country, and made available
are approved for adults, which limits the availability of to all children living with HIV.24
safe and effective ARVs for children. The development
of pediatric formulations and diagnostic tools is often Stigma and Discrimination
considered an ineffective use of resources because the It has often been noted that stigma and discrimination
pediatric HIV market is small compared with the adult significantly affect access to HIV prevention, treatment,
market. In addition, procuring pediatric ARVs can be care, and support. According to research done by the
arduous in resource-limited settings.20 Program data International Center for Research on Women, stigma
show that stock-outs of ARVs occur more frequently for can result in loss of livelihood, poor care at health
pediatric formulations than for adult medicines.21 facilities, and withdrawal of care and support at home.25
Administering treatment to children can be particularly This is particularly important because children living
difficult. Pediatric ARV formulations for infants and with HIV depend on their caregivers to bring them to
toddlers are often produced in liquid or syrup form and the facility for testing, treatment, and care. Stigma and
are difficult for children to take because of the volume discrimination also deter older children and adolescents
and poor taste. These formulations are also problematic living with HIV from seeking care for themselves.26
for health care workers and caregivers because the drugs The fear of stigma, discrimination, and even potential
may require refrigeration, which is difficult in low- violence by family, peers, community members,
resource settings with limited access to electricity. ARVs teachers, and health care workers prohibits the access
are hard to store and transport due to the large volume, of children living with HIV to the services they need
and they have complicated dosing.22 Formulations for to survive. If an AIDS-free generation is to be reached,
older children who can swallow pills are also challenging programs and policies must address the “social, cultural,
because of the large pill size and heavy pill burden. economic, and legal barriers that inhibit access to health
The fact that ARV dosages for children depend on age services for all people living with and affected by HIV/
and weight band categories makes it complicated for AIDS.”27
healthcare workers and caregivers to prescribe and Children living with HIV can face continued stigma and
administer. discrimination at home, at health facilities, within their
In addition, children often need to switch to second- communities, and at school. This can be particularly
or third-line drugs because of drug resistance and challenging for children who are already going through
treatment failure. According to a recent study in sub- many other emotional changes as they develop from
Saharan Africa, pretreatment HIV drug resistance children to adolescents and into young adults. Children
was higher in PMTCT-exposed infants compared to who face stigma and discrimination are at risk of not
PMTCT-unexposed infants.23 In fact, nearly 98% of adhering to treatment, thus weakening their overall
children living with HIV who fail first-line treatment health outcome. To combat stigma and discrimination,
have documented drug resistance.23 Drug resistance is “efforts to normalize HIV and ensure that adults and
an increasing area of focus and poses an added challenge children have accurate information about the virus are
to pediatric treatment that “if not addressed … may essential.”26
reduce the durability and effectiveness of currently

11
 AIDS Free
Increased efforts are needed to reach children and adolescents living
with HIV with care and treatment services to ensure that they remain
AIDS-free.

For children living with HIV, access to ART is a matter of The current response to the HIV epidemic is not on track
life or death. A recent study across Africa, Asia, and the to reach these crucial treatment targets for children. To
Americas concluded that many children younger than reach the AIDS Free goals, countries need to address
two years of age who are living with HIV begin treatment barriers to treatment access for children and adolescents
too late and already have significant immunodeficiency, in their specific country context, including making sure
leading to high mortality rates.4 As part of the Start Free, that the ARVs available in country are in line with
Stay Free, AIDS Free frameworkiii, launched in 2016, it is WHO recommendations for optimal formulations; that
imperative that all children living with HIV have access services are tailored to the specific needs of children and
to ART for their own health and to reduce the risk of adolescents; and that viral load monitoring is standard
further HIV transmission. practice to better detect treatment failure. The ambitious
AIDS Free goals aim to bring optimal treatment options
AIDS Free Goals
to children and adolescents living with HIV and, in so
• Provide 1.6 million children (0–14 years) and 1.2 doing, to help reduce the stigma and discrimination
million adolescents (15–19 years) living with HIV with associated with HIV.
ART by 2018.
• Provide 1.4 million children (0–14 years) and 1.0
million adolescents (15–19 years) living with HIV with
ART by 2020.

