Over the past decade, there has been an unprecedented global response to AIDS epidemic.1 This infusion of new funding has led to a rapid scale-up of HIV treatment and prevention, and consequently, this has saved millions of lives and transformed communities around the world. Since 1999, the year in which the epidemic is thought to have peaked globally, the number of new infections has decreased by 19%.2 In 33 of the worst affected countries, the rate of new infections decreased by 25% or more from its peak.1 More than 2.5 million deaths have been averted through treatment since 1995, and currently 6.6 million people are receiving treatment in low-income and middle-income countries—nearly half of those eligible.1 The unprecedented global commitment of billions of new dollars enabled the world to mount a response that matched the scale of the epidemic. However, as clearly demonstrated by a review of national responses, successes have been due in large part to strong and innovative leadership. Here, we review some examples of such leadership.
Early leadership action in Brazil, Thailand, and Senegal averted millions of new infections. Brazil's leadership in 1996 in providing free universal access to highly active antiretroviral therapy not only helped slow the epidemic but also set an example for other developing countries to seriously consider treatment access and established precedents for the nearly 6.6 million people globally who are on treatment today. The rights-based approach to AIDS treatment influenced our approach to health and became a vanguard in the North-South debate on access to treatment and to significant reduction in the time lag between availability of treatment in the North and access to it in the South.
Donors continue to be key financiers of the AIDS response, with more than 50% of AIDS funding in 2010 coming from international sources. In Africa, the region hardest hit by the epidemic, less than 37% of the response is funded from domestic sources.3 Yet particularly in Africa, leadership commitment to reduce dependency on external aid and to move toward shared responsibility is key if the AIDS response is to be sustainable. Leadership commitment at the highest level and recognition of the need for an increased share of domestic financing and for innovative partnerships are highlighted below in examples from Nigeria and Botswana. These examples also highlight the centrality of multisectoral partnerships in achieving results.
The transformative power of collective action—where government, communities, and civil society act in one accord—are evidenced in examples from Uganda and India. These 2 examples also provide insight into the stewardship role of governments and the challenge function that civil society and communities need to play in making the response both effective and comprehensive.
Although resources are critical in scaling up an effective response, the results are often limited and not sustained without leadership—political, technical, and social.
BRAZIL: AHEAD OF THE CURVE—REAPING THE BENEFITS OF EARLY ACTION
In the 1990s, when HIV prevalence in Brazil was 0.4%, the World Bank estimated that Brazil would have 1,200,000 people living with HIV by 2000. One decade later, Brazil had 0.6% HIV prevalence and half the number of cases predicted—600,000. By comparison (although reflecting different epidemics and responses), South Africa had HIV prevalence of 0.8% in 1990 and 15.9% by in 2000.4 The disease burden in the beginning of the epidemic was probably similar in both countries.
The beginning of the epidemic in Brazil coincided with a strong social movement toward democratization, based on a rights approach. The National Health System was established, based on principles of equality, integration, and free universal access to treatment and care.
Beginning in 1996, with strong activism of civil society organizations and support from public health professionals, Brazil was the first developing country to provide universal access to highly active antiretroviral therapy,5 fully funded by the Ministry of Health.
By then, the growing impact of the HIV epidemic and the limited access to treatment in resource-limited settings sparked a global controversy over whether “to treat or not treat” when drugs were already available and being used as a standard of care in wealthy countries. Upon its initiation, Brazil's treatment program met significant skepticism in the form of concerns about long-term sustainability and the risk of drug resistance. In addition, the discourse around prioritizing the prevention of new infections in low-income and middle-income countries was still quite strong. Brazil's decision to provide universal access to treatment was accompanied by a comprehensive prevention strategy that included regular mass media campaigns, promotion and provision of condoms, and interventions focusing on vulnerable groups.
As a result, almost 16 years after beginning to provide universal antiretroviral therapy access, mortality has decreased and survival has increased substantially6; although drug resistance is a concern, different studies have shown that its pattern is very similar to that seen in developed countries. The epidemic has stabilized or decreased in the South and Southeast (the regions that were most affected) but is slowly increasing in northern regions and in specific population groups (eg, young gay men and young girls).
With an increased number of patients in treatment (215,000 as of December 2011) and many already in treatment for many years, financial sustainability led Brazil to invoke the The Agreement on Trade Related Aspects of Intellectual Property Rights (TRIPS) flexibilities to achieve compulsory licensing for efavirenz in 2007. Savings of approximately US $216 million are predicted until 2012, resulting from initial purchase of Indian generics followed by local production.
The lessons from Brazil demonstrate that political will is critical, and while influenced by community activism, it has to lead to adequate budget allocation, which in turn requires the involvement of governmental sectors, health professionals, private sector, and other stakeholders, including parliamentarians. It was this balanced combination that insured that important policy changes could take hold and be continued in a framework of respect for human rights and against all forms of discrimination.
