South Africa Project Heart Report by EGPAF

PROJECT HEART END-OF-PROJECT REPORT

SOUTH AFRICA EIGHT YEARS OF SCALING UP HIV PREVENTION, CARE, AND TREATMENT SERVICES AND SAVING LIVES

PROJECT HEART END-OF-PROJECT REPORT: SOUTH AFRICA BUILDING CAPACITY, CREATING HOPE EIGHT YEARS OF SCALING UP HIV PREVENTION, CARE, AND TREATMENT SERVICES AND SAVING LIVES CDC FUNDING PERIOD: FEBRUARY 2004–FEBRUARY 2012 CDC COOPERATIVE AGREEMENT U62/CCU123541 FUNDED BY: President’s Emergency Plan for AIDS Research (PEPFAR) U.S. Centers for Disease Control and Prevention (CDC) IMPLEMENTED BY: Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) ACKNOWLEDGMENTS: EGPAF would like to thank the President’s Emergency Plan for AIDS Relief, the U.S. Centers for Disease Control and Prevention (CDC), and the South Africa Department of Health for making Project HEART/South Africa possible. This program was supported by CDC Cooperative Agreement CCU123541. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC. AUTHOR: Heather Mason, Communications Consultant WITH DIRECTION FROM: Rayna Taback, Sustainability and Transition Technical Advisor Andrea Uehling, Senior Technical Officer Stephen Lee, Senior Program Director, EGPAF WITH PRODUCTION AND DESIGN SUPPORT FROM: Katherine Warminsky, Graphic Designer, EGPAF ADDRESS: 1140 Connecticut Ave. NW, Suite 200 Washington, DC 20036 Phone: 202-296-9165 www.pedaids.org DISCLAIMER: This publication was supported by Grant/Cooperative Agreement Number U62/CCU123541 from the CDC under PEPFAR. Its contents are solely the responsibility of the authors and do not necessarily represent the official views of the CDC, PEPFAR, or the U.S. government. Note to the Reader: Project HEART was implemented from February 23, 2004–February 22, 2011 and was divided into eight project years. Each project year began on February 23 and ended on February 22 of the following year. The following report describes activities and data based on the project years. For this reason, activities and data in this document are reported on a February-to-February calendar rather than a January-to-December calendar.

2 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

TABLE OF CONTENTS

ACKNOWLEDGMENTS............................................................................................................ ii LIST OF ABBREVIATIONS AND ACRONYMS...................................................................4 EXECUTIVE SUMMARY............................................................................................................5 PROJECT ACHIEVEMENTS..................................................................................................11 LESSONS LEARNED................................................................................................................21 SOUTH AFRICA STORY OF HOPE: TINY NDLOVU......................................................22 FUTURE DIRECTIONS.............................................................................................................24 REFERENCES.............................................................................................................................24

ALL PHOTOS JON HRUSA

PROJECT HEART: SOUTH AFRICA

2 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 3

PROJECT HEART: SOUTH AFRICA

LIST OF ABBREVIATIONS AND ACRONYMS AIDS

Acquired Immune Deficiency Syndrome

NIMART

ANC

Antenatal Clinic

NVP Nevirapine

ART

Antiretroviral Therapy

PCR

Polymerase Chain Reaction

ARV Antiretroviral

PEPFAR

Presidentâ&#x20AC;&#x2122;s Emergency Plan for AIDS Relief

AZT Zidovudine

PMTCT

Prevention of Mother-to-Child Transmission

CBO

Community-Based Organization

Project Year

CCMT

Comprehensive (HIV) Care, Management, Treatment, (and Support)

Quality Improvement

CDC

U.S. Centers for Disease Control and Prevention

RTHC

Road to Health Card

SAG

South African Government

DHMT

District Health Management Team

DOH

(South Africa) Department of Health

EGPAF

Elizabeth Glaser Pediatric AIDS Foundation

HEART

Helping Expand Antiretroviral Treatment (to Children and Families)

HIV

Human Immunodeficiency Virus

HMIS

Health Management Information System

I ACT

Integrated Access to Care and Treatment

KZN

KwaZulu Natal

M&E

Monitoring and Evaluation

MTCT

Mother-to-Child Transmission

4 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

Nurse-Initiated and -Managed ART

TB Tuberculosis UNAIDS

Joint United Nations Program on HIV/AIDS

USAID

U.S. Agency for International Development

EXECUTIVE SUMMARY Project HEART (Help Expand Antiretroviral Therapy) was part of an eight-year, multicountry initiative to extend lifesaving treatment to millions of people living with HIV and was supported by the President’s Emergency Plan for AIDS Relief (PEPFAR) and the U.S. Centers for Disease Control and Prevention. Project HEART—launched by the U.S. government and the Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) in South Africa, Côte d’Ivoire, Tanzania, and Zambia in 2004 and in Mozambique in 2006—was part of the PEPFAR Track 1.0 treatment initiative to rapidly scale up antiretroviral therapy (ART) through existing organizations implementing prevention of mother-to-child transmission (PMTCT) programs. Through Project HEART, more than 1 million men, women, and children received HIV care and support, more than 2.5 million pregnant women received HIV counseling and testing, and more than half a million people started ART. In 2010, 1 out of every 10 PEPFAR-supported ART patients in sub-Saharan Africa received treatment through Project HEART. Project HEART’s global goals included the following: • Support service delivery of HIV prevention, care, and treatment services; • Build the clinical, managerial, financial, and administrative capacity of local health providers and partners to more effectively provide HIV services; • Strengthen data quality by improving data collection processes and systems; • Improve the technological and physical infrastructure of health facilities; and • Build capacity and decentralize responsibility by providing sub-awards, mentorship, and training to local partners and the ministries of health at the district and provincial or regional levels.

Aligned with PEPFAR’s long-term strategy to strengthen the capacity and ownership of host-country governments and local partners to lead their countries’ HIV/AIDS programs, Project HEART focused on strengthening existing systems with approaches tailored to each country’s individual needs. Starting in 2009, sustainably transitioning care and treatment activities to local partners by February 2012 became a core mandate and goal of Project HEART. Project HEART’s impact in South Africa has been substantial. As of September 30, 2011, EGPAF had helped enroll more than 215,000 people into HIV care in South Africa; 140,000 of those were started on ART, including more than 14,000 children under the age of 15. More than 515,000 women in South Africa had received PMTCT services under EGPAF support. In addition, more than 450 health-care professionals supported by EGPAF were seconded to the South Africa Department of Health (DOH) to strengthen human resource capacity. EGPAF’s work under Project HEART/South Africa was about more than data; it was about making a difference and positively impacting human lives in the health facilities and communities most affected by HIV/AIDS. EGPAF provided extensive training and career development for South African health staff through such initiatives as nurse-initiated and -managed ART, which expands ART coverage by training nurses and midwives to administer ART to patients. Among other initiatives, EGPAF hired, trained, and successfully transitioned hundreds of healthcare staff to the DOH and local organizations. EGPAF also worked closely with communities: organizing community health forums to address HIV/AIDS issues; founding support groups for people living with HIV, children affected by HIV, and HIV caregivers; and providing grants to community-based organizations. These efforts helped ensure that South Africa’s HIV/AIDS programs are sustainable and will continue to progress toward the ultimate goal: an HIV/AIDS-free generation in South Africa.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 5