The Start Free, Stay Free, AIDS Free framework is led by the Joint United Nations Programme on HIV/AIDS (UNAIDS), the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR),
iii

the United Nations Children’s Fund (UNICEF), the World Health Organization (WHO), and the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).

12
Key Messages Key Facts

• Diagnosing children living with HIV and initiating • In 2016, only 43% of children living with HIV
them on treatment as early as possible is critical received ART, compared with 54% of adults.
for their survival, growth, and development.
• In 2016, 120,000 children (0–14 years) died
• Point-of-care EID, testing of older children at of AIDS-related causes.4
various health entry points, and community-
based testing and treatment will help link more • Children make up around 6% of the
children living with HIV to treatment. population of people living with HIV but
account for 12% of AIDS-related deaths.
• Children must be retained in care and treatment
services to monitor disease progression and • 98% of children failing first-line treatment
overall health and to appropriately adjust for HIV have drug resistance.23
treatment regimens.
• The limited pediatric formulations for ART
• Efforts should be made to reduce loss to follow- reduce the options for children living with
up among HIV-positive mothers and their infants, HIV to access the treatment they require.
including through better monitoring of mother-
baby pairs and provision of services that are closer • Existing pediatric ARV formulations can be
and more convenient for children and caregivers. poor tasting and difficult to swallow, can be
challenging to store, and can have complex
• Improved training of health care workers is needed dosing instructions.
to increase capacity for testing, counseling, and
treating HIV-positive children. • Approval of new pediatric ARV formulations
lags behind that of adult ARV formulations,
• Countries should adopt and implement updated which means that children must wait years
WHO treatment guidelines to ensure that optimal for these new and optimal drugs.
treatment regimens are provided to all children
living with HIV. • Smaller markets for pediatric ARV
formulations make new drug developments
• Increased efforts from pharmaceutical companies and procurement of approved pediatric
to prioritize pediatric drug research and formulations challenging.
manufacturing of approved generic formulations
are needed to assist with drug availability in • Stigma directly and indirectly affects the
countries. health of people living with HIV.

13
PHOTO: ERIC BOND/EGPAF, 2017

14
Adolescents and HIV
AIDS is a major cause of death among adolescents (10–19 years), both globally and
in Africa.14

Central to OAFLA’s strategic mission is improving the for HIV. While progress has been made and HIV is no
health and well-being of women and children living longer the leading cause of death for adolescents, it is
with and affected by HIV/AIDS, including adolescents. still a major threat and needs focused attention through
Experts are looking closely at populations that are a comprehensive approach in order for the risk to
most vulnerable to HIV/AIDS, resulting in more adolescents to continue to decline. Adolescence is in and
targeted approaches to addressing the pandemic. This of itself a sensitive time; adding the complexities of HIV
approach means additional attention is being placed makes things even more challenging.
on adolescents who are both living with and at risk

Growing Up with HIV

With the recent progress made in identifying and enrolling younger children living with
HIV on treatment, more children are surviving into adolescence and “living positively”
than ever before. This generation of children who have been living with HIV most of their
lives face unique challenges as they experience adolescence.

