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A Comprehensive Response: The Role of Nonstate Actors in the Global Plan

Vitillo, Robert J. MSW; Merico, Francesca JD; Levine, Anna S. BS; Buonocore, Taylor BA

JAIDS Journal of Acquired Immune Deficiency Syndromes: May 1st, 2017 - Volume 75 - Issue - p S99–S105
doi: 10.1097/QAI.0000000000001331
Supplement Article

Abstract: Nonstate actors—especially faith-based organizations, other nongovernmental organizations, groups of people living with HIV and AIDS, and private sector organizations—have been deeply committed to supporting governments reach the goals of the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive (Global Plan). This article highlights the role and contributions of select faith-based organizations and some private sector and philanthropic partners, as well as the work of other organizations. The success and impact of the Global Plan was in no small part a result of large-scale country-led collaboration in the provision of health care and implementation of programs. As the world grapples with meeting the ambitious United Nations Joint Programme on AIDS targets to end the AIDS epidemic by 2030—at a time when it also faces many other emerging health crises—the lessons learned from the Global Plan in harnessing the strengths of nonstate partners are the ones that should be replicated, enhanced, and taken to scale.

*Permanent Mission of the Holy See to the UN in Geneva, Geneva, Switzerland;

World Council of Churches, Geneva, Switzerland; and

Born Free Africa, New York, NY.

Correspondence to: Robert J. Vitillo, MSW, Attaché for Health, Permanent Mission of the Holy See to the UN in Geneva, Advisor to the Steering Group for Start Free Stay Free AIDS Free Fast Track, 16 rue de Vermont, CH 1202 Geneva, Switzerland (e-mail: bobvitillo@gmail.com).

Supported by Caritas and Born Free.

The authors have no conflicts of interest to disclose.

The findings and conclusions in this report are those of the authors and do not necessarily represent the official position of the Caritas or Born Free.

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INTRODUCTION

The international community has focused much attention on efforts undertaken by governments and national health structures to eliminate new HIV infections among children and keep their mothers healthy. Less focus has been concentrated on the intense response and attention of nonstate actors, but recent reports have demonstrated that nonstate actors—especially faith-based organizations (FBOs), other nongovernmental organizations (NGOs), groups of people living with HIV and AIDS, and private sector organizations—have been deeply committed to achieving these goals. In this article, we cite examples of some of these diverse organizations and the role they have played in the Global Plan Toward the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive (Global Plan), and we provide recommendations toward new pathways for the fuller integration of similar partners in overall efforts to end AIDS as a global public health threat. We also highlight the role and contributions of select FBOs and private sector and philanthropic partners, as well as the work of other organizations. The list is not exhaustive, and other examples have also been described in more detail in other articles in this supplement.

Table 1 describes some categories and examples of nonstate actors involved directly or indirectly in the implementation of the Global Plan. Some strengthened their own continued efforts while others joined forces to forge a coordinated approach. An example of such an approach is the Pediatric HIV Treatment Initiative, which brought together UNITAID, the Drugs for Neglected Diseases initiative (DNDi), and the Medicines Patent Pool (MPP) to address the shortage of pediatric treatment. This partnership worked with the World Health Organization (WHO) and others to identify and overcome barriers to developing, producing, and availing formulations of antiretroviral medicines for infants and very young children. Pediatric HIV Treatment Initiative focused on pooled intellectual property, timely research and development, and market shaping.

