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Table of contents

4 6 8 10 16 28 40 42 46 48 50

executive summary

Uganda and HIV/AIDS

Prevention of Mother to Child Transmission OF HIV in Uganda

AVSI and the PMTCT program

Prevention

the pillars of Northern Uganda

war and aids

Treatment. A cure for AIDS?

hoima

future plans

conclusions


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Executive summary

30 years’ fight against AIDS, 10 years’ prevention of mother-to-child transmission Promote gender equality and empower women. Reduce child mortality. Improve maternal health. Combat HIV/AIDS, malaria and other diseases. Ambitious goals that the United Nations aim to achieve by 2015. The goals seemed unachievable at the launch. This year, three years away from the deadline, meeting targets seems possible. Various programs in different countries contribute to achieve the goals. One of the programs that contributes to the reduction of child mortality, improves maternal health, and combats HIV/AIDS is prevention of mother-to-child transmission (PMTCT).

197

,343

MOTHERS RECEIVed HIV PREVENTION SERVICES IN THE health CENTERS SUPPORTED BY AVSI

PMTCT is a method to reduce the risk of infection of a child by an HIV positive mother. HIV is transmitted before, during and after childbirth. It can be prevented through education about sexual behavior and risk reduction, the provision of antiretroviral therapy and prophylaxis, obstetric interventions and changes in breastfeeding practices. PMTCT does not only offer mothers the chance of having healthy babies, it also offers regular antenatal services. Through improving services for pregnant women, fathers and children, and community involvement, PMTCT programs can be successful. AVSI has included PMTCT in its health programs since 2002. In northern Uganda AVSI was the pioneer in providing PMTCT services in existing hospitals and health centers. Over the years a comprehensive package was developed, in collaboration with government and community actors in the area, and has resulted into an increased uptake of ANC and PMTCT services.

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94

%

PERCENTAGE OF MOTHERS ACCEPTING TO TEST FOR HIV


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Thanks to AVSI’s support 197,343 mothers accessed antenatal services at hospital and health centers in northern and western Uganda. Of these 187,002 (94%) accepted to be tested for HIV. HIV prevalence in pregnant women in the AVSI supported sites is 6.4%, in line with the national prevalance. The number of women attending antenatal care, and tested for HIV tripled between 2002 and 2011. As well the number of partners accepting to come with the pregnant women for ANC, and be tested for HIV, increased dramatically over the past ten years, from 6.3% in 2002 to 73.6% in 2011. This increase is a great success of AVSI’s PMTCT program, as male involvement at national level is still low. The catchment area of AVSI’s PMTCT program, which involved 4 hospitals and 37 health centers over the years, serves a population of 1 million.

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43

,441

MEN WHO ACCESSED HIV PREVeNTION SERVICES


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Uganda and HIV/AIDS

Uganda is well known for its comprehensive and timely action in the fight against HIV and AIDS. Strong government leadership, broad-based partnerships and effective public education campaigns all contributed to a decline in the number of people living with HIV and AIDS. Although there have been great successes, the consequences of AIDS are still present across the country.

6.4

%

hiv prevalence in uganda

The first case of AIDS was diagnosed in Uganda in 1982.1 A rapid spread of HIV took place through urban sexual networks and along major highways from its origin in the Lake Victoria region, resulting into a prevalence of up to 29 percent in urban areas.2 In 1987 Uganda’s first AIDS control programme was set up to educate the public about how to avoid becoming infected with HIV. The programme promoted the ABC approach (abstain, be faithful, use condoms), ensured the safety of the blood supply and started HIV surveillance.3 Community prevention work also began in this era, with a multitude of small organisations educating their peers about HIV. Between 1992 and 2002 the HIV prevalence fell dramatically from a peak in 1991 of around 15 percent among all adults, and over 30 percent among pregnant women in the cities4 to around 5 percent in 2001.5 Between 2000 and 2005 the prevalence stabilized. In 1998, the Ugandan government ran a trial to test the feasibility of rolling out antiretroviral treatment to people in developing countries.

135 yearly new infections

,000

Since 2004 free antiretroviral drugs have been available in Uganda. Currently just over 200,000 people in Uganda are receiving antiretroviral treatment, an estimated 39 percent of those in need, according to the latest WHO guidelines (2010).6 The latest guidelines recommend starting treatment earlier and have therefore increased the number of people estimated to be in need of treatment. The current HIV prevalence in Uganda is estimated at 6.4 percent among adults, and 0.7 percent among children. HIV prevalence is higher in urban areas (10.2%) than rural areas (5.7%). Women are disproportionately more affected than men (7.5% versus 5.0%). Urban residents were more likely to be infected (10.2%) than their rural counterparts (5.7%). It is estimated that about 135,000 new HIV infections occur annually, 18% due to mother to child transmission. An estimated 43% of new infections occur among people engaged in mutually monogamous heterosexual relationships.7 AIDS has killed approximately one million people, and significantly lowered life expectancy in Uganda.8 AIDS has reduced the country’s labour force, reduced agricultural output and food security, and weakened educational and health services. Currently there are an estimated 1.2 million people living with HIV in Uganda, which includes 150,000 children. An estimated 64,000 people died from AIDS in 2009 and 1.2 million children have been orphaned by Uganda’s devastating epidemic.9 The national adult HIV prevalence of 6.4% among women attending ANC translates every year to about 90,000 pregnant women who are infected with the virus. Without any interventions, this would result in about 24,000 HIV infected children every year.10