Treatment adolescence, it is vital that they remain in care and

treatment services so they can have consistent disease
As the global response to HIV continues to scale up, monitoring to detect treatment failure and modify their
children living with HIV will be increasingly identified treatment regimen appropriately to keep them healthy.
during infancy and enrolled on treatment early in life. This is particularly critical for adolescents as they may
While this is critical for the child’s survival, lifelong have less caregiver support, may be managing their own
ART has many challenges. As seen in countries with health, or may be less adherent to ART than adults and
successful EID and pediatric treatment, adolescents who younger children.
have been enrolled on ART for years require ongoing
Many older children and adolescents who have been on
medical care to identify, manage, and treat any health
treatment for years may also be experiencing treatment
conditions associated with ART, such as bone health
fatigue. Children and adolescents who have not been
and renal health related issues.28 In addition, there are
made aware of their status may not understand why
high rates of HIV treatment failure among adolescents5
they have to take medicine every day. Children who
and lower rates of viral suppression, according to
feel healthy may not think it’s necessary to remain on
population-based HIV impact assessments released in
treatment, since they do not feel sick. Others may be
2017.29 Viral suppression, in addition to helping lower
tired of the negative side effects caused by ARVs or the
the risk of transmission of HIV, has proven increased
sheer volume of pills required.
health benefits. This means that as children age into

15
Treatment (Continued) into consideration their maturity and mental capacities
to appropriately prepare them to successfully manage
Poor adherence leads to drug resistance, treatment living with HIV. Yet, many countries do not permit
failure, and the need to switch to second- and third-line children under 18 to access HIV treatment or counseling
drug regimens, which may be more burdensome, more independently.30
expensive, or less available. Adolescence is a critical
time to reinforce and support treatment adherence. Stigma and Discrimination
AIDS-related adolescent deaths are preventable with
Stigma and discrimination have a substantial influence
early initiation of ART, adherence to treatment, and
on adolescents, especially when it comes to ART
retention in care.
adherence. Adolescents may not visit the clinic for
health visits and may not adhere to their treatment
regimens for fear of being identified as HIV positive.
Transition of Care
This fear prevents adolescents from disclosing their HIV
The care children and adolescents receive needs status to their sexual partners, possibly putting others
to change and adapt with them as they grow and at risk. Negative and judgmental attitudes from health
develop. Whereas young children are dependent on care workers toward adolescents living with HIV have
their caregivers for their overall health and well-being, a significant impact on retention in care and treatment
older children and adolescents become increasingly services as well. Adolescents need support from their
independent and begin to take health decisions into families, friends, communities, and health care providers
their own hands. It is important that, during this so they can be empowered to seek out assistance and
transition, adolescents receive quality, age-appropriate adhere to treatment. Psychosocial support groups
care to support them in their health decisions. Training specifically tailored to or led by adolescents can help
and sensitizing health care workers to engage with those living with HIV come to terms with their diagnosis
adolescents living with HIV can greatly improve the and understand the importance of treatment adherence,
quality of care adolescents receive and, in turn, impact all in a safe and supporting environment.
their willingness to seek health care services. Because
adolescents are children whose maturity is quickly
evolving, they must be supported in making the right
health decisions. Adolescents require services that take

16
At Risk for HIV
While many adolescents living with HIV were infected through MTCT,5 it is crucial to also
address the HIV-negative adolescents at risk for acquiring HIV. Age-appropriate HIV
prevention and sexual and reproductive health counseling and education are essential
for those at risk of HIV to ensure that they have access to the quality services they need
to remain HIV-free.