TABLE 1

TABLE 1

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HARNESSING THE COMMITMENT OF FBOs

WHO reports that 30%–70% of health care in some low-income countries are operated by FBOs; worldwide, FBOs serve a significant percentage of people living with HIV.1 The report Ending AIDS as a Public Health Threat—published in 2016 by Caritas Internationalis and the Catholic HIV and AIDS Network, in close collaboration with the United Nations Joint Programme on AIDS (UNAIDS)—offers compelling evidence that in many parts of the world, FBOs have contributed significantly to the HIV response.2

The Global Plan provided a strategic impetus as well as strong inspiration and encouragement to a range of organizations and stakeholders to get more involved. Notably, FBOs already engaged in the prevention of mother-to-child transmission (PMTCT) of HIV, and the early diagnosis and treatment of mothers and children living with the virus worked to scale up and expand their programs. Key religious leaders leveraged their moral and ethical authority to encourage HIV testing among adults of all ages, but particularly in those of the childbearing age. In September 2015, the International Network of Religious Leaders Living With or Personally Affected by HIV and AIDS (INERELA+) declared that “we will hold ourselves, our governments, and development partners accountable to invest in expanded access to HIV testing and (antiretroviral therapy [ART]) for all in need. We will mobilize our religious communities to take up voluntary HIV testing and help people stay on treatment”.3

In 2013, with the aim of aligning FBO activities more effectively with strategies and targets of the Global Plan, the African Christian Health Associations Platform, Caritas Internationalis, and the Ecumenical Advocacy Alliance collaborated with UNAIDS to convene a consultation in Lusaka, Zambia. In addition to FBOs, representatives of national governments, networks of women living with HIV, and multilateral organizations were active participants. Participants in the consultation strove to identify the complementarity of each stakeholder in an effort to achieve the goals of the Global Plan. Local FBOs were seen as essential because they often are closest to those in need of information, support, and services. In her remarks to the participants, Dr. Karen Sichinga, Executive Director of the Churches Health Association of Zambia (CHAZ), noted that.

It is only by strengthening our partnerships that we are going to be able to develop holistic and effective ways to overcome the challenges set before us. As FBOs, we have been here all along, but why has it taken so long for the international community to recognize our contribution to health service delivery and engage us.4

The harnessing of FBOs to further the Global Plan goals evolved organically based on the fact that FBOs already had national networks that provided HIV care, including HIV counseling and testing, PMTCT, and ART in a number of countries and regions. In addition, they frequently had strong ties with national state structures: for example, Caritas Rwanda had strong ties with the government Ministry of Health, was an active member of the Rwanda Interfaith Council and the Country Coordinating Mechanism for the Global Fund, and chaired the Rwanda NGO Forum on AIDS and Health Promotion. This organization has played a key role in Rwanda's effective PMTCT and early infant diagnosis programs.5

Other projects, such as the Disease Relief through Excellent and Advanced Means (DREAM) Project6 (Table 2), already existed throughout a number of countries and provided a holistic approach to HIV care and treatment. Many of these programs took a holistic approach to comprehensive services, with mentorship and involvement of nonhealth personnel—including peer-to-peer education, community care support, and defaulter tracing—and networks of clinical laboratories for HIV diagnosis and monitoring of treatment.

TABLE 2-a

TABLE 2-a

TABLE 2-b

TABLE 2-b

In some cases, the unique focus of FBOs allowed innovation that was culturally sensitive. The CHAZ Training for Traditional Marriage Counselors encouraged indigenous institutions to provide culturally sensitive sexual and relationship education to men and women during courtship and before marriage. In addition, organizations such as CHAZ integrated stigma reduction components into programming for maternal, newborn, and child health (MNCH) and PMTCT. Other organizations, such as Cabrini Ministries, initiated adherence support programs to children and families.

While many efforts were considered models of care or best practice, some of these programs were able to scale up and contribute remarkably to the overall Global Plan impact. Excellent examples of this are the programs implemented by Catholic Relief Services. Working in partnership with other FBOs and NGOs over the years, Catholic Relief Service's exceptional record was possible, in large part, through its coordination of AIDSRelief, a consortium of US-based organizations funded by the United States President's Emergency Plan for AIDSRelief (PEPFAR). Other organizations in the consortium included the University of Maryland School of Medicine, the Catholic Medical Mission Bureau, Palladium (formerly Futures Group), and IMA World Health. These partners enrolled more than 400,000 people on ART, trained 30,000 staff during a 9-year period, and pioneered a strategy of early treatment offered through 276 local health facilities in Ethiopia, Guyana, Haiti, Kenya, Nigeria, Rwanda, South Africa, Uganda, and the United Republic of Tanzania.7