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18

%

of AIDS transmissions occur from mother to child


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Prevention of Mother to Child Transmission of HIV in Uganda Between 1994 and 1999 researchers showed that zidovudine (AZT) in pregnancy could reduce mother to child transmission of HIV.11 The HIVNET012 / Petra randomized, doubleblind, placebo-controlled trail which took place in South Africa, Uganda and Tanzania between 1996 and 2000 showed how zidovudine plus lamivudine starting at 36 weeks’ gestation, followed by oral intrapartum dosing and by 7 days’ postpartum dosing of mothers and infants is effective in preventing MTC. Without treatment transmission rates are 30%.12 In Uganda the most feasible regimen was discovered in a study that was carried out between 1997 and 1999 at Mulago hospital, Kampala. In this study mothers received a single 200mg tablet of nevirapine (NVP) at the onset of labour, and within 72 hours after birth the infants received a single dose of NVP syrup within 72 hours of delivery. In 2000 the Ugandan Ministry of Health started a pilot project on PMTCT in 5 sites in 3 districts: Nsambya Hospital, Mulago Hospital, Mengo Hospital, Arua, and Lacor Hospitals. The trial PMTCT programme included counselling and rapid testing for all women attending antenatal clinics and treatment for both mother and child following a positive diagnosis.13 Uganda launched the first PMTCT policy guidelines in 2002, following lessons learned from the pilot in 2000. The overall goal of the national PMTCT programme is to achieve an HIV free generation, with a target to reduce transmission by 50% (i.e. to 15% vertical transmission). The main drug given as prophylaxis was single dose Nevirapine tablet for mothers in labour and the baby within 72 hours after delivery. The number of PMTCT service delivery sites was expanded between 2005 and 2007 with emphasis on providing services to rural populations. Following further research and changing WHO guidelines, the Ugandan PMTCT guidelines were revised in August 2006, and subsequently in November 2009 and July 2010. From 2006 AZT was used from 28 weeks onwards as well as use of dual therapy (two drugs for PMTCT), 3TC +AZT from 32 weeks on wards. In labour women would receive a boost of Sd NVP, and infants would receive Sd NVP and AZT syrup for 7 days. Breastfeeding in the 2006 was promoted for at least 3 to 6 months to address the challenges in child survival. ART would be started if the mother had a CD4 count below 350. The period of breastfeeding was prolonged to 12 months in the 2009/10 guideline revision.14 Although implemention of the latest guideline revision is being implemented, stock outs of the new drugs hampered implementation earlier in 2011.15 The Ministry of Health announced that while option B (Antepartum AZT from 14 weeks, sdNVP + AZT/3TC at delivery, AZT/3TC for 7 days postpartum) is the ideal, option A (HAART from 14 weeks of pregnancy until 1 week after breastfeeding has stopped) is a phased manner that will be implemented till fully scaled up to implement option B in all sites.

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In 2010 the PMTCT and Care of Exposed Infants Scale Up plan of the Ugandan Ministry of Health 2010 – 2015 was released. This plan aims at having a generation free of HIV and AIDS in Uganda by 2015. The goals are to virtually eliminate MTCT, as well as reduce mortality and morbidity of HIV positive women and HIV exposed and infected infants.16 Over the years the number of health facilities providing routine HIV counselling and testing for pregnant women increased, raising the uptake of HIV testing to 80 percent of all women attending antenatal clinics.17 The proportion of HIV positive pregnant women receiving antiretrovirals for PMTCT increased from 12 percent in 2005 to 53 percent in 2009. Ministry of Health data shows that vertical transmission rates of HIV exposed children whose mothers received PMTCT services is 8%, while for those whose mothers did not receive PMTCT services it is 12%. According to the latest figures, 18 percent of new HIV infections in Uganda occurred through mother-to-child-transmission, although this figure may be higher as many births in Uganda take place outside healthcare facilities.18