Access to Services and Information it must include not only the medical procedure but
also the testing, counseling, and education on HIV
Accurate HIV knowledge is critical for prevention transmission, as well as the importance of continued
measures to be successful. However, many adolescents use of other preventative methods, such as condoms.
lack the basic knowledge of HIV needed to inform their All of these components complete the VMMC package
health decision making. Many of the factors that restrict and fully inform young males about their risks for HIV.
adolescents’ access to information and services and that If adolescents are to remain HIV-free, they need to be
put them at risk for HIV are linked to prohibitive policies armed with the knowledge and tools necessary to do so.
and structures. For example, some adolescents who seek
HIV testing and counseling or sexual and reproductive Special Considerations for Adolescent Girls
health education may have difficulty accessing these Adolescent girls in particular face specific challenges
services due to age-of-consent laws or requirement of that put them at additional risk for HIV. Studies have
a legal guardian to be present. This prohibits access shown that women acquire HIV at a younger age
to valuable services and information that could help than men, typically from older male partners.5 Age-
adolescents keep themselves safe and healthy. WHO disparate sexual relationships, sometimes forced by
recommends that age-of-consent laws for HIV testing girls’ precarious economic situation or the practice of
take into consideration maturity; it also calls for clear child marriage, and gender-based violence create an
language on this issue in all of its health policies and unequal power dynamic within a relationship, which
legislation. Restrictive laws for age of consent or even can lead to the inability to negotiate safer sex practices.
vague language that does not provide clear guidance According to the Girls Not Brides partnership, child
to health care workers on this issue further impede brides are often “deprived of their fundamental rights
adolescents’ access to these lifesaving services.30 to health, education and safety” and are “at greater risk
Geography also plays a role in access to information, of experiencing dangerous complications in pregnancy
with those living in rural settings being less likely and childbirth, contracting HIV/AIDS and suffering
to have accurate knowledge of HIV.12 In addition, domestic violence.”32 Limited access to education
adolescents who are able to access services may be met impacts young girls’ ability to learn about HIV and
with negative attitudes and judgment from health care sexual and reproductive health and to equip themselves
workers, weakening the impact of these services and with the tools and knowledge necessary to build
further hampering access. economic opportunity and otherwise reduce the risk of
One prevention service that has proven effective for young HIV exposure. All of these risk factors further highlight
males is voluntary medical male circumcision (VMMC), why it is important to make HIV prevention—including
which can reduce female-to-male sexual transmission of PrEP (when available in country), care and treatment
HIV by nearly 60%.31 VMMC is particularly appealing services, and sexual and reproductive health education
because it is a one-time intervention that can provide programs—accessible and tailored to adolescents and,
partial protection for men from HIV and other sexually in particular, to girls.
transmitted infections. For this service to be effective,
17
 Stay Free
Children born HIV-free because of successful PMTCT cannot be
forgotten. Continued HIV prevention services are needed to ensure
they remain HIV-free as they grow up through adolescence and into
adulthood.

As part of the Start Free, Stay Free, AIDS Free Accurate knowledge of HIV transmission and prevention
frameworkiv, launched in 2016, the Stay Free goals aim is required for adolescents and young people to protect
to reach adolescents and young people most vulnerable themselves. However, too few have an accurate
to acquiring HIV with prevention services to ensure that understanding of HIV—in fact, a 37-country study
those who are born HIV-free, stay HIV-free. between 2011 and 2016 demonstrated that only 36% of
young men and 30% of young women aged 15–24 had
Stay Free Goals
an accurate understanding of how to prevent HIV being
• Reduce new HIV infections in adolescents and young sexually transmitted.4 If achieved, the Stay Free goals
women (10–24 years) to less than 100,000 by 2020. will make sure this vulnerable population has access to
• Provide VMMC for HIV prevention to 25 million more the medical and educational programming they need to
men by 2020, with a specific focus on young men (10– stay HIV-free. This includes ensuring that young girls
29 years). have access to secondary and higher education, as well
as sexual and reproductive health services, and that
harmful practices like early and forced child marriage,
which increase a girl’s vulnerability to HIV, are reformed.

iv
The Start Free, Stay Free, AIDS Free framework is led by the Joint United Nations Programme on HIV/AIDS (UNAIDS), the U.S. President’s Emergency Plan for AIDS Relief (PEPFAR),
the United Nations Children’s Fund (UNICEF), the World Health Organization (WHO), and the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF).