PROJECT HEART: SOUTH AFRICA

BACKGROUND: SOUTH AFRICA AND THE AIDS PANDEMIC Although South Africa is an upper-middle-income country, it faces many health and social challenges characteristic of a developing country. HIV/AIDS is one of the most acute health challenges facing South Africa today. South Africa, with a population of just over 49 million people1, represents 0.7 percent of the global population but carries 17.0 percent of the global burden of HIV/ AIDS.2 In 2010, HIV prevalence among adults aged 15–49 in South Africa was estimated at 17.9 percent. Approximately 5.57 million people in South Africa were infected with HIV in 2010, including 518,000 children under 15 years and 2.95 million adult females aged 15 years or older.3 In 2009, an estimated 500,000 people were newly infected with HIV in South Africa, and nearly 400,000 people died of AIDS-related illnesses.4 In 2010, 30.2 percent of pregnant women attending antenatal clinics in South Africa were infected with HIV, up from 29.4 percent in 2009. The highest antenatal HIV seroprevalence is in KwaZulu-Natal (KZN), where antenatal seroprevalence is 39.5 percent; it is followed by Mpumalanga Province, at 35.1 percent, and four provinces (Free State, Gauteng, Eastern Cape, and North West) that have antenatal seroprevalence at or near 30 percent. HIV prevalence among antenatal women aged 15–24 stands at 21.8 percent and has changed very little over the past five years.

6 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

“The HIV epidemic in South Africa has a profound impact on society, the economy, as well as the health sector. It contributes to a decline in life expectancy, increased infant and child mortality and maternal deaths as well as a negative impact on socio-economic development.” The National Antenatal Sentinel HIV and Syphilis Prevalence Survey, South Africa, 2010, National Department of Health

The lack of reduction in HIV prevalence within this demographic group is worrying; the United Nations Millennium Development Goals seek to reduce prevalence in this age group by 75 percent between 2001 and 2015.5 Prevention of mother-to-child transmission (PMTCT) of HIV is one of the most effective strategies for controlling the spread of the virus, as women of childbearing age in South Africa are extremely vulnerable to HIV. South Africa’s PMTCT program was initiated in 2004, with EGPAF support. In 2010, the program was revised to mandate that pregnant women with HIV begin a full course of antiretroviral (ARV) prophylaxis at 14 weeks’ gestation to help prevent transmission of HIV to their babies.

South Africa has made great strides in scaling up PMTCT services in recent years. In 2004, only 32,541 pregnant women received ARV treatment to prevent new infection in their babies, compared with 250,072 women in 2010. South Africa has achieved more than 95 percent coverage for pregnant women living with HIV in need of antiretroviral treatment (ART), surpassing the target set by the United Nations General Assembly Special Session.6 In addition, a June 2011 study by South African and U.S. Centers for Disease Control and Prevention researchers showed that the mother-to-child transmission (MTCT) rate for babies born exposed to HIV is just 3.5 percent, suggesting that elimination of MTCT by 2015 is possible.7

Access to HIV care, support, and treatment is variable among provinces in South Africa. Nationwide, the Joint United Nations Program on HIV/AIDS (UNAIDS) estimates that 42 percent of people eligible for ART for HIV in South Africa are receiving it. Although South Africa has a long way to go to achieve universal ART coverage, the country has made great progress since the 2005 roll-out of ART to all South Africans who need it. In 2004, only 55,000 HIV-positive people in South Africa were receiving ART; in 2010, that number reached 1,389,865.10 EGPAF, PROJECT HEART, AND THE SOUTH AFRICA DEPARTMENT OF HEALTH THE ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION

Coinfection of HIV and tuberculosis (TB) is another massive health challenge in South Africa, which has a TB burden ranked third in the world. Approximately 407,000 cases of TB were diagnosed in 2009, with KZN Province accounting for more than one-fourth of TB cases. Fewer than 7,500 multidrug-resistant TB cases are seen each year in South Africa8, and TB is the number one cause of death among South Africans infected with HIV.9 The South Africa Department of Health is working to integrate HIV, AIDS, and TB services into the country’s primary health-care system.

The Elizabeth Glaser Pediatric AIDS Foundation (EGPAF) is a global leader in the fight against pediatric HIV and AIDS. As of June 30, 2011, it had provided more than 12.8 million women with services to prevent transmission of HIV to their babies and had enrolled nearly 1.4 million individuals, including 110,000 children, into HIV care and support programs. EGPAF currently works at more than 5,600 sites in 16 countries to implement prevention, care, and treatment services; to further advance innovative research; and to execute strategic and targeted global advocacy activities in order to bring dramatic change to the lives of millions of women, children, and families worldwide.

FIGURE 1. EGPAF SOUTH AFRICA SUPPORTED DISTRICTS ZIMBABWE

MOZ AMB IQ U E

LIMPOPO Waterberg

BOTSWANA

Bojanala Platinum NORTH-WEST

MPUMALANGA GAUTENG SWAZILAND

NAMIBIA

FREE STATE NORTHERN CAPE

Thabo Mofutsanyane

Motheo Xhariep

Zululand

KWAZULU-NATAL Uthukela

LESOTHO

Umgungundlovu

EASTERN CAPE

South Atlantic Ocean

Indian Ocean WESTERN CAPE

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 7

PROJECT HEART: SOUTH AFRICA

PROJECT HEART Project HEART, which stands for Help Expand Antiretroviral Therapy (for Children and Families), operated under a cooperative agreement for HIV/AIDS care and treatment awarded to EGPAF by the U.S. Centers for Disease Control and Prevention (CDC) on February 23, 2004, as part of the President’s Emergency Plan for AIDS Relief (PEPFAR). EGPAF provided global leadership and management for Project HEART to scale up quality HIV prevention, care, and treatment services and to transition the provision of these services to local partners or governments in five countries: Côte d’Ivoire, Mozambique, South Africa, Tanzania, and Zambia. EGPAF implemented Project HEART in close cooperation with the U.S. government and host-country governments, supporting ministries of health to scale up HIV services and integrate them into national health-care systems. Activities were aligned with global guidelines and national treatment plans and services. PROJECT HEART/SOUTH AFRICA AND THE SOUTH AFRICA DEPARTMENT OF HEALTH EGPAF provided support to the South African government’s (SAG’s) comprehensive HIV and AIDS care, management, treatment, and support program and its PMTCT (prevention of mother-to-child transmission) Program from 2004 to 2012. EGPAF worked closely with the South Africa Department of Health (DOH) to support the implementation of the HIV and AIDS Strategic Plan 2007–2011, to address gaps and needs identified by the DOH, and to strengthen the continuum of care between PMTCT and HIV care and treatment services. Over the past eight years, through Project HEART/South Africa, EGPAF supported the DOH in implementing HIV care and treatment services, using an integrated approach based on improving quality of services through didactic and on-thejob training and mentoring; capacity building; infrastructure improvements; family-centered approaches to comprehensive care; community education, sensitization, and mobilization; support for the development of guidelines; and creation of an enabling policy environment at the national level. These activities supported the SAG’s National Strategic Plan objectives of scaling up coverage of the comprehensive care and treatment package and increasing the retention of adults on antiretroviral therapy.11

8 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

ABOUT THE ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION Elizabeth Glaser acquired HIV through a blood transfusion and unknowingly passed the virus on to her daughter, Ariel, and her son, Jake. Following Ariel’s death in 1988, Elizabeth joined with close friends Susie Zeegen and Susan DeLaurentis to create a foundation with one mission: to bring hope to children with AIDS. Elizabeth lost her own battle with AIDS in 1994, but thanks to the work of the Elizabeth Glaser Pediatric AIDS Foundation, Jake is now a healthy young adult, and hundreds of thousands of other children have a chance to lead longer, more vibrant lives.