It has been impressive to see how this network was urgently and effectively harnessed during the early urgent days of HIV treatment and PMTCT in countries supported by PEPFAR. AIDSRelief country programs facilitated diagnosis, care, and treatment services for children and adolescents, actions that resulted in the program's high overall pediatric enrollment of 8.3% and extremely low pediatric mortality of 2.7%. To improve care for HIV-positive infants, AIDSRelief developed a comprehensive dosage schedule for pediatric antiretroviral medicines and initiated treatment of all HIV-positive infants, regardless of CD4 count or clinical staging.8,9 As grant administration and management of the AIDSRelief program were handed back to local providers, Catholic Relief Service efficiently helped build capacity for the transition.

FBOs also have leveraged convening powers at the country and global levels. In 2016, Caritas Internationalis, PEPFAR, UNAIDS, and the Vatican's Bambino Gesù Hospital convened a consultation with key religious stakeholders engaged in services to children and family members living with or affected by HIV. These organizations, which are based around the world and reach out to the poorest and most marginalized people, spoke of positive collaboration with governments. They reported on innovative methods to stimulate demand for HIV testing and counseling, facilitate faster turnaround for delivery of HIV test results, strengthen community-based treatment models, and work with religious and indigenous leaders to include information about HIV in their marriage and relationship preparation courses and formation programs. Above all, they identified the need to continue strong advocacy to eliminate stigma and discrimination toward people living with HIV, particularly among children.

At the conclusion of the 2016 consultation, participants committed themselves and their respective organizations to a number of actions, including the following:

  • increased partnership and collaboration with government and other civil society actors;
  • the assumption of a critical role in implementing and monitoring progress in achieving the Sustainable Development Goals and other international commitments, and in safeguarding respect for human rights;
  • assured access to treatment and provision of social, emotional, and spiritual support for arriving migrants and refugees;
  • maintained focus on and concern for marginalized, low-prevalence, and hard-to-reach populations in all regions; and
  • contribution to ethical and theological reflection and to ecumenical and interreligious dialog on overcoming obstacles and barriers to effective early infant diagnosis and treatment of children living with HIV.

As another example of convening different partners, Caritas Internationalis, PEPFAR, UNAIDS, and the Vatican's Pontifical Council for Justice and Peace convened a special private meeting for an open dialog with chief executive officers of pharmaceutical and diagnostics manufacturers in April 2016. The purpose of the consultation was to discuss obstacles to early diagnosis and treatment, especially of children living with HIV. Identified needs included the following:

  • developing and producing more child-friendly medicines and diagnostic tools;
  • promoting additional research and development;
  • simplifying some processes of approval of new medicines and diagnostic tools;
  • engaging FBOs in research on new medicines and diagnostic tools;
  • changing pricing structures, especially for second- and third-line medicines, for markets in middle-income countries, and among poor and marginalized populations in high-income countries; and
  • strengthening health and community systems to ensure more timely delivery of test results and initiation and retention in treatment.
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PARTNERSHIPS WITH THE CORPORATE SECTOR AND PHILANTHROPY

Corporate organizations have also played key roles in the Global Plan, both in their private capacity and through their long-standing strategic partnerships in many regions and countries. Johnson & Johnson's commitment to the elimination of mother-to-child HIV transmission reflects a vision that the company has long supported: a world where all women, children, and their families live long, healthy, and productive lives. This commitment is exemplified by enduring partnerships to champion people at the front lines of delivering care. Johnson & Johnson has worked in partnership with the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) for more than 25 years, and also with mothers2mothers, an international NGO implementing a mentor mother model that has spread throughout Sub-Saharan Africa for the past 10 years. Johnson & Johnson partnerships with Born Free and University of Cape Town Spark Health further strengthened human capacity at the state and local levels, with a focus on data to improve PMTCT delivery. Finally, emerging trends–guided new focus areas of programming Johnson & Johnson has supported in DREAM and MomConnect, a South African National Department of Health initiative that is using technology to transform the way health care is delivered.