18
Key Messages Key Facts

• Adolescents need specific care and treatment • In 2016, there were 260,000 new HIV
services tailored to their unique needs as they infections among adolescents (15–19
transition from child care to adult care. years).33

• Breaking down barriers, such as legal restrictions • The majority of adolescents living with HIV
on the age of consent, will provide easier access were infected through mother-to-child
for adolescents to prevention, care, and treatment transmission.14
services.
• Treatment failure is highest among
• Health care workers must be trained to adequately adolescents living with HIV, while treatment
treat, counsel, and educate adolescents on HIV adherence is lowest among the same age
and to provide adolescent-friendly services. group.14

• Emphasis must be placed on adherence to • AIDS-related illnesses are a leading cause of

treatment, including through psychosocial death among adolescents14 and for women
support programs to help combat underlying of reproductive age.9
reasons for poor adherence, such as stigma and
discrimination. • AIDS-related deaths have declined among all
age groups except adolescents.32
• Young women and girls must be a priority in HIV
and sexual and reproductive health programming • In 2016, approximately 22% of new infections
if the end of AIDS by 2030 is to be reached. globally were among young women aged
15–24 years.9
• Ending new HIV infections in adolescent girls will
require tackling tough issues like child marriage • In 2016, new infections among adolescent
and gender-based violence. girls and young women (15–24 years)
were 44% higher than among their male
counterparts.9

• In sub-Saharan Africa, girls account for three

out of four new HIV infections among 15–19
year olds.14

19
PHOTO: ERIC BOND/EGPAF, 2017

20
Action Needed by First Ladies
Africa’s first ladies can drive critically important changes in their respective countries,
ensuring that progress is made toward achieving an AIDS-free generation.

First ladies have the power to influence the behavior of • Meet with government officials, health care providers,
their citizens because they are regarded as “mothers of and implementing organizations to disseminate the
the nation.” They have significant clout that can result in latest information about the HIV epidemic in country.
positive change in the issues they are passionate about. • Visit hospitals and service providers to gather
First ladies are perceived as strong collaborators, able to firsthand knowledge of the challenges families face
bring different stakeholders to the table to drive action in getting testing and treatment for their children
in a way that crosses the political divide and touches all and to gain an understanding of how HIV testing of
citizens. First ladies undertake numerous HIV-related newborns, children, and adolescents is performed and
activities. This section identifies three broad areas that followed up. While visiting facilities, take note of the
need action by African first ladies in order to drive the achievements made in reaching families with these
biggest change in addressing elimination of MTCT and services and then use those as examples to further
successful pediatric and adolescent HIV prevention and advocate for the scale-up of successful interventions
treatment. at additional facilities throughout the country.
Raise Awareness • Enhance public understanding of pediatric HIV and
the barriers facing both children and adolescents in
One way to improve pediatric and adolescent HIV
accessing care and treatment—for example, through
prevention and treatment is by raising awareness of
public meetings, awareness-raising events, or media
the issues. Because the first ladies can bring significant
campaigns.
attention to the issues being addressed, they play an
important role in changing the epidemic among children • Promote HIV testing of infants, children, adolescents,
and young people. For example, by raising awareness at and adults as an important aspect of health services.
the community level, first ladies can help families and • Educate the public about the government’s
health care workers better understand the importance commitment to ensuring universal access to HIV
of PMTCT, EID, and initiation of treatment, leading to treatment by children and adolescents who need it.
improved health outcomes for HIV-exposed and HIV-
• Speak out against HIV-related stigma and
infected infants and their mothers. By raising awareness
discrimination affecting children, adolescents,
of the challenges of reaching adolescents with lifesaving
and their caregivers at home, in schools, and in the
services, first ladies can encourage ministries of health
community.
to change relevant policies, develop more youth-friendly
services, and put out new guidelines or training manuals • Encourage families and caregivers of HIV-exposed
to sensitize health care workers on this issue. This, in infants and children to go for testing and know their
turn, can lead to better care and result in increased status; for those who are HIV-positive, encourage
uptake of services. Some ways to raise awareness are as them to receive treatment and care and to adhere to
follows: their appointments and medications.
• Use social media to educate and raise awareness of
these issues, especially to communicate with young
people.