In February 2011, PEPFAR/South Africa, in consultation with the DOH, announced a PEPFAR partner realignment designed to reduce duplication of activities and ensure enhanced coordination of PEPFAR support. In this realignment, one partner was assigned to each district to provide support for planning and scale-up of HIV services, as well as to help coordinate PEPFAR activities in the assigned district. The realignment included both CDC and U.S. Agency for International Development (USAID) partners, and EGPAF was identified as the district support partner in 9 of 16 CDC priority districts and sub districts (seven districts and two sub districts). TRANSITION From the outset in 2004, Project HEART South Africa’s approach to providing HIV care and treatment emphasized strengthening the capacity and ownership of host country governments and local implementing partners, and promoting local leadership in the provision of HIV services. Rather than creating parallel systems for HIV service delivery, the Project HEART programs worked closely with the DOH to identify sustainable approaches to scaleup based on the existing health system, local epidemiology, and socio-cultural contexts. Reauthorized under new 2008 legislation, and building on previous successes, the second phase of PEPFAR focused on transitioning from an emergency response to promoting sustainable, countryowned and -led programs. The three-year continuation of the four Track 1.0 ART awards through February 2012 required that Track 1.0 ART partners transition management of the programs to local partners by February 28, 2012, while ensuring the uninterrupted provision, and in some cases expansion, of quality HIV care and treatment programs and services.

EGPAF deliberated at length with the CDC and national partners to determine the best approach for transition. EGPAF’s original transition strategy in South Africa was to transfer care and treatment program support directly to the DOH by the end of Project HEART. Over time, it appeared that not all program responsibilities could be directly transferred to the DOH. At a late date, despite a strong civil society with many community service organizations and a desire to assure continuity of HIV services established under Project HEART, EGPAF decided to convert the Project HEART infrastructure, personnel, management systems, and assets existing in South Africa into a viable, independent local organization. The Ariel Glaser Pediatric AIDS Foundation, South Africa (AGPAFSA) was registered, governance structures developed, and AGPAFSA applied competitively for funding to provide continued support for community services in the following districts: • Free State province: Motheo and Xhariep districts; • KZN province: uMgungundlovu, Zululand and uThukela districts;

TRANSITION HIGHLIGHTS: South Africa • McCord Hospital, as of July 2010, is receiving direct CDC funding. • In 2011, EGPAF established AGPAFSA, completed incountry registration, appointed a board of directors, and finalized its EGPAF sub-award. • As of the end of 2011, all of the professionals seconded to the DOH by EGPAF have been absorbed into the national health system, either directly through DOH structures or through contracts with AURUM. • At care and treatment sites previously supported by The AIDS Healthcare Foundation (AHF), a U.S.based international NGO, AHF is working to develop memorandums of understanding with provincial departments of health to ensure a smooth transition to provincial and district support. • District–level support is being transitioned to HST. • Human resources management is being transitioned to AURUM, a local South African NGO.

• Limpopo province: Waterberg district; and • North West province: Bojanala district, also R. Moiloa and Tswaing sub-districts in Ngaka Modiri Molema district in North West province The selection of partners to continue Project HEART responsibilities was made by CDC through competitive procurements. CDC chose to award funds to two well-established national NGOs: Health Systems Trust (HST), who had worked for more than 10 years with the DOH to provide clinical technical assistance; and AURUM Health Institute, to continue support for human resources. Of note is HST’s greater experience in systems strengthening and capacity-building, rather than direct service support. EGPAF has been working closely with both HST and AURUM to assure a seamless transition to these national organizations by the end of Project HEART. Additionally, two previous EGPAF sub-grantees, McCord Hospital and University of Capetown in South Africa, have received direct USG funding.

PROJECT GOALS AND OBJECTIVES Worldwide, Project HEART’s major goal was to support local governments in scaling up family-focused adult and pediatric HIV care and treatment and prevention of mother-to-child transmission (PMTCT) services, with a focus on quality. EGPAF provided global leadership and management for Project HEART to scale up quality HIV prevention, care, and treatment services, as well as to transition the provision of these services to national organizations or governments. The HIV/AIDS epidemic in South Africa has evolved dramatically over the past eight years, as has the country’s response to the epidemic. The goals of Project HEART/South Africa and EGPAF evolved accordingly. In recent years, EGPAF’s goals and objectives in South Africa were focused in five broad areas: • Adult HIV care and treatment services; • Pediatric HIV care and treatment services; • Prevention of mother-to-child transmission of HIV services;

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 9

PROJECT HEART: SOUTH AFRICA

TABLE 1. PROJECT HEART GOALS IN SOUTH AFRICA Adult HIV Care and Treatment Services Goal 1

Expand quality antiretroviral therapy services for people with HIV.

Goal 2

Expand linkages between communities and facilities to improve prevention, care, and treatment.

Goal 3

Strengthen the existing monitoring and evaluation (M&E) systems.

Pediatric HIV Care and Treatment Services Goal 1

Ensure integrated prevention, care, and treatment of infants and young children.

Goal 2

Enhance the identification of HIV-exposed and -infected infants.

Goal 3

Strengthen community capacity to demand and utilize pediatric HIV/AIDS care.

Goal 4

Strengthen the M&E of pediatric HIV/AIDS care and treatment services.

Prevention of Mother-to-Child Transmission Services Goal 1

Expand access to PMTCT services and strengthen linkages to care and treatment.

Goal 2

Advance EGPAFâ&#x20AC;&#x2122;s technical and advisory role and establish a local advocacy presence.

Goal 3

Strengthen the existing M&E system.

Health Systems Strengthening Goal 1

Provide training, information, mentoring, and supportive supervision.

Goal 2

Build capacity of local organizations.

Goal 3

Strengthen and expand community linkages.

Goal 4

Build and support health information systems.

Goal 5

Strengthen quality improvement.

Transition to Local Partners Goal 1

Support the South African government to assume responsibility for the delivery of quality HIV services.

Goal 2

Transition Project HEART activities to local organizations, promoting health systems strengthening.

Goal 3

Transition local sub-grantees to direct U.S. government or other alternative funding.

Goal 4

Strengthen the management capacity of community-based organizations.

10 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

• Health systems strengthening; and • Transition to local partners, including the South Africa Department of Health, community-based organizations, and nongovernmental organizations. EGPAF sought to fulfill a series of goals as seen in Table 1.