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AVSI and the PMTCT program

The AVSI’s PMTCT program started in May 2002. It was designed following the pilot of the Ministry of Health and started in St Joseph’s Hospital in Kitgum Town Council, Kitgum district, and Ambrosoli Memorial Hospital in Kalongo, in Agago district. The program developed over the years following the national guidelines, and consultations with district authorities, including the District Health Offices, District HIV/AIDS Focal Persons, District PMTCT Focal Persons, and the health workers, CBO partners and donors. Currently the AVSI PMTCT program is implemented in Kitgum (population 222,737), Lamwo (164,754), Pader (237,100), and Agago (285,300) districts. The PMTCT program is designed to respond in a comprehensive manner, including increasing community knowledge of HIV/AIDS and PMTCT as well as providing available services and supporting the District Health Office and health workers to improve the quality and scale-up of PMTCT services offered to pregnant mothers, babies and their partners at the health center level. Additionally the program aims: • • •

to improve the follow up of mother and baby pairs and ensure a linkage between PMTCT and Pediatric HIV care and support services, to create and adopt sustainable community or local initiatives to promote child and maternal survival, empowering households socio-economically, to strengthen the general system in the region looking at human resources, infrastructure and monitoring and evaluation.

Since 2002 with funding from the CESAL, the Dutch Government, The Elisabeth Glaser Foundation, European Union, NUMAT, WFP, UNICEF, and USAID, AVSI provided over 197,343 mothers with PMTCT services. AVSI follows a holistic approach in its PMTCT program. While the pregnant woman and her child are direct beneficiaries, partners, other children, and relatives are involved in the program to serve the family and community. PMTCT activities are linked to other AVSI programs, to provide a comprehensive support package to the women and their families. Thanks to AVSI’s long standing presence in Uganda, close relationships have been established with the government and community actors in the areas of operation. AVSI’s programs start from the needs on the ground, and offer multi-sectoral solutions to developmental and emergency problems in the health, education, agricultural, and protection sectors.

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AVSI starts from what is existing and from the strengths of its beneficiaries. If focuses on the positives, and works towards growth and development through capacity building of local actors. All AVSI’s programs are implemented in collaboration with local organizations, and have a bottom-up approach.

Results achieved through PMTCT programs in the centers supported by AVSI in Uganda (2002-2011)

197,343

Women attanding ANC

187,002

AVSI’s “PMTCT package” includes the following activities: •

• • • • • • • •

AVSI’s distribution of medicines to hospitals for mothers during pregnancy (malaria, iron, vitamin A, folic acid), HIV testing, reagents for laboratories; training for PMTCT health workers: counselors, lab technicians, nurses; training courses for traditional birth attendants; financial support for health staff in health centers; home visits to mothers and children in their communities; support family support group activities; community awareness on PMTCT; construction and rehabilitation of facilities to provide ANC and PMTCT; system strengthening (coordination at health facility and district level).

Pregnant women pre-test counseled

180,477

Pregnant women tested for HIV

10,903

Pregnant women tested HIV+

43,441

Partners tested for HIV

2,948

Partners tested HIV +

7,487

Women received prophylaxis

77,791

Deliveries in health facilities

5,056

HIV + deliveries in health facilities

5,095

Infants given NVP

4,166

Infants tested for HIV

289

Infants tested HIV +

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In northern Uganda, which was affected by a 20 year lasting conflict, AVSI focused its support, and provided PMTCT services in health facilities serving the internally displaced population living in camps. AVSI followed the population back to their villages of origin with the PTMCT program when the return process started in 2006, peaking in 2009, with most of the displaced population having returned to their village of origin, living further away from health facilities than before.

Indicators AVSI PMTCT program in northern Uganda per year

Indicator

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

Total

ANC attendance

5,186

3,414

5,648

10,825

17,697

21,242

19,905

19,227

17,447

15,709

136,300

Pregnant women pre-test counseled

5,161

3,352

5,632

10,085

16,949

20,716

18,758

18,356

15,938

14,351

129,298

Pregnant women tested for HIV

5,049

3,449

5,582

9,398

15,704

20,640

18,393

18,703

16,675

14,732

128,325

Pregnant women tested HIV+

267

193

310

603

1,053

1,200

1,264

1,277

945

918

8,030

Partners tested for HIV

296

228

212

351

973

802

5,409

11,225

10,723

10,859

41,078

48

24

14

30

72

79

416

766

670

705

2,824

Women received prophylaxis

126

120

214

356

707

689

818

983

817

833

5,663

Deliveries in health facilities

N/A

N/A

2,877

6,568

9,018

9,274

10,165

9,877

9,385

8,495

65,659

HIV + deliveries in health facilities

N/A

N/A

173

330

491

550

708

775

806

670

4,503

Infants given NVP

N/A

N/A

161

301

448

524

695

793

709

620

4,251

Children tested

N/A

N/A

29

34

127

151

540

569

1,453

834

3,737

Children tested HIV +

N/A

N/A

3

3

8

13

46

37

94

39

243

Partners tested HIV+

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The road of PMTCT

Pregnant woman tested for HIV

Women free from HIV

Woman living with HIV

35%

-

+

Pregnant woman without HIV

Pregnant woman with HIV

ARV options

Triple ARV prophylaxis

ART

2%

Dual prophylaxis

2%

4%

Single dose NVP

12%

Child born without HIV

Child infected with HIV Breastfeeding options

Provides replacement feeding

Breastfeeding for 12 months while taking prophylaxis

2%

Breastfeeding without antiretroviral prophylaxis for 12 months

11%

Breastfeeding without antiretroviral prophylaxis for 24 months

22%

Child accesses paediatric HIV treatment and care No HIV transmission Possible HIV transmission HIV transmission