BOTSWANA: PARTNERING FOR RESULTS—TOGETHER WE CAN
In 2001, emboldened by the results of a countrywide feasibility study, President Festus Mogae announced that the government of Botswana would launch a national program to offer free antiretroviral therapy to all qualifying patients. The feasibility study and the subsequent national program—called Masa, the Setswana word for “new dawn”—was born with support from the African Comprehensive HIV/AIDS Partnerships, a public–private partnership of the government of Botswana, the Bill & Melinda Gates Foundation, and Merck and Co, Inc.7
Masa was launched in January 2002 at a clinic established on the grounds of Princess Marina Hospital in Gaborone by the Botswana–Harvard Partnership for HIV Education and Research. Within the first year, Masa had expanded to clinics in Francistown, Maun, and Serowe. Now, just a decade later, the Masa program operates in virtually all large health care clinics throughout Botswana. Today, more than 90% of the nation's eligible adult and pediatric patients receive antiretroviral therapy, with similarly impressive progress in providing access to services for prevention of mother-to-child transmission of HIV and other HIV prevention programs.2
The successful Masa program is a testament to the importance of national leadership and the vital role of public–private partnerships. National leadership in Botswana has consistently prioritized its response to the AIDS epidemic and has actively built partnerships that would supply the best of technical and programmatic inputs. Partnerships such as African Comprehensive HIV/AIDS Partnerships and Botswana–Harvard Partnership continue to play a key role, particularly with training and development of health care workers and bolstering the health care system's overall sustainability.
NIGERIA: STRONG LEADERSHIP, BOLD INITIATIVES, AND SHARED RESPONSIBILITY
As the most populous country in sub-Saharan Africa, Nigeria represents one of the largest burdens of HIV infection worldwide. With 3.3 million people living with HIV, Nigeria has the world's second greatest AIDS burden, after South Africa.2
In April 2001, President Olusegun Obasanjo hosted the first African Heads of State Summit on AIDS and Malaria for the Organization of African Unity. He called on other African nations to commit more resources to the pandemic. At the summit, he stated that Africa was “an endangered continent,” noting that 11.6 million Africans have died of HIV/AIDS over the past 15 years. “The sad reality,” he continued, “is that we are a dying continent, and it will be a challenge to prevent a monumental catastrophe.” In addition to his strong advocacy at the 2001 summit, he announced the initiation of the Nigerian Antiretroviral Therapy program and the purchase of antiretroviral drugs for 10,000 adults and 5000 children, at a cost of 500 million Naira (approximately US $3.7 million) annually. The Nigerian National Antiretroviral Therapy program began in February 2002, with 25 designated treatment centers distributed across the 6 geopolitical zones.7
Nigeria also worked closely with the international community to scale-up their prevention and treatment programs. Collaboration with the President's Emergency Plan for AIDS Relief (PEPFAR) program resulted in a significant scale-up of the treatment to reach more than 50,000 people on treatment by the end of 2005. However, fewer than 10% of the patients in need in the country at the time were receiving treatment.
Nigeria faces the challenge of a large population, more than 158 million, with an HIV prevalence of approximately 3.6%, spread across a huge geographic area,8 necessitating substantial expansion of current services. The benefits of the partnership with the PEPFAR program remain evident, with nearly exponential increases in the number of patients initiated on antiretroviral therapy observed over the past 8 years (ie, between 2004 and 2012).7,9,10 In early 2008, the number of patients on antiretroviral therapy in Nigeria exceeded 269,000 and is currently above 400,000. Still, fewer than 1 in 4 who need treatment receive it.
UGANDA: COMMUNITY MATTERS
Uganda was among the first countries to develop and demonstrate a successful response to AIDS. Its early success in prevention, promoting care for people living with HIV, and reducing stigma11,12 was possible due to exceptional leadership at all levels. HIV prevalence in Uganda has seen significant reduction over the past decade—from approximately 10.5% in 2001 to below 6.5% in 2010.2
In the late 1990s, the recognition that close to 25% of the Ugandan military was infected13 led President Yoweri Museveni to lead from the front. The President and his ministers adopted a number of key policies that proved effective. Uganda invested significantly in building awareness and established a multisectoral response to AIDS. While focusing significant efforts on prevention, it addressed the issues of stigma and discrimination early by engaging communities and incorporated their understanding of the epidemic in Uganda with local cultural beliefs.
Creation of AIDS support organizations, often established and led by people living with or affected by HIV, helped spark the community-level engagement and ownership of the AIDS response in Uganda. The organizations also helped promulgate policies and practices that addressed social stigma and discrimination. For example, in the early days of the response, when many other countries were establishing AIDS wards in hospitals—thereby accentuating the stigma associated with HIV—Uganda mainstreamed treatment within the regular health services. Uganda also set an example by recognizing the importance of education in people living with and affected by HIV and provided large-scale counseling and testing services to help people understand the complexities of their health status and promote prevention messages and actions to their families and communities. Uganda also developed innovative approaches to health care delivery, including home-based care programs, not only to care for the sick but also as an entry point for promotion of HIV prevention measures.