PROJECT ACHIEVEMENTS At the start of 2011, EGPAF was supporting 54 care and treatment sites and 280 prevention of mother-to-child transmission (PMTCT) sites in 12 districts and one subdistrict in five different South African provinces. As of September 30, 2011, EGPAF had helped enroll more than 215,000 people into HIV care in South Africa, of whom more than 140,000 had been started on antiretroviral therapy (ART), including more than 14,000 children under the age of 15. More than 515,000 women in South Africa had received PMTCT services under EGPAF support.* Over the life of Project HEART, the number of EGPAF-supported sites, the number of people initiated onto ART, the number of women receiving PMTCT services, and the number of HIVexposed infants tested for HIV in these sites increased dramatically. EGPAF has also worked hard to help strengthen the South African health system and improve its response to the HIV/ AIDS epidemic. As of September 2011, EGPAF had transitioned 298 of its seconded staff members either to the South Africa

Department of Health (DOH) or to Aurum, the U.S. Centers for Disease Control and Prevention’s (CDC’s) new local partner. (The remaining seconded staff members either resigned to pursue other career opportunities or were unable to be absorbed by the DOH due to lack of funding or differences in the DOH’s organizational structure.) EGPAF transitioned McCord Hospital, one of its largest local sub-grantees, to direct U.S. government support in June 2010. EGPAF has produced a number of training manuals and conducted trainings for nurses, lay counselors, and other healthcare staff throughout South Africa. Through the nurse-initiated and -managed ART (NIMART) program, EGPAF has helped expand access to lifesaving ART for those who need it. EGPAF has also conducted monitoring and evaluation (M&E) activities at hundreds of sites nationwide and implemented a number of largescale quality improvement (QI) projects. Through its Community Linkages Program, EGPAF has created a sustainable model for extending the reach of HIV/AIDS services beyond the doors of health facilities and into the communities served by those facilities. By establishing community health forums, support groups for people living with HIV, clubs and camps for children affected by HIV, and grant programs for community-based health and advocacy organizations, EGPAF has empowered communities to address HIV/AIDS issues at the local level and has helped decrease HIV-related stigma.

* All care and treatment data in this section, including pediatric data, reflect numbers collected through the July-September 2011 quarter. PMTCT data, which is collected on a different timeline, reflect numbers collected through the Jan-Mar 2011 quarter. (These are the last quarters for which final, validated data are available.)

TABLE 2. PROJECT YEAR 8 (PY8) TARGETED AND ACTUAL NUMBER OF PERSONS EVER ON ANTIRETROVIRAL THERAPY AND NUMBER OF CARE AND TREATMENT SITES SUPPORTED BY PROJECT HEART/SOUTH AFRICA** Cumulative Total Ever on ART

Number of Care and Treatment Sites

Project HEART/ South Africa PY8 Target (6-month target through September 2011)

Actual by September 30, 2011

Project HEART/ South Africa PY8 Target (6-month target through September 2011)

Actual by September 30, 2011

174,148

142,644 (81.9%)

51 (85.0%)

** Numbers in parentheses indicate the percentage of the target achieved.

As shown in Table 2, at the conclusion of Project HEART, EGPAF was supporting 51 HIV care and treatment sites nationwide. PY8 targets were not met, in large part due to the scale-down of the project in preparation for closeout. As the year progressed, project activities wound down, seconded staff were transitioned, and new sites were not opened during the last few quarters of the project.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 11

PROJECT HEART: SOUTH AFRICA

improvements; family-centered approaches to comprehensive care; community education, sensitization, and mobilization; support for the development of guidelines; and creation of an enabling policy environment at the national level. These activities support the SAG’s National Strategic Plan objectives of scaling up coverage of the comprehensive care and treatment package and increasing the retention of adults on ART.12

CARE AND TREATMENT, PEDIATRIC CARE, AND PREVENTION OF MOTHER-TO-CHILD TRANSMISSION OF HIV Through its support of the South African government’s (SAG’s) comprehensive HIV and AIDS care, management, treatment, and support (CCMT) and PMTCT programs, Project HEART/South Africa sought to vastly increase the numbers of children and adults living with HIV who receive ART; increase access to, and improve the effectiveness of, PMTCT services; and increase the linkage and integration between CCMT and PMTCT.

EGPAF, in partnership with the DOH, implemented many strategies to increase coverage of HIV care and treatment, including the following:

ADULT CARE AND TREATMENT EGPAF supported the DOH in implementing HIV care and treatment services using an integrated approach. The approach was based on improving quality of services through didactic and on-the-job training and mentoring; capacity building; infrastructure

• Identify human capacity gaps and second EGPAF staff to EGPAF-supported sites; • Implement down-referral and train nurses and midwives on NIMART;

FIGURE 2. NUMBER OF PERSONS EVER ON CARE AND ART, AND NUMBER OF CARE AND TREATMENT SITES REPORTING BY QUARTER 60

250,000

200,000

40 150,000 30 100,000 20 50,000

Cumulative number of patients ever enrolled in HIV care

Cumulative number of patients ever started on ART

2011 Q3

2011 Q2

2011 Q1

2010 Q4

2010 Q3

2010 Q2

2010 Q1

2009 Q4

2009 Q3

2009 Q2

2009 Q1

2008 Q4

2008 Q3

2008 Q2

2008 Q1

2007 Q4

2007 Q3

2007 Q2

2007 Q1

2006 Q4

2006 Q3

2006 Q2

2006 Q1

2005 Q4

2005 Q3

2005 Q2

2005 Q1

2004 Q4

10 0

Number of reporting sites

As shown in Figure 2, the number of EGPAF-supported care and treatment sites rose steadily over time, as did the number of patients enrolled in HIV care and started on ART. This figure shows the cumulative number of patients ever enrolled at currently supported sites. Each bar reflects only the sites supported during that specific quarter. During quarters in which EGPAF ended support to a number of sites, such as the third quarter (Q3) of 2009 and during the last few quarters of the project, the cumulative numbers dropped. In Q2 2011, the number of reporting sites dropped as Project HEART began to wind down and sites were transitioned to government and local partners.

12 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

• Provide on-site mentoring, training, and supervision at supported sites;

Although all HIV-positive children under one year of age are eligible to be fast-tracked for ART, the entry point to treatment of children still remains the identification of HIV status. In 2010, the DOH introduced a new Road to Health Card (RTHC), which includes the mother’s HIV status, to aid with identification of HIV-exposed infants. After the release of the RTHC, EGPAF worked closely with health facilities to improve screening and identification of HIV-exposed babies at maternal and child health clinics through the routine offering of HIV counseling and testing.

• Integrate TB and HIV services; • Implement QI strategies; and • Support community outreach and strengthen community linkages with health facilities. PEDIATRIC CARE AND TREATMENT Under Project HEART, EGPAF made significant progress in the scale-up of pediatric HIV care and treatment in South Africa. At the beginning of 2010, new guidelines for PMTCT and adult and pediatric ART were introduced by the SAG. Based on these new

EGPAF identified significant barriers to identifying, enrolling, and maintaining children in HIV care and treatment. These barriers include poor execution of testing for early diagnosis of HIV infection in children; fragmented maternal and child health services; a lack of a standardized national PMTCT coding system; a lack of family-centered clinics; weak community linkages; shortcomings in leadership and management in the public health

guidelines, the SAG aimed to reduce mother to-child-transmission of HIV to less than 5 percent and to further improve case management of HIV-infected children.