x%

Risk of transmission of HIV

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Coffee and pop corn Sister Betty has coffee and pop corn for breakfast. When you see her walking through the hospital wards, with her neat white uniform, her shoulder pads with the colors of Uganda – yellow, red, black , her mustard colored belt – the one specifically for senior obstetricians – and her nurse cap, large figure, serious look, you would not dare go near her. But then you see her working, welcoming tens of mothers who attend the antenatal clinic every day. Sister Betty is right there. She spends some more time with the younger mothers, during their first visit, and provides them with all the information they need, reassuring them that everything will be alright. They have seen their mothers, aunts, cousins deliver in their huts, helped by elder women, traditional experts in birth attendance. They think you only go tot he hospital when you are ill. Sister Betty insists: they should inform their neighbors at the village. Every pregnant woman should access antenatal care, since babies – even unborn babies still inside their mothers – need care.

Every mother who has been here knows that she is around. Sister Betty gives each of them special attention. A comforting nod. A smile of encouragement. Sister Betty has been in charge of the PMTCT program of St Joseph’s Hospital for 10 years, ever since AVSI launched the program in collaboration with the hospital. She took this job to heart so much that during each review meeting she comes up with new activities to improve the services, the increasing number of mothers, the treatment methods. The origin of the PMTCT program lies in the antenatal clinic (ANC), the place where antenatal classes are set up for pregnant women. AVSI has always encouraged as many women as possible to take part in the ANC classes. In a country where the average number of children per family is six, pregnancies are common. Traditionally, a woman carried her pregnancy and delivered in her village, helped by traditional birth attendants. Some deliveries were complicated, but mostly children were born healthy. HIV/ AIDS destroyed this possibility.

Then there are mothers pregnant with their second, third, fourth child, the PMTCT mothers. Sister Betty knows all their stories. The one abandoned by her husband. The one who was born HIV-positive and has been fighting against the virus all her life. The one with just a grandmother to take care of her. The one who does not want to tell her husband that she found out she is HIV positive.

Apart from ensuring babies are born HIV negative, the PMTCT program is an access point for HIV prevention and care. If they were not pregnant, many women and their partners would not go for HIV testing, nor learn about the possibilities for treatment.

In Uganda, with an HIV prevalence of 6.4%, a total number of 90,000 HIV positive women conceiving every year, and the likelihood of 20 to 45% that without intervention HIV is transmitted to the child, approximately 24,000 children would be born with HIV each year. This would mean a vicious cycle of transmission and life long treatment.

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Prevention

“The surprising result of the early months of PMTCT implementation in northern Uganda was that the HIV test acceptance rate was very high. Data show that 95% of women from the Ante-Natal Clinics accepted to take the test to know their own serostatus” Massimo Zucca, AVSI program manager, recalls. If you consider that the stigma towards people with AIDS was still alive and strong in the 2000s, an almost complete acceptance of the HIV test was a powerful sign of trust in those who actually provided it. “AVSI’s concern was that the hospital staff, from the obstetricians to the counsellors (those who provide informational and psychological support to the people who decide to take the test), should be very competent”, Mr Zucca continues, “and it doesn’t mean just in terms of knowledge of the subject, in the respect of the local tradition, but also focusing on their health”. The percentage of the mothers who accepted to know the result of the test was close to 100% as well. One of the factors behind this flattering result was undoubtedly the employment of rapid HIV tests, which allowed people to receive their result within 20 minutes. Changing ones mind about whether one wanted to know the results, living in fear about the result, and tiring and expensive journeys back to the hospital to receive ones’ results were not necessary.

