“Leadership is not about titles, positions, or flow charts. It is about one life influencing another.” John C. Maxwell.
To realize the end of AIDS by 2030, it is critical that every country accelerates the reduction in pediatric AIDS. For countries with a concentrated epidemic and those with low incidence and prevalence rates, getting to zero new infections in infants and children is possible, as reflected by recent certification efforts in Belarus, Cuba, the Republic of Moldova, and Thailand.1 However, for many countries in Eastern and Southern Africa,2 where the incidence and prevalence are still high, much work remains. As infection rates decline, countries with generalized epidemics will need to prioritize areas of high incidence. Partner support in these focal areas will be critical for at least the next decade to ensure global success, and intensified political commitment to ending new pediatric infections will be needed to make this possible.
During the 5 years of the Global Plan Towards the Elimination of New HIV Infections among Children by 2015 and Keeping their Mothers Alive (Global Plan) (2011–2015), significant programmatic progress was achieved, linked with increased political momentum. It was this combination of political will and commitment at the country level, together with the assistance of key stakeholders and technical partners, that drove this progress.
Unfortunately, for the greater part of the history of the global AIDS epidemic, political leadership was often defined by denial, silence, and delay. In those early days, leadership came primarily from a host of civil society advocates and activists who were fighting desperately to save their communities, children, partners, and countries from a disease that had already taken too many. These men and women struggled to raise the visibility of the pandemic and force political and policy action from governments that largely resisted them. Any discussion of leadership and its role in curbing the global AIDS epidemic must acknowledge that these individuals laid the foundation on which today's progress has been built.
Over time, the face of leadership in the fight to end the AIDS epidemic evolved as major organizations like UNAIDS and the Global Fund to Fight AIDS, Tuberculosis, and Malaria (Global Fund) were established and leaders began to take meaningful steps to address the pandemic. Behind the success of the Global Plan lies many years of hard work across continents to reduce new infections in children. It also took those at the senior levels listening to what the data on the ground were telling them: that ending pediatric AIDS was possible and that the tools to do so already existed.
To understand the role that leadership has played in realizing the vision of the Global Plan—and the role that it continues to play in our efforts to end the epidemic—we sought to identify and interview leaders at varying levels, with an emphasis on community, district, and country leadership, as these were the levels where much of the hard-fought progress occurred. Through their own words and experiences, these leaders describe what it means to lead, and they illustrate the leadership that is demanded and demonstrated in starkly different professional and personal contexts, including national and regional political leaders, doctors, nurses, mentors, and community leaders on the ground.
The Global Plan outlined 6 key conditions to drive progress toward success:
- All women, especially pregnant women, have access to quality life-saving HIV prevention and treatment services for themselves and their children.
- The rights of women living with HIV are respected, and women, families, and communities are empowered to fully engage in ensuring their own health, especially the health of their children.
- Adequate resources—human and financial—are available from both national and international sources in a timely and predictable manner while acknowledging that success is a shared responsibility.
- HIV, maternal health, newborn, and child health and family planning programs work together, deliver quality results, and lead to improved health outcomes.
- Communities, in particular women living with HIV, are enabled and empowered to support women and their families to access the HIV prevention, treatment, care, and support that they need.
- National and global leaders act in concert to support country-driven efforts and are held accountable for delivering results.3
In their own way, each person interviewed touched on one or more of these conditions, creating an environment for change and catalyzing new approaches.
In the foothills of Mt. Kilimanjaro, Senior Nurse Zawadiel Hillu has been fighting for the health of her fellow Tanzanians for more than 3 decades.
When asked why she chose to become a nurse she replied, “You know what happened, when I was a little girl in primary school, my mom was sick. And really the nurses played a big role in saving the life of my mom. So from there I was interested in becoming a nurse.”
Despite the fact that 1.4 million people were still living with HIV in the United Republic of Tanzania in 2015, the country has made significant progress, achieving a 69% reduction in new pediatric HIV infections since 2009.4 Today, 86% of pregnant women living with HIV are receiving antiretroviral medicines to prevent mother-to-child transmission (PMTCT).5
In her work at the Kilimanjaro Christian Medical Center (KCMC) as senior nurse, Nurse Hillu leads the PMTCT program, and she has seen this progress firsthand. “In the year 2000, when the PMTCT program started as a pilot study,” she remembers, “I was among the nurses who were trained as a trainer for others. Later on, in the year 2005, I was among the team at KCMC who were involved in establishing PMTCT services. The changes which I'm proud to see are the number of HIV infected pregnant women is decreasing, the prevalence rate is decreasing. When you compare when we started and now, there are big changes.”