FIGURE 3. NUMBER OF CHILDREN NEWLY STARTED ON ART BY QUARTER OF REPORT, PROJECT HEART IN SOUTH AFRICA

1,500

Number of Children

1,200

900

600

300

Jul-Sep 2011

Apr-Jun 2011

Jan-Mar 2011

Oct-Dec 2010

Jul-Sep 2010

Apr-Jun 2010

Jan-Mar 2010

Oct-Dec 2009

Jul-Sep 2009

Apr-Jun 2009

Jan-Mar 2009

Oct-Dec 2008

Jul-Sep 2008

Apr-Jun 2008

Jan-Mar 2008

Oct-Dec 2007

Jul-Sep 2007

Apr-Jun 2007

Jan-Mar 2007

Oct-Dec 2006

Jul-Sep 2006

Apr-Jun 2006

Jan-Mar 2006

Oct-Dec 2005

Jul-Sep 2005

Apr-Jun 2005

Jan-Mar 2005

As shown in Figure 3, the number of children newly on ART during each quarter steadily increased since the beginning of Project HEART/South Africa. The rise in July–September 2006 was due to a large number of sites reporting for the first time. The slight drop in Q3 2009 data is due to two factors: a large number of sites reporting for the first time in April–June 2009 and a lesser number of sites reporting data in July–September 2009 after the transfer of nine sites in Free State to other partners. Overall, the number of children enrolled in ART increased fairly steadily until the last few quarters. The drop in numbers over the last few quarters reflects the fact that sites were being transitioned to government and local partners as Project HEART drew to a close.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 13

PROJECT HEART: SOUTH AFRICA

system; skills limitations and lack of confidence among health-care providers; issues of stigma, discrimination, and disclosure; and other socioeconomic factors. EGPAF undertook several actions to address these issues, including training and mentoring health staff on PMTCT and ART guidelines, as well as on a variety of other health policies and practices, and building a strong, sustainable Community Linkages Program. EGPAF also partnered with the Baylor International Pediatric AIDS Initiative to provide training in pediatric care and treatment to South African health-care providers. PREVENTION OF MOTHER-TO-CHILD TRANSMISSION OF HIV Over the past eight years, Project HEART/South Africa expanded support for PMTCT services to prevent pediatric HIV infection wherever possible. It also provided a continuum of HIV care and treatment services for HIV-infected children and families. The new PMTCT guidelines implemented from the beginning of April 2010 provided a new opportunity to further reduce maternal and infant mortality from HIV/AIDS. Under those guidelines, all pregnant women who attend antenatal clinics are to be offered HIV counseling and testing during their first visit. Pregnant women testing positive for HIV are to receive antiretroviral (ARV) prophylaxis from 14 weeks*, and those eligible for ART for their own health also should start at this stage. All HIV-negative 14 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

women are to be retested at or around 32 weeks, or six weeks after the initial test. HIV-exposed babies are to receive nevirapine (NVP) within 72 hours postdelivery and continue for six weeks postnatally or for the duration of breastfeeding. HIV polymerase chain reaction (PCR) testing should be done at six weeks, and cotrimoxazole prophylaxis should be initiated at the same time. EGPAF, in collaboration with the DOH, supported implementation of NIMART in EGPAF-supported sites. Participation in and support of the HIV counseling and testing drive prioritize the testing of children. The integration of services facilitates the process of testing HIV-exposed children during visits to child health clinics. To further strengthen the link between care and treatment and PMTCT, EGPAF and its partners used a comprehensive training approach for site- and district-level staff, covering both program areas and emphasizing the importance of service integration to ensure the continuum of care.

* HIV-positive pregnant women should receive AZT from 14 weeks gestation on, or lifelong ART for their own health if eligible (CD4 cell count <350 cells/mm3). The maternal PMTCT regimen is: antenatal AZT from 14 weeks; Intrapartum sdNVP, three hourly AZT, and a postpartum single dose of TDF and FTC.

FIGURE 4. PERCENTAGE DISTRIBUTION OF CHILDREN EVER IN CARE AND EVER ON ART BY AGE GROUP DURING JULY–SEPTEMBER 2011, FOR SITES REPORTING AGE BREAKDOWNS, PROJECT HEART/ SOUTH AFRICA 100%

Percentage of Children

80%

61%

60%

62% 5–14 years old 2–4 years old

40% 26%

25%

14%

13%

< 2 years old

20%

0% Ever in Care (13,219)

Ever on ART (9,576)

All EGPAF-supported sites in South Africa reported pediatric age breakdown data. Of note, 12.7 percent of children ever on ART during July–September 2011 were younger than two years of age, which is up from 10.7 percent in July–September 2009. There remains room for improvement in the testing and initiation of the youngest children on ART. The total number of children ever in care or on ART for sites reporting pediatric age breakdown data is denoted in parentheses in Figure 4.

FIGURE 5. PMTCT CASCADE FOR JANUARY–MARCH 2011, PROJECT HEART/SOUTH AFRICA

# of pregnant women eligible for counseling

40,033

# of pregnant women who received counseling

34,043

# of pregnant women tested for HIV

31,881

# of pregnant women who received test results

31,725

# of pregnant women who tested positive for HIV

7,722

# of HIV-positive pregnant women

10,696

# of HIV-positive pregnant women who received ARVs

8,566

# of infant ARVs distributed

4,793 0

5,000

10,000

15,000

20,000

25,000

30,000

35,000

40,000

45,000

Number of Patients PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 15

PROJECT HEART: SOUTH AFRICA

TABLE 3. TESTING OF HIV-EXPOSED INFANTS FOR JANUARY–MARCH 2011 AND APRIL–JUNE 2011, PROJECT HEART/SOUTH AFRICA

Quarter

Number of HIVexposed Infants Tested for HIV at < 6 months of age

Number of HIVexposed Infants Tested for HIV at 6–12 months of age

Number of HIVexposed Infants Tested for HIV at > 12 months of age

Number of HIVpositive Infants

Jan.–Mar. 2011

5,653

106

971

357

Table 3 shows the number of HIV-exposed infants tested during the January–March 2011 quarter. The pediatric team, quality assurance nurses, and PMTCT staff placed considerable emphasis in the past year on infant testing. However, there is a continuous need for an integrated approach promoting routine testing of all children of unknown status, including those older than six months, and more important, to have clear linkages among testing, diagnosis, and enrollment into care and treatment.

QUALITY IMPROVEMENT, TRAINING, AND MENTORSHIP The South African HIV prevention, care, and treatment system strives to provide universal, high-quality care services. EGPAF’s successful QI program in South Africa evaluated key aspects of HIV service-delivery programs in supported districts and sites and demonstrated improved health-care facility performance according to national guidelines and standards in KwaZulu-Natal, Free State, North West, Limpopo, and Gauteng provinces. EGPAF also implemented a variety of QI strategies in South Africa under Project HEART. Technical Support to the Department of Health EGPAF supported national QI initiatives with support for the development of the DOH’s HIV and AIDS Strategic Plan, advocating QI methodologies at national and provincial levels and providing significant support to the national CCMT and PMTCT programs. EGPAF has been an integral partner in implementing the DOH’s Accelerated PMTCT plan (A-Plan), using QI interventions in three districts: Maluti-a-Phofung in Free State, Metsweding in Gauteng, and Nongoma in KZN. All of these districts noted improvement in quality indicators within the PMTCT cascade from January–June 2009 to January–June 2010, thus indicating that QI strategies may play a part in improving health-care systems. Metsweding was awarded the best performing A-Plan district by the national DOH. Among the three supported districts, there was a 56 percent increase in PCR testing of HIVexposed babies, from 45 percent to 70 percent.