93.3

%

MOTHERS ACCEPTING TO GET TESTED FOR HIV

90

%

NATIONAL TARGET FOR HIV TEST ACCEPTANCE

For the PMTCT to work, an efficient health care system is necessary: a fully functional Ante-Natal Clinic with a qualified staff, a laboratory with reagents and operating structures and a maternity ward able to efficiently handle deliveries. On the other hand, PMTCT allows to actually improve such a system. What is fundamental – aside from medications and medical equiment which AVSI always provided to its health centers – is the staffs’ preparation and dedication. For many years, though, the government has not been able to provide, train and adequately pay its staff. For this reason AVSI has always worked together with the government, especially in training, through the implementation of educational and refresher courses for nurses, laboratorians, obstetricians. “These courses provide staff training and an incentive to actually stay in war areas such as northern Uganda, which is not a very popular destination for health personnel”. Between 2002 and 2011, in the health centers supported by AVSI; 197,343 women received antenatal and HIV prevention services through the Ante-Natal Clinic. The uptake of HIV testing nationally in women attending antenatal clinics was 80 percent in 2006.19 The counseling and testing target of the national PMTCT program was 90% for 2010. In the AVSI PTMCT sites we see a higher percentage ranging from 90.7 to 99.7%, with an average of 93.9%. The counselors in the AVSI sites use the national counseling guidelines for HIV/AIDS in which information is provided on the mother-to-child transmission of the virus, the possibilities of medical treatment in pregnancy, interventions to reduce the risk of transmission, and the need for the mother and the child to be followed-up after delivery. 16

197

,343

MOTHERS RECEIVed HIV PREVENTION SERVICES IN THE health CENTERS SUPPORTED BY AVSI


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“Another factor that contributed to the success of the PMTCT program right from the start was the existence of a mothers support network” Dr. Chiara Pierotti, AVSI Kitgum’s Area Team Leader between 2005 and 2007, explains that during the conflict “the AVSI PMTCT program carried out weekly homebased care visits to the mothers included in the program. You would see obstetricians, enter villages in Kitgum district to meet mothers and support them through their pregnancy. I still remember the surprise on the young mothers’ faces when I visited their homes. That had never happened before, it made them feel special. On the other hand it made them become more aware of the fact that their disease was a serious issue, which deserved attention”.

ANC attendance in PMTCT sites supported by AVSI

25 000 20 000 15 000 10 000 5 000 0

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

ANC Attendance women ANC Attendance partners

CAPACITY BUILDING Capacity building for AVSI, does not only consist in increasing the technical knowledge of people, but aims to educate them in being responsible towards their work and their own communities, always with a view to sustainability. Inside the PMTCT program, AVSI, for ten years, in collaboration with the authorities of the districts in which it operates, has planned and organized training courses for health personnel involved in prevention activities. Between 2006 and 2011, 650 people have benefited from these training courses, as follows: • • • • • • • • • • • • •

PMTCT strategies (10 day) training for health workers. These trainings have always followed the national PMTCT guidelines, and involve district authority staff. Between 2006 and 2011 79 health workers were trained. HIV Rapid testing (5 day) training for health workers. Between 2006 and 2011 64 health workers were trained. HIV Counseling training for health workers following the national counseling guidelines for HIV/AIDS. Between 2006 and 2011 161 health workers were trained. Training in child counseling is a recently started activity in which 4 health wokers have been trained so far. Training in Infant and Young Child Feeding. Between 2006 and 2011 70 health workers were trained. Training of community counselors, peers, and other key persons at community level. Kick Start training for health workers and in-charges of new PMTCT sites. Between 2006 and 2011 45 health workers were trained. PMTCT Orientations (3 days – on the job) at lower level PMTCT sites (between 2006 and 2011 142 health workers were trained). Village Health Team members-VHTs (Traditional Birth Attendants) (between 2006 and 2011 207 TBAs were trained). Training Health workers on Ministry of Health Family Support Group Concepts and guidelines (5-day training). Between 2006 and 2011 85 facilitators were trained. Technical support through regular Support Supervision and On Job Mentoring exercises to the PMTCT sites, and support to intra-site coordination meetings. Following each change in the MoH PMTCT policy AVSI provided additional training, mentoring, and supervision of health workers. AVSI also provided equipment and supplies to enhance the performance of trained health workers.

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Blood ties Ocaya looks serious. But a grimace on his sister’s face is enough for his locked jaws to melt down in an excited smile. Tied as brother by blood. Even though different blood runs through Ocaya’s veins. They cheerfully play in the front yard, on a Sunday. Rema, the last-born, tries to participate in their games but as she runs after them she keeps falling over her own legs, which have just learned how to walk. She had wanted a pair of earrings, like her sister, two glittering crescent moons, which they proudly wear along with their swirling dresses coloured by red earth and dust, filled with the joy of playing without any concern.

dad. This way it’s all easier. When Ocaya began to get ill frequently, when he was still young, doctors at the hospital advised Mary and Basil to take an HIV test, both were positive. They had found the cause of little Ocaya’s sickness. “Now it would be better for you not to get pregnant anymore”, neighbors and colleagues at the market told Mary “so as not to transmit the virus to other children”. But you can’t stop maternity, especially in Africa. Especially in Uganda. As soon as she learned of her second pregnancy, Mary immediately turned to St. Joseph’s Hospital in Kitgum, where she registered in the PMTCT program. Gloria was born eight months later, healthy and happy. Then came Rema, and she is HIV negative, too. In five months Akena will be born, and Ocaya will have a little brother.