For Nurse Hillu, the success that she and KCMC have enjoyed starts with the community they serve, sharing information, and getting them engaged. “Firstly important is community awareness,” she says. “Getting the community involved means going through the influential people in the community, like the religious leaders and the local government leaders.”
Throughout our discussion, Nurse Hillu spoke passionately and often about the teamwork she cultivated among her colleagues to get results. “I never like to work alone. In case of any difficulty I consult others, so I appreciate the teamwork being carried out at KCMC. Teamwork is very important, because you know we are human beings. And when we work as a team, we discuss as a team, and we brainstorm for whatever, because I'm normally very good at innovating and creating. So I put those issues on the table for the team and we do discuss.”
Looking forward to the next few years, Nurse Hillu's goals are straightforward and succinct. “In the future, I would like to see all children free from HIV. And to see the number of HIV infected children decrease, and increase the number of children who are free from HIV.”
Zambia achieved a 69% reduction in new HIV infections among children between 2009 and 2015. In the same period, the percentage of pregnant women living with HIV on treatment rose to 87%.6 Traditional leaders and structures have played an influential and important part in this success at the community level.
Her Royal Highness Nkomeshya Mukamambo II has been the Chieftainess in Lusaka Province for 45 years. Throughout this time, she has seen and enabled dramatic change. “I ascended to the throne in 1971, in April,” she says. “I have seen the seriousness of this problem. And I also understand that this cannot be left to government alone. I think it is important for all to put our heads together, because we are the people who feel the pain. I am a chieftainess, and for me to be a chieftainess, I have a people. And I need to look after them, to understand their problems and the issues that affect them.”
She remembers the difficulties when she first ascended. “When I became a chieftainess, the issue of health services in my chiefdom was not something one could talk about. It never existed.”
In response, she wasted little time in using her position and influence to change things. “What I did first, was to surrender my palace, my other residences to the government, which have been turned into health facilities to enable my people (and) their families' access to facilities in the area where they are. I also allocated land for construction of a district hospital and provided land for a number of clinics in the chiefdom. These services are now closer to where people are.”
As a traditional head of her community, she stressed the importance of leadership from the front. “When you are talking about HIV/AIDS and you are encouraging people to know their status, as a leader it is important to lead by example,” she explains. “During the first world PMTCT day, which was held in my chiefdom, I was the first one to be tested. I did it to demonstrate to the community at large the importance of testing, and to give courage to those who have fear and to show that they do not need to fear stigma.”
On the ever present challenge of stigma, she is optimistic about the strides her chiefdom has already made. “It's still a major problem,” she says, “but when you speak about it, people get open enough to talk about. They are no longer ashamed. By doing that, the issue stigma is being reduced, and we are hoping one day it will be gone completely.”
She feels the source of her strength as a leader comes from her intense bond with those she leads. “I am able to identify with the struggles of my people. I also listen very attentively, and consult before I provide any guidance. I get my motivation from seeing the improvement in the quality of life of my subjects.”
Looking toward the future and the challenges it holds for her people, she is clear about what is needed. “The challenges that are there are the resources—the means—to reach as many as possible. The will to do this work is there; the means to do this work is another issue.”
Zimbabwe has one of the largest HIV epidemics in the world, with an estimated adult HIV prevalence of 15%, which represents a total of 1.4 million people living with HIV.6 Despite this, major progress has been made in recent years: from 2009 to 2015, new HIV infections among children were reduced by 65%.4
A key facet of this success was effective and strategic implementation at the district level through the use of district focal persons (DFPs) like Letrishah Choruma. Before becoming a DFP, Letrishah had already established a career caring for the sick as a midwife and as a nurse.
“When the opportunity came to work full time as a DFP for PMTCT,” she says, “I grasped the chance, because it allowed me to work full-time with women, couples, (and) communities at large. And as a midwife, this motivated me to see mothers delivering babies who were HIV-free and the mothers taking (antiretroviral therapy) for their own health. It's always a joy to see a mother holding a baby with a future and a smile on their face.”
As a DFP, Letrishah played a critical role in ensuring that services were provided and needs were met across all the health facilities in her district. “I made sure that resources for smooth coordination and running of the program were available at all health facilities,” she explains. “This meant traveling the district and sourcing from Health Facility A, where there is overstocking, to Health Facility B, where there is shortage.”
To be effective in her work, building relationships with site and clinic staff was essential. “I involved the District Health Executive in site support and mentoring of the health facility staff, and this enabled us to build a very close working relationship with staff at each facility. We were able to attend to unique problems raised at each institution, which strengthened health worker skills.”
Personally, she reinforced these relationships through ready accessibility. “I would avail myself 24/7,” she recalls. “The health facilities staff would have problems; they might get a child that needs to be initiated and they are not sure. So they could call you at any time, whether it is a holiday (or) weekend, asking for advice.”