16 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

EGPAF supported districts in monitoring the six priority areas of the District Health Information System’s Core Standards for Health Establishments, in coordination with district quality assurance coordinators. The six areas are a positive and caring attitude, the cleanliness of the facility, waiting times, patient safety and security, infection control, and availability of medicines and supplies. EGPAF staff also assisted district teams in analyzing DOH quality assurance tools on a regular basis. Facility Assessments Using the EZ-QI Tool EGPAF provided technical assistance and mentorship to districts and facilities to conduct QI assessments at the facility level using the EZ-QI tool. This simple tool, developed in collaboration with John Snow, Inc., can be used by facility staff at baseline and at established follow-up periods to assess progress on a number of key PMTCT and care and treatment QI indicators. The EZ-QI tool focuses on auditing patient files to assess the quality of care provided to patients according to national guidelines. Same-day results allow for immediate discussion of findings with the site’s QI team, providers, and other staff. EGPAF used this tool to audit more than 2,952 patient files at supported sites. Quality Improvement Teams and Activities Facilities and districts with performance scores beneath a set threshold were targeted for joint QI and supportive supervision visits with District Health Management Team (DHMT) staff to transfer skills in QI strategies and interventions and to create sustainable systems. At target districts, QI task teams were established to collaboratively set goals and targets with staff from the district and facilities. These teams met quarterly and provided a forum for learning sessions where data review sessions, sharing

TABLE 4. EZ-QI TOOL INDICATOR PERFORMANCE, 2010

Care and Treatment Indicators • 94% of patients had CD4 test at enrollment. • 76% of patients had CD4 done during the review period.

PMTCT Indicators • 52% of HIV+ pregnant women had documented baseline CD4. • 76% of eligible HIV+ pregnant women were on ART.

• 69% of eligible patients were prescribed cotrimoxazole.

• 90% of HIV+ pregnant women received PMTCT prophylaxis.

• 57% of patients on ART had adherence counseling.

• 78% of HIV-exposed infants received PMTCT prophylaxis.

• 57% of patients were screened for TB. • 88% of patients had a weight recorded in the review period.

of successful models, and mentorship occurred.13 Site-based QI teams met on a routine basis to review site data; to design, implement, and review QI projects; and to identify gaps in the system. Various activities were implemented to address issues that affect quality of care. EGPAF facilitated the formation of 157 functional facility-based QI teams, which have implemented more than 200 QI activities to address identified gaps in quality of care. Training Training of health facility staff was an important part of EGPAF’s strategy to strengthen district health systems, ensure sustainability, and streamline the transition process. EGPAF planned and oversaw hundreds of training sessions and workshops over the course of Project HEART on topics such as PMTCT guidelines, infant and young child feeding, NIMART, management of ART and PMTCT registers, and M&E and QI methods. Individuals trained included professional nurses, facility managers, lay counselors, data capturers, community members, community-based organization (CBO) staff, social workers, support group leaders, and doctors. Training sessions varied greatly in size and scope—from weeklong workshops with several dozen participants to one-on-one meetings in which EGPAF project officers visited facilities and helped facility staff work through issues of data capturing, protocols and guidelines, general information, and systems management.

EGPAF TRAINING14 Trained in ART care: Physicians: 932 Nurses: 1,966 Other health-care workers: 1,919 Trained in non-ART care: 588

During the last three years of Project HEART, EGPAF trained more than 1,000 South African health-care workers on QI programs alone. Mentoring and Supervision EGPAF’s clinical mentorship and supportive supervision program in South Africa has been implemented at all EGPAF-supported sites. has the support of, and is promoted by, the DOH.15 Both mentorship and supportive supervision, which are complementary activities, are critical to ensure consistent application of national treatment guidelines and provision of high-quality care. The objectives of clinical mentorship are as follows: • Improve patient clinical outcomes; • Support decentralization of health-care delivery with highquality care;

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 17

PROJECT HEART: SOUTH AFRICA

“In August 2010, another Tlaseng nurse and I attended a training program on the prevention of mother-to-child transmission (PMTCT) of HIV, sponsored by the Elizabeth Glaser Pediatric AIDS Foundation. We learned about the new World Health Organization guidelines for PMTCT and how to follow those guidelines with our own patients. We have benefited a great deal from this training. Last year, 63 pregnant mothers tested HIV positive at Tlaseng. Out of the 63 babies born to those mothers, only 3 contracted HIV.” Sister Liza Kheswa, head nurse at Tlaseng Health Clinic in Rustenburg, South Africa

• Strengthen health-care providers’ problem-solving and clinical decision-making skills; and • Build providers’ capacity to manage or refer unfamiliar or complicated cases, as appropriate. The mentor in this EGPAF-supported program is a health-care professional with several years of clinical experience in fields such as pediatrics, TB, antenatal care, and HIV/AIDS. The mentees are experienced health-care workers who may lack expertise and confidence in the mentor’s specific field. In support of the mentorship program, EGPAF has integrated the complementary activity of supportive supervision, which “focuses on the conditions required for proper functioning of the clinic and clinical team.”16 Whereas clinical mentorship is critical for promoting improved health-care delivery skills, supportive supervision focuses on qualities such as leadership and management of health services. EGPAF has provided supportive supervision on issues such as information management and service-delivery planning. Through supportive supervision, EGPAF has provided much-needed support to facility managers in planning their services in a systematic and efficient manner. Mentoring is also an important tool for training qualified healthcare workers in smaller facilities to provide HIV-related care and treatment. In this way, mentoring supports the decentralization

18 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

of HIV-related care from the referral hospital to primary- and secondary-care facilities. Through its partnership with the University of California-San Francisco’s ASPIRE program, EGPAF provided direct clinical mentorship training to nearly 200 nurses, physicians, and clinical officers, as well as capacity building (training of trainers, mentoring of mentors) to 41 new trainers and mentors. Quality Improvement Training, Training of Trainers, and Mentorship EGPAF provided training and on-site mentorship to provincial, district, and facility staff on QI methodology. In an effort to promote sustainability and local leadership of the QI program, EGPAF also provided training of trainers in QI methods for specific provincial and district DOH staff. Between 2009 and 2011, EGPAF trained more than 1,000 health-care professionals on QI strategies. MONITORING AND EVALUATION EGPAF’s strong M&E approach was a key aspect of Project HEART/South Africa. EGPAF provided technical assistance and leadership on all integral data management activities at the site, district, and provincial levels in KZN, Free State, North West, Limpopo, and Gauteng provinces. EGPAF also provided technical assistance to the DOH at the national level. Support to the National, Provincial, and District Departments of Health EGPAF provided technical and human resources to support M&E at the DOH, while also maintaining a productive working relationship with the DOH at all levels. EGPAF worked with the DOH to ensure adequate M&E staffing at supported facilities through the hiring and secondment of skilled M&E staff. It also provided significant technical support to the planning and design of national and provincial data collection tools, including ANC and ART registers. EGPAF M&E staff were involved in the PMTCT and ART M&E task teams and working groups at the national, provincial, and district levels. Facility-Based Support Over the past eight years, EGPAF M&E staff provided ongoing M&E support to more than 300 PMTCT and care and treatment facilities, helping the DOH ensure that patient management and tracking systems were implemented and used at all sites. EGPAF also provided regular Health Management Information System (HMIS) supportive supervision to facility staff. This on-site support included site readiness and preparation assessments, M&E

support visits, assistance with the implementation of national data collection tools and guidelines, and data quality assessments.

integrated approach to HIV/AIDS management in underserved communities.