The same concern that Ocaya has when he has to remember to take his daily anti-retroviral medication, which reduces his viral load. He does that together with mom and

HIV prevalence in AVSI PMTCT sites 18% 16% 14% 12% 10% 8% 6% 4% 2% 0%

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

The HIV prevalence in the AVSI PMTCT sites is 6.4 for women, and 8.5 for partners. The national prevalence is 6.5, and 8.2 in the north. The variation in prevalence in the male partners tested, and perceived higher prevalence than the ANC women before 2009, can be attributed to the small number of men tested in the early years (e.g. n=296 in 2002 versus n=10,859 in 2011). From 2009 onwards a more stable prevalence, close to the female prevalence is seen. No data is available on discordant couples, as only health center cumulative data was collected during the program rather than person specific data.

HIV prevalence ANC women HIV prevalence ANC partners

Family Support Group (FSG) Since the beginning of AVSI support to the PMTCT program, AVSI encouraged families to gather and share experiences and exchange knowledge about HIV and PMTCT in their communities. As well AVSI provided psychosocial support at community level to HIV affected families. In 2006 the Ugandan Government included Family Support Groups as part of the PMTCT strategy. AVSI has partnered with community based organizations (CBOs) in Kitgum (Meeting Point Kitgum, and Children of the World Foundation) and Pader (Christian Counseling Fellowship) to conduct the Family Support Group activities. AVSI has also facilitated on job training for “expert clients” sometimes referred to as “peer mothers” to offer psychosocial support at homestead and health facility level. The peer mothers also support other clients at health facilities where there is understaffing and facilitate narrating personal testimonies. The program of Family Support Groups has impacted the ability to collect Dry Blood Spot samples from HIV exposed babies, as well as providing education to families regarding care of exposed and HIV positive infants. The Family Support Group programme has also illustrated the enhancement of male involvement (community sensitization, encouraged women to come with partners, FSG engagement). There has also been an increase in number of babies being tested and requests for services by PMTCT mothers. 19


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Grandmother Scovia She leaves her hut of mud and thatch. She wears her Gomesi, the traditional dress older women use on important occasions: weddings, baptisms, funerals. An embroidered belt with golden threads around her waist, the ever-present shoulder pads – a legacy of British colonial fashion from last century, which the elderly wear with pride, along with typical ultra-colored clothes.

Fiona has just turned 18 when she gets pregnant after meeting her partner, who is HIV-positive as well. She had heard about the PMTCT from her friends in the village, who had encouraged her to go to the hospital and register, since she had been abandoned and she was HIV-positive. Emanuel, her first son was given the name Rwotomiya, which means gift of God. Fiona starts to breastfeed him, but a breast infection soon stops her from continuining exclusive breastfeeding, due to the risk of transmission from the open wounds. AVSI, through the PMTCT program, provides powdered milk thus allowing her to keep feeding Emanuel who would not have an alternative source of nourishment otherwise, without running the risk to transmit the virus.

Scovia is 70 years old, a record for a country where the life expectancy is 52. It is not the elegant dress that she is wearing on an ordinary day that makes her proud. She is proud. Proud of taking care of a granddaugher living with HIV and two children. Proud to say that she loves the three, even if the community insists that she should get rid of them. She wants to take care of them, at least as long as she is strong enough to do so.

In 2010, when her partner has recently left for Sudan, Fiona finds out she’s pregnant for the second time. But this time the PMTCT obstetricians suggest her to start antiretroviral therapy. Fiona then delivers Angel Komagun, which means “lucky”. The HIV test shows that Angel, like his little brother, is HIV negative. The chain of transmission is broken. And the sons, unlike their mother, are free.

Fiona, 20 years old, found out she is HIV positive when she was an adolescent, at the time her parents die. The chain of transmission started. Grandmother Scovia immediately took care of her and welcomed her at her home.

breastfeeding The risk of HIV transmission through breastfeeding ranges from 14 to 29%.20 Breastfeeding versus formula feeding shows an increased risk of HIV transmission.21 Following these findings, the first PMTCT guidelines discouraged breastfeeding, and artificial feeding was encouraged. The Ministry of Health and other actors such as AVSI provided infant formula to HIV positive mothers in the early years of the PMTCT program. Social and cultural factors related to breastfeeding, non disclosure of HIV status of the women to relatives, and lack of clean water to mix the formula powder with, made implementation of this policy a challenge. The formula provided did not offer a cullturally acceptable, feasible, affordable, safe, and sustainable nutritional substitute for breast milk was not available.22 In 2006 the breastfeeding guidelines changed, and early breastfeeding was encouraged for a short period of 3 to 6 months to improve child survival. The 1999 guidelines added a prophylaxis component to the feeding, whereby infants receive daily nevirapine prophylaxis during the full breastfeeding period. With this prophylaxis, HIV+ mothers can breastfeed their children for a longer time without increasing the risk of infection. Mothers are now strongly recommended to exclusively breastfeeding until 6 months of age, and continue breastfeeding while introducing complementary feeds until 12 months of age. If mothers cannot provide sufficient animal milk at 12 months, they can continue to breastfeed until able.