Uganda's success is not only a testimony to the nation's top leadership but also an excellent example of community leadership and how experience and expertise could provide a strong basis for an innovative, effective approach to the care and treatment of HIV/AIDS.
INDIA: SCALING UP PROGRAMS THROUGH COLLABORATION OF GOVERNMENT AND NONGOVERNMENTAL ORGANIZATION
Success in reversing the AIDS epidemic in India, where incidence has reduced by more than 50% over the past 10 years,14 is due to an unique mix of visionary leadership, effective management, technical and programmatic excellence, and, above all, a vibrant civil society movement. In 1986, when the first case of HIV was detected in India, the World Health Organization estimated that by the turn of the century, 1 in 6 Indians would be infected. Nonetheless, early government reaction was denial and stasis. The sentinel sites that were established focused on detecting HIV but provided no services to those testing positive.
Civil society activism drew government attention to the epidemic's predominantly sexual spread into the southern states of Tamil Nadu, Andhra Pradesh, Maharashtra, and Karnataka and into the northeast (fueled by injection drug use). Few services, or none, were available for people living with HIV. High levels of stigma and discrimination meant that most people did not seek treatment. In 1993, in this context, the YR Gaitonde Center for AIDS Research and Education (YRG CARE) in Chennai, India, was established (without government funding) to address the growing need for HIV testing, treatment, and prevention. Being India's first comprehensive HIV/AIDS center, it is responsible today for caring 15,000 AIDS patients15 and continues numerous prevention, research, and education projects, some funded by the National Institutes of Health in the United States, that seek to identify the key issues that will help inform public policy.
In 1992, India established a multistakeholder National AIDS Control Board and launched the first AIDS Control Programme with a World Bank loan. Over the past 2 decades, India has scaled its prevention program via a unique collaboration with communities, nongovernmental organizations, and international partners such as the United States Agency for International Development, Britain's Department for International Development, and the Bill & Melinda Gates Foundation. Through this collaboration, it is estimated that more than 80% of sex workers, 69% of men having sex with men, and 76% of those injecting drugs across the country are covered by intervention programs. HIV prevalence among sex workers has reduced from 10.33% in 2001 to 4.9% in 2009 and that in injecting drug users from 13% to 9% during the same period.14
The National AIDS Control Organization's central stewardship role and a strong civil society movement that consistently challenged and shaped government policies have been critical to addressing the epidemic in India.
Although India's track record on HIV prevention has been highly successful, treatment lags. Recent public–private partnerships have been encouraging but coverage of antiretroviral therapy remains relatively low. YRG CARE has begun collaborating with the government to train government staff and strengthen treatment and care quality.
The course of the epidemic has witnessed stellar examples of leadership in addressing the need for AIDS prevention, treatment, care, and support in resource-limited settings. However, the years ahead will bring new challenges. Although the sharp increase in external financing between 2001 and 2010 (from US $1 billion to US $15 billion annually) kick-started the response, the international community is unlikely to sustain funding at these levels. Nations' current reliance on external financing places their AIDS response at considerable risk.
Country ownership, a leadership commitment to shared responsibility, more domestic financing, and more innovative financing will be required to sustain the gains made over the past 3 decades. We must also sharpen our investments and improve our efficiency and effectiveness.
As the aforementioned examples have illustrated, the engagement of political leadership at the highest levels provides the space for the development of appropriate policies and establishment of the structures and processes that will provide highest impact. Such commitment is essential in a truly multisectoral response that will draw on the strength of all different sectors for maximum effectiveness.
Although government leadership and careful stewardship of resources and capacities are important, they need to be built on the strong participation and engagement of communities and of civil society. Community intelligence and experience is a critical resource in designing and efficiently implementing a sustainable response. Where communities have been engaged and have owned the response, we have seen social transformation and impact beyond HIV.
Although political leadership in many countries has been limited to making statements in public—often in international forums—the actions of countries who have been successful have been clear and demonstrable. In these countries, the leadership is visible and committed to human rights, placing AIDS within the framework of human rights. This leadership puts in place systems for effective governance and management, developing and implementing a participatory and transparent process for creating national policies and strategies. Successful leadership also provides the space for innovation and flexible approaches and is able to harness the collective expertise across sectors—among different ministries, within academia, among scientists, and across the private sector, communities, and civil society—in response to a common vision. Although domestic investment is a sign of ownership, leadership plays a critical role in stewarding resources, regardless of their source, toward fulfilling the national priorities and vision. Sound leadership helps connect discrete parts of the response to draw on their synergies and maximizes return on investments.
The past decade has focused on scaling up the AIDS response. The results have been tremendous. In the coming decade, our focus may need to shift to strengthening national ownership and leadership to sustain the tremendous but fragile progress made in the past.