ViiV Healthcare has historically been committed to maternal and child health. Some of their initiatives have included a partnership with Clinton Health Access Initiative and Mylan Laboratories to improve access to better antiretroviral formulations for children, support for unrestricted grants to improve research in PMTCT and pediatric HIV, and partnerships with EGPAF and amfAR (Treat ASIA)—all of which have increased the reach and impact of the Global Plan. ViiV has also played an innovative and critical role by investing in community-based responses through small grants made through the Positive Action for Children Fund.

In South Africa, MAC AIDS Fund (M A F) invested in the United Nations Children's Fund (UNICEF) and MomConnect to improve access to PMTCT services. In India, M A F support has helped train health workers to ensure that HIV-positive women and infants receive the care they need. In Kenya and Nigeria, M A F has linked forces with Johnson & Johnson and Born Free Africa to demonstrate the power of coordinated partnerships to strengthen the delivery of PMTCT services at both the local and state levels.

Unique models of innovative partnerships have been driven by Born Free Africa, a philanthropic initiative also committed to eradicating perinatal HIV infection. This initiative began as the Business Leadership Council for a Generation Born HIV Free, a coalition of business executives who combined their resources to contribute to eliminating mother-to-child HIV transmission as part of the Global Plan. Born Free has brought business instincts, new networks of stakeholders, and catalytic financial resources to the table while building coalitions of unlikely partners.

Born Free's primary investments were in partnerships with Sub-Saharan African ministries of health. These multiyear partnerships focused on recruiting, embedding, and coaching “SWAT” teams of top local talent directly into the most critical government roles for achieving the elimination of mother-to-child HIV transmission. These teams became part and parcel of the respective ministries of health and brought a combination of strong management and a result-driven mindset. The teams worked behind the scenes with existing government employees at the federal, state/county, and local levels to identify bottlenecks, jump-start slow systems, and empower the existing structures to work more efficiently.

Two flagship investments of this model are in Kenya and Nigeria (Table 2). Born Free also led multiple advocacy campaigns to ensure the US government's ongoing role in supporting HIV and AIDS programs abroad. These included a fashion campaign that harnessed the creative energies of 22 leading fashion designers, resulting in a collection sold on Amazon's Shopbop.com. Believing in the power of seeing and learning about things firsthand, Born Free has also hosted and supported congressional delegations to countries to see programs and discuss key issues around what is being achieved on the ground.

In 2012, Born Free contributed to policy dialog and change, including through a timely collaboration with UNICEF and Clinton Health Access Initiative to model the potential cost impact of a global policy shift to Option B+. A report produced through this effort, A Business Case for Options B and B+ to Eliminate Mother to Child Transmission of HIV by 2015, provided a foundation for an accelerated discussion on the merits of the proposed shift and contributed to the rapid adoption of Options B and B+ across Sub-Saharan Africa.12

In every country where the Global Plan and efforts to end vertical transmission of HIV were underway, the role of implementing organizations, community organizations, foundations, funders, and other partners was critical in performing national plans. From the provision of direct services, technical expertise, engaging communities at the local level, and more, the contributions of nonstate actors complemented the work of government-sponsored health services in diverse ways.

In many countries, the work of implementing organizations (such as EGPAF and International Center for AIDS Care and Treatment Programs [ICAP]) was performed within the context of the PEPFAR program with its formal relationship to national plans. Faith-based providers often played a unique role as a primary provider of health care in rural areas not served by government facilities, and the nature of their partnerships with national programs varied by country, with generally good collaboration. Private sector organizations and foundations partnered to support the work of the Global Plan in many ways, including (but not limited to) bringing business talent and innovations to planning and delivery of services, funding small community organizations working on local solutions, enlisting social media and communications for advocacy, and supporting government programs with technical expertise in laboratory systems and reduced pricing of commodities.