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Susan and Patrick It was full moon the night that Patrick decided to walk 6 kilometers to Susan’s village. The moonshed blue light on the red earth road, made the distance to Susan feel shorter. Their love story began that night.

however, insisted so much. During the first ANC session, the midwives had encouraged all the mothers to attend the next session with their partners. Patrick is now in charge of the support group that carries out information sessions, theater shows and testimonies. On county level, he raises awareness on HIV/AIDS and services available amongst people of his agegroup. Without fear. “It is only by giving the example of those who are positively facing the disease that the whole community develops awareness on the fact that by looking into the disease and facing it that AIDS can finally be defeated, thanks to available and efficient services” Patrick explains.

Susan is carrying her first baby in her womb. Patrick is in his Sunday’s best. He is wearing a suit and tie for the antenatal class with Susan. They walk close, side by side, on the way to the hospital. Patrick has never been to the hospital. He heard that you can get tested for HIV at the hospital, without anyone knowing you tested. But he has never got sick. Susan,

The involvement of husbands in the first stage of pregnancy, delivery and breastfeeding is one of the key elements in PMTCT. AVSI has been working for a few years now for as many husbands as possible to be involved in this stage. In over 10 years of PMTCT, the number of husbands who go through the whole process together with their wives and accepted to get tested has risen from 296 in 2002 to 10,859 in 2011.

Percentage of men accessing HIV prevention services through PMTCT 100% 90% 80%

A surprising and encouraging figure: something entirely new for Africa. Male involvement has been a challenge in most African settings. Antenatal care and delivery have been the women’s domain for centuries. By involving men in maternal and child health, women can be supported to regularly attend ANC, have safe deliveries and access good follow up and treatment where necessary. Involved men can in their turn also promote a positive and proactive role towards health care and AIDS prevention to their peers in the communities.

70%

AVSI attributes the succes of high male involvement to its family and holistic approach, and especially the family support group interventions.

0%

The national PMTCT plan aimed at increasing the percentage of male partners to 25% by 2010. In the 2010-2015 PMTCT plan the aim is to reach 50% of the male partners of pregnant and lactating women with counseling, testing and receiving HIV results. In the AVSI PMTCT sites the percentage of male partners was 37.2% in 2008, steadily increasing to 66.6% in 2009, and 73.6% in 2011. The increasing male attendance can be attributed to higher social acceptation to go for HIV testing, successful male involvement through counseling and family support groups, specific sensitization for men, creating of male friendly spaces in ANC clinics, and couple counselling.

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60% 50% 40% 30% 20% 10% 2002

2008

2009

2011


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The pillars of northern Uganda

They call them the health pillars in northern Uganda. They are St Joseph’s Missionary Hospital in Kitgum, Dr. Ambrosoli Missionary Hospital in Kalongo and Lacor Hospital in Gulu, northern Uganda. These facilities, along with Kitgum Government Hospital, are benchmarks for health care in Acholiland, are key delivers of health care in the Acholi subregion, a region affected by a conflict which lasted for more than 20 years. Even during the highest peaks of insecurity, and admidst the displacement of almost 2 million people, the hospitals continued providing services. “Thanks to the help of AVSI23 which guaranteed the presence of medical personnel, medications, medical equipment, the population of northern Uganda always had access to primary health care services” John Makoha, AVSI Country Representative in Uganda, explains. Not only were basic health services guaranteed. PMCTC was launched and implemented during the most difficult years of the conflict. AVSI’s program shows that provision of PMTCT services is feasible in poor and conflict affected settings. It is a cost effective program, which should be seen not as a stand alone program, but a program which is part of health services for mothers and children.24, 25 Mobilization of resources for the prevention of mother to child transmission of HIV does not only benefit HIV positive mothers and their babies, but also improves provision of general maternal and child care services, and is a key component in larger primary HIV prevention programs. From January 2002 till October 2011 AVSI supported 30 different health facilities in its program in northern Uganda. The health facilities consisted of 27 health centers (1 Private Non For Profit, and 26 Public), and 3 hospitals (2 PNFP, 1 Public) in Kitgum, Lamwo, Pader, and Agago districts.