• Data collection and reporting: EGPAF assisted facilities and districts in reporting routine data to the DOH and to donors. EGPAF M&E staff conducted an average of 20 site-support visits per month and were responsible, in conjunction with facility and district staff, for eight years of successful reporting to incountry and international partners and donors under Project HEART.

Through the Community Linkages Program, EGPAF strove to consolidate the efforts of CCMT and PMTCT activities by empowering communities to take responsibility for their health-care needs. The Community Linkages Program therefore promoted district health systems strengthening and paved the way for a smooth transition of Project HEART funding from international to local organizations.

• M&E training and mentorship: EGPAF’s expert M&E staff provided M&E and data management training, followed by onsite mentoring, coaching, and supportive supervisory trainings

Fundamental to the Community Linkages Program were collaborations with a broad array of CBOs, which facilitated the links between health centers and communities.

to staff at various levels of service delivery. Both district and facility staff, including data capturers, professional nurses, and management staff, were trained on HMIS, DOH registers and data collection tools, and other M&E concepts. EGPAF staff were trained in advanced M&E concepts and programs. • Data quality and data use: EGPAF placed strong emphasis on data quality and use at the district and site levels. In collaboration with the DOH, EGPAF supported site- and district-level staff in critically analyzing data to enable them to identify problem areas and develop targeted, evidence-informed strategies aimed at improving the care and treatment services delivered to patients. EGPAF facilitated the formation of data review teams and health information committees in all EGPAF-supported districts and promoted district-level data use by participating in and leading monthly or quarterly district-level data review meetings. At the site level, EGPAF helped ensure that sites adopted the culture of routine data assessment and use and encouraged the display of site data at the facility to help inform decision making. EGPAF also designed and implemented a Register Tracking Tool, which includes a comprehensive, standard set of indicators to enhance data quality. COMMUNITY LINKAGES A critical component of increased access to health services is ensuring a comfortable, supportive environment in which women, children, and families are encouraged to seek care. Through its Community Linkages Program, EGPAF worked with local partners to strengthen linkages between communities and health facilities, thus increasing direct access for communities to HIV/ AIDS services. This process extended the continuum of care for communities beyond the health-care facility and promoted an

Facilitating the Establishment of Community Health Forums The community health forum is a formalized community structure that works to identify health challenges in the community and strategies to address those challenges. Forums include community members (as well as ward counselors and traditional health practitioners), district health staff, and other stakeholders, such as nongovernmental organizations and government departments. Such forums promote active referrals among communities and relevant SAG departments and provide a platform for feedback between the community and the SAG. The goal of establishing community health forums was to improve and strengthen HIV/ AIDS services and facilitate the response to community health needs. Facilitating the Establishment of Support Groups EGPAF strengthened the involvement and leadership of people living with HIV in prevention, care, and treatment through the mobilization of affected people to form family, children, women, and caregiver support groups. To promote the sustainability of support groups, EGPAF, in collaboration with the DOH, implemented the Integrated Access to Care and Treatment (I ACT) support group framework, which provides guidelines on the content and structuring of support groups. Topics covered in support groups include peer education, emotional support, treatment literacy, and adherence and disclosure as it pertains to children and adults. EGPAF provided training to support group leaders on the I ACT guidelines.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 19

PROJECT HEART: SOUTH AFRICA

Community Mobilization and Awareness EGPAF worked closely with DHMTs to promote HIV/AIDSrelated DOH campaigns. Campaigns were planned according to the South African Health Calendar and have included awareness campaigns for HIV-related issues, including PMTCT, HIV counseling and testing, and prevention of violence against women. EGPAF engaged with community groups to ensure that community-mobilization activities continued on an ongoing basis and according to community needs.

Ariel Camps and Ariel Clubs In March 2010, EGPAF embarked on an initiative to establish Ariel Clubs (named for Elizabeth Glaser’s daughter, Ariel, who died of AIDS-related illnesses at age seven) for children living with HIV. EGPAF also conducted residential Ariel Camps, which provide life skills education, counseling, and recreation for children. Both Ariel Clubs and Ariel Camps provide a secure environment for children to address issues such as HIV disclosure, treatment adherence, and the stigma of living with HIV.

Community-Based Organization Technical Support and Capacity Building EGPAF engaged with CBOs, community health workers, and the DOH to identify gaps and to develop responsive technical support

Community Linkages Program Results

to improve the provision of treatment, care, and support to the community and people living with HIV/AIDS. Technical support provided included the following: • Community-oriented comprehensive HIV/AIDS management; • Psychosocial support; • Basic HIV/AIDS social mobilization training; • PMTCT; • Infant feeding options and infection control; • Community-integrated management of childhood illness; • Project management for CBOs; and • CBO organizational development. Small Grants to Community-Based Organizations EGPAF provided small grants to CBOs to increase their responsiveness to community needs and to children and families affected by HIV. EGPAF developed a Community Small Grant Assessment tool, which qualified CBOs for small grants and in-kind donations. Grants facilitated the purchase of office supplies for program management, computers, educational games, children’s books, school uniforms for children affected by HIV, and bicycles for CBO members traveling the field to implement program activities.

20 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

• Community health forums: EGPAF has established 20 community health forums in Free State, Gauteng, Limpopo, North West, and Zululand. • Technical support: EGPAF has conducted about 70 trainings nationwide. • Community mobilization: EGPAF has supported more than 150 community awareness and mobilization campaigns nationwide. • Ariel Clubs: EGPAF has established 14 clubs—6 in Zululand, 6 in Free State, and 2 in Umgungundlovu District. • Ariel Camps: EGPAF has conducted seven Ariel Camps in four provinces. • Support groups: EGPAF has facilitated the formation of about 80 support groups in 5 provinces. • Loss to follow-up/defaulter rate: In 2008, in Olievenhoutbosch Township, a EGPAF-supported CBO became a down-referral site for ARV treatment, meaning it could begin dispensing ARV medications directly to HIV-positive patients. Between 2008 and 2011, loss to follow-up at Olievenhoutbosch decreased from 12 to 7 percent, and the defaulter rate (the percentage of clients who miss appointments by more than seven days) decreased from 20 to 8 percent.