Partnership and communication with the public health sector occurred at the district, state/province, and national levels. Major funders (such as the Global Fund to Fight AIDS, Tuberculosis and Malaria) worked directly with national entities and were aligned with the country's national strategic plan for HIV and AIDS. Technical agencies, such as UNAIDS and WHO, bridged provision of technical assistance on strategic information and normative guidelines to government partners; they also promoted full engagement of communities and people living with HIV, better informing planning and delivery of care. Critical resources and skills were provided by nonstate organizations, but these realized their greatest benefit when there was collaboration and communication with those responsible for achieving the goals of the Global Plan in each country (Box 1).

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Attributes of Nonstate Sector Players Cited Here...

  • Provision of cohesion and collaboration
  • Bridge between stakeholders
  • Provision of services in underserved areas
  • Link to innovation and new talent
  • Funding small organizations solving local problems
  • Communication and advocacy at all levels
  • Provision of respectful communication
  • Meaningful engagement
  • Evaluation and costing of innovative models
  • Planning to ensure coverage, especially of underserved areas
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CONCLUSIONS

No single sector of society achieved the success of the Global Plan to reduce vertical transmission and pediatric HIV infection: joint engagement and action from state and nonstate players, under the leadership of governments, all contributed. Pope Francis articulated this challenge on 2 separate occasions in May 2016:

Health, indeed, is not a consumer good, but a universal right, which means that access to health care services cannot be a privilege. Health care, even basic treatment, is in fact denied—denied!—in various parts of the world and in many regions of Africa. It is not regarded as a universal right, but rather still a privilege for the few, those who can afford it. Accessibility to health care services, treatment, and medicine is still a mirage.10

What is needed is a sincere and open dialog, with responsible cooperation on the part of all: political authorities, the scientific community, the business world, and civil society. Positive examples are not lacking; they demonstrate that a genuine cooperation between politics, science, and business can achieve significant results.11

The success and impact of the Global Plan was in no small part a result of this collaborative way of providing health care and implementing programs. As the world grapples with meeting the ambitious UNAIDS targets to end the AIDS epidemic by 2030—at a time that it also faces many other emerging health crises—the lessons learned through the Global Plan in harnessing the strengths of nonstate partners are the ones that should be replicated, enhanced, and taken to scale.