21
Mobilize Resources Influence Policymakers and Agenda Setters
Adequate funding is necessary to effectively reach Instituting policies to better address the needs of
children, adolescents, and their families with lifesaving infants, children, and adolescents is one way to improve
HIV services. First ladies can use their influence to HIV treatment and prevention in these vulnerable
mobilize national and international resources to support populations. First ladies have the ability to galvanize
service delivery, health care worker training, pediatric- various stakeholders around an issue that they care
and adolescent-specific HIV support groups, and other about. Addressing pediatric and adolescent HIV
vital components of the HIV/AIDS response. Financial, prevention and treatment can result in tangible gains for
material, and technical resources are paramount in the country by helping to create and maintain a healthy
addressing the pediatric HIV treatment gap. First ladies and developing young population. The following are
have the wherewithal to bring various partners and some suggestions:
stakeholders together to ensure that there are adequate • Become familiar with the types of pediatric HIV
and sustainable resources to facilitate pediatric and treatment available and the gaps in country, as well
adolescent HIV prevention and treatment. Public- as the areas where various stakeholders would require
private partnerships and corporate social responsibility greatest support.
are valuable approaches to consider and promote. The
following items are also important ways to mobilize • Identify the key influencers and policymakers to
resources: champion pediatric and adolescent HIV prevention
and treatment in country and have roundtable
• A thorough understanding of resource gaps in the discussions with them to raise awareness of the issues
response to both pediatric and adolescent HIV and get them involved.
in country will enable first ladies to advocate for
necessary budget allocations to bolster treatment and • Build support with appropriate stakeholders to
prevention services for all children and adolescents address the needs of children living with HIV and
who need it. explore what remedies can be put in place through
government action.
• First ladies can work with local organizations to
advocate for additional domestic and international • Advocate for changes in the policies and practices that
resources for community-based prevention, allow inclusion of pediatric HIV testing in maternal
treatment, and support services for women, children, and child health centers, nutrition centers, hospital
and adolescents. inpatient wards, and other relevant health programs.

• First ladies can collaborate with other like-minded • Work with policymakers to encourage enrollment of
leaders to advocate for increased resources for girls in education through secondary school.
pediatric-focused HIV research and promote • Remove or improve age-of-consent laws that limit
expedited registration, adoption, and availability of access to HIV and other health services for adolescents.
improved pediatric ARV formulations. • Eliminate child marriage in both law and practice and
• Engaging in strategic partnerships with public and work to enforce laws against gender-based violence.
private actors will help address gaps in programs, • Promote social protection programs, such as cash
services, or technologies. transfers, to reduce environmental challenges such as
food insecurity, which lead to risky behaviors.

22
Tools for Engagement
The following list of tools includes proposed steps for first ladies and their staff members
to further the elimination of MTCT and foster pediatric and adolescent HIV prevention,
care, and treatment efforts in country. Most of these actions are currently being used by
first ladies to advance issues related to HIV and maternal, newborn, and child health.
These tools will assist first ladies in adapting existing actions and in taking on new
ones for issues pertaining to this tool kit. This is not a comprehensive list; rather, it is a
compilation of potential opportunities for engagement.