For Letrishah, this act of being a visible, consistent presence is a cornerstone of her approach to leadership. And when it came to motivating health workers, she was not afraid to encourage some friendly competition. “We held district review meetings after every quarter, and this stimulated competition amongst the health facilities,” she says. “Teams could ask questions (and) they could share ideas, and then at the end, they could go back and implement whatever they've learned. It motivates them to present the work that they are doing in front of all the other cadres. They really shine when they present their work.”
Perhaps the best evidence of Letrishah's strength and quality as a leader is revealed in the way she treats the people in her work and life. “I respect people whom I work with. I expect to take whatever it is you come with, and then we sit down and talk, and I give the opportunity to people to express themselves. I put myself at their level, and then we start from there.”
In 2015, 95% of pregnant women living with HIV in Uganda received antiretroviral medicines, exceeding the Global Plan goal of 90%. Uganda also has reduced new HIV infections among children by 86% since the Global Plan was launched.4
As the National Coordinator for the Ministry of Health PMTCT Program in Uganda from 2008 to 2015, Dr. Godfrey Esiru was instrumental in the decisions and discussions that enabled this progress.
“When we heard that there was a Global Plan coming aboard,” he recalls, “we actually intentionally delayed the review of our national PMTCT plan and waited until its release, so we could align our plan with it. And that's exactly what we did.”
When the Global Plan was officially launched and made its way to Uganda, Dr. Esiru immediately held discussions to put its recommendations into action. “Before (the Global Plan), the policy in Uganda was that only doctors were allowed to initiate (antiretroviral therapy),” he says. “But now, with the Global Plan, we are talking about decentralizing services to the other individuals or to the communities. And we were thinking, ‘how can we decentralize services if we still maintain the policy that it is only doctors who can initiate?'”
For Dr. Esiru, the answer was clear, and he led the push that resulted in policy change to allow initiation by other properly trained health workers. He remembers the debate as contentious. “I remember one time the commissioner of the clinical department in the Ministry of Health confronting me and telling me ‘Dr. Esiru, why do you want nurses to prescribe?’ And I told him, we are talking about the lives of women and children. If you don't want nurses to prescribe, are you happy if your wife or child is infected with HIV?”
Ultimately, the Global Plan played a catalytic role in Uganda because of the actions of Dr. Esiru and others to use it fully. “If we looked at our progress before the Global Plan, it was quite slow,” he explains. “The coming of the Global Plan changed our thinking and approach. It opened our eyes to actually understand those we have reached and those we have not. Before that, we were just reporting on numbers. But the Global Plan came with that kind of data utilization approach: the met and the unmet need.”
Dr. Esiru identified a willingness to lead through early action as a key to Uganda's success under the Global Plan—and as a necessary quality of good leadership. “That proactiveness is what good leaders need,” he says. “You have to preempt situations, look forward, anticipate the challenges, and act before they come in. We did that in Uganda: every time we took a step, we were trying to think what the result would be. And we used data to tell us what is happening, and then come up with innovations to address it.”
On the subject of his own leadership, Dr. Esiru is quick to turn the focus back to the people he served.
“At that time I didn't think I was an effective leader, but I had a passion for children and women. I thought I had the opportunity to prevent infections among children, because the science was there. We needed to just implement the science.”
“This is an extremely tragic history.”
This is how Dr. Mark Blecher describes the first chapters of the story of PMTCT services in South Africa.
“The transmission rate prior to the introduction of PMTCT was around 30%,” he recalls. “In this context, interventions were available, but they were very primitive. So we went through a period of 2, 3, 4 years where around 70,000 children were being infected a year. It's certainly one of the most sad and horrific episodes that we've ever been through in our country's history.”
Dr. Blecher was serving as National Treasury's Chief Director for Health and Social Development during this period, which culminated in the 2002 decision by South Africa's constitutional court that upheld the right of all HIV-positive pregnant South African women to access health care services for PMTCT.
Even with this ruling behind them, Dr. Blecher and the National Treasury still had to make the broader case for investing in HIV and specifically PMTCT. “PMTCT was easier to justify as an approach,” he explains, “because it was so cheap. And the Ministry of Health knew that they actually had the money, even when they went to constitutional court to say it was unaffordable.”
Antiretroviral medicines were a much more complicated sell. “At that point in time, the cost of (antiretroviral medicines) was maybe 100–1000 times the given cost we pay today. Yet the Treasury was of the view early on that the interventions were likely to be cost-effective. We realized up front it was a good thing to do.”