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REFERENCES

1. African Religious Health Assets Program (ARHAP). Appreciating Assets: The Contribution of Religion to Universal Access in Africa. Mapping, Understanding, Translating, and Engaging Religious Health Assets in Zambia and Lesotho. Cape Town, South Africa: ARHAP; 2006. Available at: https://http://www.lausanne.org/wp-content/uploads/2008/06/ARHAPWHO_execsumm.pdf. Accessed January 30, 2017.
2. Caritas Internationalis. Ending AIDS as a Public Health Threat: Faith-based Organizations (FBOs) as Key Stakeholders. Geneva, Switzerland: Caritas Internationalis; 2016. Available at: http://jliflc.com/wp-content/uploads/2015/12/Report-Caritas-Research-on-FBO-and-the-HIV-response-revised-RJV-WITHOUT-track-changes-20oct2015.pdf. Accessed (cannot locate access date).
3. International Network of Religious Leaders Living With or Personally Affected by HIV and AIDS (INERELA+). A Call to Action by Religious Leaders and Champions in Support of the Fast Track Agenda Towards Ending the AIDS Epidemic in Eastern and Southern Africa [Press Release]. September 15, 2015. Available at: http://inerela.org/2015/09/a-call-to-action-by-religious-leaders-and-champions-in-support-of-the-fast-track-agenda-towards-ending-the-aids-epidemic-in-eastern-and-southern-africa/. Accessed January 30, 2017.
4. Africa Christian Health Associations Platform (ACHAP), Caritas Internationalis, Ecumenical Advocacy Alliance, Churches Health Association of Zambia (CHAZ). Scaling-Up the Engagement of Faith-based Organizations in the Implementation of the Global Plan Towards the Elimination of New HIV Infections Among Children by 2015 and Keeping Their Mothers Alive and Scaling-Up Access to Anti-retroviral Treatment for HIV Infection. Lusaka, Zambia: ACHAP, Caritas Internationalis, Ecumenical Advocacy Alliance and CHAZ; 2013. Available at: https://http://www.google.ch/url?sa=t&rct=j&q=&esrc=s&source=web&cd=4&cad=rja&uact=8&ved=0ahUKEwiZuMPc_4LQAhVJsBQKHbs7AesQFggxMAM&url=http%3A%2F%2Fhttp://www.e-alliance.ch%2Ftypo3conf%2Fext%2Fnaw_securedl%2Fsecured09b.pdf%3Fu%3D0%26file%3Dfileadmin%2Fuser_upload%2Fdocs%2FBulletins%2F2013%2FConsultation_on_the_Global_Plan_Report_FINAL_with_logos.pdf%26t%3D1433915545%26hash%3Da154790162bd93f11a28f9271043fdf9&usg=AFQjCNHJk9lm8tJI4OR6cyuf9V_kyoatIg&sig2=Tu_-_a-vQXP9ce9r95QjOQ&bvm=bv.136811127,d.d24. Accessed October 31, 2016.
5. Kanani PB. Early diagnosis and treatment for children living with HIV: strengthening engagement of faith-based organizations. Paper presented at: Consultation on Early Diagnosis and Treatment of Children Living with HIV; April 11–13, 2016; Rome, Italy.
6. Gondwe J. Achievements and challenges: DREAM experience. Paper presented at: Consultation on Early Diagnosis and Treatment of Children Living with HIV; April 11–13, 2016; Rome, Italy.
7. Menda D. Early diagnosis and treatment for CLWHIV: CHAZ experience. Paper presented at: Consultation on Early Diagnosis and Treatment of Children Living with HIV; April 11–13, 2016; Rome, Italy.
8. Jere E, Kazadi JC. Closing pediatric HIV care and testing gaps: catholic relief services field experience. Paper presented at: Consultation on Early Diagnosis and Treatment of Children Living with HIV; April 11–13, 2016; Rome, Italy.
9. Catholic Relief Services (CRS). AIDSRelief Final Report: Providing Treatment, Restoring Hope. Baltimore, MD: CRS; 2014. Available at: http://http://www.crs.org/our-work-overseas/research-publications/aidsrelief-final-report. Accessed January 29, 2017.
10. Pope Francis. Address of his holiness pope francis to doctors with Africa—CUAMM (college for aspiring and missionary doctors). Presented at: May 7, 2016; Vatican City. Available at: http://w2.vatican.va/content/francesco/en/speeches/2016/may/documents/papa-francesco_20160507_medici-africa-cuamm.html. Accessed January 29, 2017.
11. Pope Francis. Address of his holiness Pope Francis at the United Nations office in Nairobi, Kenya. Presented at: November 26, 2015; Nairobi, Kenya. Available at: http://w2.vatican.va/content/francesco/en/speeches/2015/november/documents/papa-francesco_20151126_kenya-unon.html. Accessed January 29, 2017.
12. Business Leadership Council (BLC), United Nations Children's Fund (UNICEF), Clinton Health Access Initiative (CHAI). A Business Case for Options B and B+ to Eliminate Mother to Child Transmission of HIV by 2015. BLC, UNICEF, CHAI; 2012. Available at: https://http://www.unicef.org/aids/files/DISCUSSION_PAPER.A_BUSINESS_CASE_FOR_OPTIONS_B.pdf. Accessed June 20, 2016. Revised July 2012.
Keywords:

nonstate actors; PMTCT; corporate sector; faith-based organizations; pediatric HIV; philanthropy

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