Engagement with Diverse Leaders • Meet with the ministry of health, the ministry
of finance, members of parliament, and other
First ladies can engage with many levels of leadership government officials to discuss the status of pediatric
in their countries and communities to educate them on and adolescent HIV/AIDS in country and the steps
EMTCT and pediatric and adolescent HIV prevention, taken to improve PMTCT and HIV testing, including
care, and treatment. By doing so, the first ladies can EID, pediatric treatment, and adolescent prevention
also gather further support for action. These levels of and treatment services. Discuss the opportunity for
leadership include political figures, community leaders collaboration through public-speaking opportunities,
and members, religious authorities, civil society leaders, joint campaigns on the issue, support of legislation,
and members of the media, among others. and so on.
• Organize and participate in roundtable discussions Sport
with community leaders about pediatric and
adolescent HIV/AIDS, including issues faced in Sporting events have been used over the years to break
the community, and emphasize the importance of the barriers of age, color, tribe, and gender, among
antenatal care, including PMTCT services, early and others, and can have the effect of focusing people on an
continuous HIV testing of pregnant women, HIV issue they did not realize needed attention. With sport,
testing of infants (including EID), early initiation of the public cares about winning together as a nation—in
HIV treatment for both children and adults, retention succeeding. Sport offers a great opportunity to rally the
in care, and continued access to age-appropriate public to raise awareness and funds to support EMTCT
testing, counseling, and additional health services and pediatric and adolescent HIV prevention and
as children grow into adolescents. This will help treatment.
educate community leaders and provide them with • Organize sporting events to raise awareness about
an opportunity to express their concerns and suggest the importance of antenatal care, HIV testing,
constructive solutions to the issues faced. and pediatric and adolescent HIV prevention and
• Organize and lead meetings or workshops with treatment, as well as the significance of early initiation
political figures, religious leaders, civil society leaders, of ART. Such events could include a run/walk or a
members of the media, and so on, on the importance of community activity day that includes several sport
and challenges to PMTCT and pediatric and adolescent activities for children and adolescents and that
HIV treatment and prevention services. The first ladies incorporates an education booth for parents and
can provide remarks at these workshops to encourage guardians. These events can even be fundraisers and
leaders to continue existing programs and strengthen could include a merchandising element to allow for
programs that address these issues. longer-term impact of event messaging (e.g. through
• Engage with partner organizations and stakeholders T-shirts, caps, bottles, and other items with pediatric
around program launch events or close-out events to HIV messaging).
provide remarks supporting this important work. 23
Culture, Arts, and Music Community Events
Similar to sport, cultural events, art shows, and musical Because many citizens appreciate the role of the first
performances all have the ability to bring community lady as the “mother of the nation,” her direction and
members together for a common interest. These events mentorship are taken seriously at the community level.
can be both entertaining and educational for the whole Thus, first ladies can engage in various community-level
family to enjoy. By incorporating educational messaging activities that raise awareness and increase uptake of
on health issues, such as pediatric and adolescent HIV services due to reduced stigma and discrimination
HIV, community members are provided with a unique at home and in the community.
opportunity to learn about lifesaving interventions they • Educate women, children, and families on the
may otherwise have avoided due to such social barriers importance of pediatric and adolescent HIV prevention
as stigma and discrimination. and treatment through participation in community
• Host cultural events involving musicians, artists, and days. These events provide an opportunity for the first
actors that raise awareness. Community members ladies to engage directly at the community level. At
would attend these events for the entertainment while community days, information is shared, questions can
taking away lifesaving information on pediatric and be answered, HIV testing may be offered, and families
adolescent HIV prevention, care, and treatment, as can be encouraged to attend antenatal care visits, to
well as the importance of antenatal care, early HIV go to health facilities for delivery, and to bring their
diagnosis, and early initiation on ART. These events infants in early for HIV testing and initiation on
could result in increased uptake in services due to treatment if they are living with HIV.
community awareness. Such events may also be • Sensitize community members and leaders on HIV
coupled with testing for HIV or other communicable through other planned activities within the community
or non-communicable diseases. to help reduce stigma and discrimination.
• Reduce stigma and discrimination through
educational events at schools. First ladies can lead
campaigns, develop educational material, and speak
with students on the importance of HIV treatment
and of adhering to ART. Reducing stigma in schools
makes children more likely to remain in school and to
be able to stay on treatment without fear of stigma or
discrimination by their peers.
• Engage with teen mother support groups, providing
motivational speeches and words of encouragement
for continued engagement with the health system.
First ladies can share their experience as mothers and
emphasize the important role teen mothers will play
in shaping the life and health of their child.