LESSONS LEARNED EGPAF has learned several important lessons over the past eight years of administering Project HEART/South Africa. • For a variety of reasons, health-care providers are often hesitant to initiate children on antiretroviral therapy (ART). Specific pediatric-focused training, such as that provided by the partnership with Baylor International Pediatric AIDS Initiative, followed by supportive supervision and mentorship, can greatly increase provider confidence in initiating and managing children on ART. • The release of new guidelines, such as the prevention of mother-to-child transmission and nurse-initiated and -managed ART guidelines released during the later years of Project HEART, are critical opportunities to improve the implementation of HIV/AIDS services. Training of health-care providers upon the release of new guidelines is essential. • Department of Health (DOH) staff at all levels must be involved in all program interventions, especially quality improvement (QI) initiatives. When implementing an activity or program in a specific site or district, DOH personnel at the provincial and district levels must be made aware of, and preferably be involved in, the activity. Particularly when performing technical assistance and QI at the site level, it is helpful to involve district staff so that they are aware, and so they also have the opportunity to further develop their technical assistance or supervision skills. This promotes efficient program planning. • Community engagement, mobilization, and education are essential to ensuring and scaling up HIV/AIDS service demand, uptake, and adherence. Community health forums are an effective strategy for engaging, mobilizing, and educating communities on the availability and impact of HIV/AIDS services offered at health facilities. • Administrative support on such issues as information management, business planning, monitoring and evaluation training, and human resources are essential to strengthening health systems and ensuring high-quality service delivery and the long-term sustainability of programs.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 21

PROJECT HEART: SOUTH AFRICA

SOUTH AFRICA STORY OF HOPE: TINY NDLOVU My name is Tiny. I am 56 years old, and I am the founder and manager of the Badirammogo Caregivers organization in Mogajane village, Rustenburg, North West Province, South Africa. Badirammogo, which means “working together,” has been in this community since 1997. Our mission at Badirammogo is to help sick, elderly, and disabled people and to provide follow-up services to people infected with HIV and tuberculosis. We also assist children who have been orphaned due to HIV/AIDS. There are 25 caregivers in Badirammogo who cover four villages. Before Badirammogo was founded, people often became sick and died without ever visiting the health clinic. Today, our caregivers go to the homes of sick people and encourage them to go to the clinic for testing and treatment. We educate those in the community on the importance of being tested for HIV and TB; and when people test positive for either one, we visit them every day to monitor them and ensure they take their medication. (In fact, we visit TB patients every day for six months to ensure they finish their medication courses.) We also help find HIV-positive patients who have been “lost to follow-up,” meaning they have missed their health clinic appointments for the past three months and have defaulted on their antiretroviral treatment. We believe in doing all we can to help. We bathe people who are sick. We organize food donations for those who can’t afford to eat, especially those living with HIV, for whom proper nutrition is very important. We also work with children and provide school uniforms for those who have been orphaned by HIV. We help HIV-positive children get medication, grants, and birth registrations. The Elizabeth Glaser Pediatric AIDS Foundation and the South Africa Department of Health have trained Badirammogo caregivers on basic HIV/AIDS management, infant and young child feeding, formation of support groups, and the best ways to manage childhood illnesses. EGPAF has also supported us with several in-kind donations that help us do our work; they gave us money to buy furniture and provided us with computers. We have also received a refrigerator, a stove, medical supplies, and a fleet of bicycles. My staff is very excited about the bicycles. Previously, caregivers had to walk long distances between the homes of our clients. With the bicycles, they will be able to travel faster and provide help to more people each day. Our next goal is to establish a hospice center for sick and elderly patients who are unable to care for themselves at home. Our local chief has given us the land already; we must simply raise the money to build the center. Badirammogo’s work is making a difference here. Since we began monitoring HIV and TB treatments, fewer people are dying. I am very, very impressed with the support that EGPAF has provided, and I am grateful for all they are doing to help Badirammogo and this community. I don’t even have the words to express my thanks!

22 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

Tiny receives paperwork for a much-needed grant from EGPAF.

Bicycles for the Badirammogo caregivers.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 23

PROJECT HEART: SOUTH AFRICA

FUTURE DIRECTIONS

REFERENCES

The Elizabeth Glaser Pediatric AIDS Foundation will no longer have a significant presence in South Africa to support continued transition activities beyond February 2012. EGPAF is meeting weekly and sharing all program information with the Department of Health, HST, and AURUM to assure a seamless transfer of support to national organizations. The Board of the AGPAFSA has decided to be dormant for one year at the time of writing.

EGPAF feels privileged, honored, and proud to have had the opportunity to support the South African government in their commitment to scale up and increase access to HIV prevention, care, and treatment services in South Africa. Over the last eight years, EGPAF has worked to strengthen capacity within DOH structures to ensure continued expansion of quality service delivery. EGPAF, together with the DOH, has also empowered local organizations to provide continued support to national, provincial, and district health management teams after the conclusion of Project HEART.

The World Factbook: South Africa. CIA Factbook Web site. https:// www.cia.gov/library/publications/the-world-factbook/geos/sf.html. Updated November 15, 2011. South African Government–U.S. Government Partnership Framework to Support the Implementation of the HIV/AIDS and TB Response (2012–2017). Signed 2010. 2

National Department of Health. The National Antenatal Sentinel HIV and Syphilis Prevalence Survey. Pretoria, South Africa: National Department of Health; 2010. 3

Country Progress Report on the Declaration of Commitment on HIV/ AIDS, 2010 Report. UNAIDS Web site. http://www.unaids.org/en/ dataanalysis/monitoringcountryprogress/2010progressreportssubmittedb ycountries/southafrica_2010_country_progress_report_en.pdf. 4

National Department of Health. The National Antenatal Sentinel HIV and Syphilis Prevalence Survey. Pretoria, South Africa: National Department of Health; 2010. 5

Joint United Nations Program on HIV/AIDS (UNAIDS). UNAIDS Data Tables. Geneva: UNAIDS; 2011. http://www.unaids.org/en/media/ unaids/contentassets/documents/unaidspublication/2011/JC2225_ UNAIDS_datatables_en.pdf. 6

U.S. Centers for Disease Control and Prevention (CDC). PMTCT: A Winnable Battle in South Africa. CDC Web site. http://www.cdc.gov/ globalhealth/stories/PMTCT.htm. 7

World Health Organization (WHO). Global Report 2010.

Delivery Agreement for Outcome 2: A Long and Healthy Life for All South Africans. Health-e News Service Web site. http://www.health-e.org. za/documents/3771ccea0610904ff0c3de0f09f21039.pdf. 9

South African National Strategic Plan 2007–2011.

Youngleson, Nkurunziza, Jennings, Arendse, Mate, and Barker, 2010.

Clinical Mentorship Manual for Integrated Services, January 2011, DOH 15

World Health Organization (WHO). Recommendations for Clinical Mentoring to Support Scale-up of HIV Care, Antiretroviral Therapy, and Prevention in Resource-constrained Settings. Geneva: WHO; 2006, 9. 16

24 ELIZABETH GLASER PEDIATRIC AIDS FOUNDATION | PEDAIDS.ORG

The Elizabeth Glaser Pediatric AIDS Foundation is a nonprofit organization dedicated to preventing pediatric HIV infection and eliminating pediatric AIDS through research, advocacy, and prevention, care, and treatment programs. Founded in 1988, the Foundation works in 16 countries around the world.

PROJECT HEART END–OF–PROJECT REPORT: SOUTH AFRICA 25

www.pedaids.org 1140 Connecticut Avenue NW, Suite 200 Washington, D.C. 20036 t 202.296.9165 f 202.296.9185 e info@pedaids.org

facebook.com/hivfree @EGPAF