Dr. Blecher helped make the case for government-sponsored antiretroviral medicine coverage to Trevor Manuel, the Minister of Finance at the time. “It would be much better for government to pay for these medicines than for employers, because government could get these medicines much more cheaply… he agreed.” Financial support was secured, and they were able to finally start the South Africa antiretroviral medicines program.
Dr. Blecher continually cited the leadership and importance of civil society in efforts to end HIV in South Africa. “The work of activists generally in South Africa has been exceptional—those leading marches, being in the media, protesting.”
Looking forward, Dr. Blecher raised concerns that other African nations would be able to follow South Africa's example of providing substantial domestic health funding. “There are tremendous problems with domestic health financing,” he says. “There are many countries that are spending less than 1% gross domestic product on health. So we are trying to engage in a broader discussion with other countries around prioritization of health.”
“Women who are mothers and who find themselves next to the seat of authority. We are the voice of the voiceless.”
This is how the First Lady of the Republic of Ghana, Mrs. Lordina Mahama, describes the women who comprise the Organization of African First Ladies against HIV/AIDS (OAFLA), where she currently serves as President. Since its inception, OAFLA has consistently made the elimination of new HIV infections in children a priority. Their efforts and advocacy have contributed to the global reductions achieved under the Global Plan, with a 49% reduction in new pediatric infections in the Republic of Ghana from 2009 to 2015.4
Lordina Mahama feels that African First Ladies have a unique and important role to play in the fight against HIV in their countries. “Everybody sees you as their mother,” she explains, “so you have a very important job to do. There are so many people out there who don't have anybody speaking for them, fighting for them, and there's so much work to be done.”
The First Lady said she was very proud of the progress and efforts that have been made to reduce stigma and discrimination in communities. “In some countries, pregnant women who disclose their HIV status may be physically or verbally abused or socially marginalized. Other women who disclosed their status experienced rejection or were divorced by their partners. So I work with ambassadors (peer support providers) who use their life as an example to convince others to know their status. Now people are less afraid; people are less shy to come out and talk about HIV.”
One of things that initially surprised the First Lady the most with this work was the attitude of some men toward HIV care and treatment. “Some of them they feel that they are too big for HIV,” she says. “In many settings, traditional gender roles and cultural beliefs mean that men make decisions determining women's participation in HIV testing. We need the men; we can't do this without the men.”
The First Lady emphasized the importance of harnessing the power of media in raising awareness and education about HIV. “Even though you can't go to every corner of the country, you can't go to every village, or every town. The information is going out. The word is spreading.”
The First Lady defined effective leadership and her own established brand as a combination of internal character and external action. “To be an effective leader,” she explains, “you must have a vision and the ability to clearly communicate this vision. It requires dedication. My dedication is fuelled by a passion to address the needs of women and girls who are unable to reach their potential. And effective leaders must have strong morals and conviction. When a leader makes decisions based on morally acceptable values, it sends out a clear statement that they cannot be bought and that they will stick to the plan.”
Collaboration and delegation with her team are important principles of the First Lady's approach. “I operate an open door style of leadership: I establish open discussions for decision-making and I am open to new ideas. I also recognize the skills and strength of my team members and delegate to them accordingly.”
Most importantly, the First Lady points out that truly great leaders must transcend their duties. “I strongly believe that every effective leader must move beyond day-to-day functions and operate at a higher level that is focused on creating change in people and culture.”
THE CHALLENGE AHEAD
In the foreword to its final progress report, the Global Plan is characterized as “one of the finest global health achievements of recent time.”4 The significant progress that has been made is partly a result of the countless individuals who, when confronted with a great and urgent opportunity, decided to act. It is through their leadership that the promises of the Global Plan were put into practice.
Although such leadership cannot be accounted for by the traditional measures of title, prominence, or power, common themes did emerge in the interviews. Respondents prioritized the willingness to take risks (even when unpopular), to pre-emptively take action to address challenges and roadblocks before they became unwieldy, and to listen closely to colleagues and allow them to take the initiative, using personal strengths to move forward an agenda.
This underscores the fact that leaders often have to make a strong case that now is the right time to act and that this is the right place—even when others remain silent or insist that it is not the time or place.
Finally, it is important to recognize that each person interviewed in this article is only one of the thousands of individuals who comprise a truly global, multidimensional effort. Although this is a limited sample of those voices, it is meant to provide a snapshot of the invaluable, often unnoticed, work undertaken every day to make the core goals of the Global Plan not just a possibility, but a reality.
The authors extend their deepest gratitude to the individuals interviewed for their time, thoughts, and participation, as well as the many other staff members and colleagues who worked to arrange and facilitate these conversations and correspondence. They also thank Ryan Henson, Clare Dougherty, and Erica Martin (EGPAF) for their support and assistance in conducting and arranging interviews, writing, and editing for the article.