24
Media Engagement Issue-Specific Campaigns
By engaging with community members and leaders First ladies have the incredible opportunity to leave
through print news, radio, and digital and social media, a lasting legacy. One way to do this is through issue-
first ladies have the opportunity to spread an important specific campaigns. Making EMTCT and pediatric and
message to a diverse audience with incredible reach. adolescent HIV a landmark issue will help first ladies
This helps further amplify important messages around usher in an AIDS-free generation in country. This will
HIV testing, care, and treatment and could result in not only resonate with citizens now but will also be
increased uptake of services and reduced stigma and remembered in years to come.
discrimination. • Participate or take the lead in an awareness-raising
• Reach out to media outlets, including radio and TV, campaign to garner political and community support
about giving interviews on the importance of PMTCT through engagement with high-level political figures
services, early pediatric HIV testing and treatment, and celebrities.
and continued HIV prevention, counseling, and • Visit health facilities and hospitals across the country
treatment services for adolescents in order to raise to speak on the importance of EID, pediatric HIV
awareness across the country. treatment, and adolescent prevention, care, and
• Work with media outlets to author an opinion or treatment in support of issue-specific campaigns.
lifestyle piece from the first lady on the issue of
Raise Funding and Resources
pediatric HIV treatment, the importance of EID and
pediatric treatment, the persistent challenges with By supporting resource mobilization for pediatric and
adolescent HIV prevention and treatment, and what adolescent HIV, first ladies can highlight the important
still needs to be done regarding PMTCT. Media pieces role that funding plays in reaching an AIDS-free
authored by the first lady are likely to get significant generation. Without resources, all the interventions that
attention because of her important stature in country. are proven successful will not be able to be implemented.
• Reach out to media outlets to educate them on these Strong resources are crucial to address the treatment gap
important issues so that they are better informed and ensure that children living with HIV have access to
when writing or speaking on the issue. When media the care and treatment they need to survive and thrive.
personnel are educated on these issues, they will be First ladies are in a position to help advocate in country
able to produce more compelling pieces that will help for these needed resources.
shed light on the specific challenges of pediatric and • Mobilize funding for specific pediatric and adolescent
adolescent HIV in country. HIV initiatives in country through the first lady’s
• Work with local media to host a Twitter chat, foundation or office and the OAFLA secretariat.
engaging with key issue champions and celebrities to These resources could be used to scale up pediatric
discuss lifesaving interventions and the importance and adolescent HIV testing, treatment, and service
of treatment adherence. These events can also help delivery; fund research for new treatment; and
sensitize the community in an effort to reduce HIV- support training for health care workers—among
related stigma and discrimination. other activities.

25
Opportunities for Regional and
National Collaboration
First ladies can work in their regions or collaborate at the continental level to motivate,
educate, and communicate on issues related to maternal, pediatric and adolescent HIV.
Many of the activities can be done jointly as part of a continent-wide approach or done
individually by country.

OAFLA, which was primarily established to be a First ladies can also leverage the technical knowledge
collective voice for some of Africa’s most vulnerable and experience of various implementing partners, such
people, has evolved into an institution capable of as EGPAF, to ensure they have current and accurate
providing continent-wide leadership through advocacy information to address the challenges highlighted in this
in the field of HIV and the wider scope of maternal and document. By inviting partners to sit in their national
child health. By virtue of having a strong secretariat, steering committees, first ladies can benefit from the
OAFLA offers many opportunities for first ladies to technical expertise of these partners. In addition,
work in concert with one another and to leverage one first ladies may be able to tap into other financial and
another’s knowledge and experience. material support to enable implementing partners to be
effective in their work and to help the African continent
end AIDS.

26
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For additional information contact:

Hanna Mekonnen
Programme Officer
Organisation of African First Ladies
against HIV/AIDS (OAFLA)
Tel:+251-115-508069/+251-118-962998
Email: hanna@oafla.org
Website: www.oafla.org

Rhoda Igweta Murangiri

Associate Director,
Public Policy and Advocacy
Elizabeth Glaser Pediatric AIDS
Foundation
Tel: +254-204-454081/2/3
Email: rigweta@pedaids.org
Website: www.pedaids.org

Published January 2018