Provision of PMTCT supplies • • • • • • • •

“Buffer stock” supplied to all PMTCT sites of PMTCT prophylaxis as described in the national guidelines; antenatal Care drugs, such as folic acid, fansidar, cotrimoxazole; anti Retroviral Therapy was provided in selected sites before 2006. After 2006 ART has become freely available and is directly supplied by the government to the health facilities; equipment for maternity, ANC/PMTCT services has been provided to health facilities; laboratory reagents and test kits are provided to the various sites; disinfectants, gloves and other disposables are provided to improve hygiene and safe deliveries; powdered milk before 2006 when breastfeeding was discouraged; home based care kits for PMTCT mothers during community follow-ups.

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Number of health centers supported by AVSI in north Uganda (2002-2011) Hospital

Health center

Support to health services

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

Lamwo

Kitgum

Pader Agago

Gulu

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St Joseph’s Hospital Kitgum Luciana’s eyes shine: “When I think of St Joseph’s, the first thing that comes to my mind is the big tamarind tree near the medical ward, under which the patients have always waited for their turn for the visits, looking for a cool spot in the shade”. Dr. Bassani, who worked at St Joseph’s Hospital in Kitgum during the 1980s, remembers the hospital vividly. The hospital started under a tree. It initially functioned as a small clinic, in November 1925, following the actions of the Comboni Nuns. Per corpore et salutem animae salus was their motto: while we take care of our body, let us take care of our spirit, too. At the beginning it was operated almost to the letter. The nuns wanted every child and every adult, at the point of death, to be baptized. Never was a motto more appropriate for a facility such as St Joseph’s Hospital in Kitgum. This remote district in nothern Uganda, home to the Acholi ethnic group, has witnessed several atrocities over the past thirty “The efficiency of the hospital years. From the dictatorships of Obote and Amin to the civil war between the has got much to do with the Lord’s Resistance Army and the Government of Uganda, which resulted into displacement of 1.6 million persons, and abduction of an estimated 66,000 birth of a subject, of a person children and youth. As well the AIDS pandemic, killed over 900 thousand who takes responsibility for people and left 2 million orphans. Finally – to add insult to injury – another himself and channels it into enemy, the AIDS epidemic, hit Uganda killing more than 900 thousand specific professional skills” people and leaving two million orphans. An ongoing challenge, a race to development that gets constantly stopped, and overturned, by extraordinary Alberto Piatti events. Extraordinarily tragical. Something that has become almost normal AVSI Foundation Secretary-General for the Acholis. Death is part of everyday routine. People in Kitgum hardly cry for the passing of a loved one. Not because they don’t love him. Faith fortunately teaches hope. And this was very clear in the mind of the nuns who built St Joseph’s. The small clinic soon evolved into a health care center, thanks to the introduction of maternal services in 1938. The construction of the pediatric ward and the operating room was only the starting point for the growth of both the facility and the services that were offered, which allowed St Joseph’s to be promoted to the rank of hospital in 1960 on initiative of the Ugandan Ministry of Health. Today, St Joseph’s Hospital is one of the most efficient hospitals in northern Uganda, with 21 departments, 350 beds and a “client base” of about 50 thousand patients a year. Its management has been run by the Gulu Archdioceses since 1973. Since 2003, Dr. Lawrence Ojom, dedicated and tireless surgeon, is the hospital director. (drawn from the story of St Joseph’s Hospital, published by AVSI on Kitgum’s St Joseph’s Hospital’s 50th anniversary, available at www.avsi.org)

PMTCT started in May 2002 focusing on HIV testing and single dose Nevirapine for mothers and syrup for children. To date this has changed following guidelines from Uganda Ministry of Health. Based on the hospital records, there is very good uptake of the interventions and therefore improvement from 2002 to 2011. • • •

• •

The percentage of mothers attending ANC who where counseled and accepted HIV test increased from 95.5% in 2002 to 100% in 2011. The prevalence on HIV declined from 8.9% in 2002 to 5.3% in 2011. The proportion of others enrolled to the programme (single dose Nevirapine then or ART to date) increased from 50.7% in 2002 to 58.0% in 2011. Note that about 2% to 3% of mothers annually who attend ANC are enrolled on ART. Male involvement increased from 0% in 2002 to 1.4% in 2003 and 61.9% in 2011. All partners who reported in past four years accepted counseling and HIV testing. Testing of babies/children exposed increased in numbers from 43 in 2002 to 172 in 2011. The proportion who tested HIV positive declined from 8.2% in 2002 (testing at 18 months then) to 7.6% in 2011 (DBS/PCR testing).

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New ANC attendance in St Joseph’s Hospital Kitgum 2006 to 2011

Year

2006

2007

2008

2009

2010

2011

1,995

4,037

2,763

1,528

1,568

1,595

Pre Test Counseling

1,992 (99.8%)

4,037 (100%)

2,763 (100%)

1,528 (100%)

1,568 (100%)

1,595 (100%)

Accepted HIV Test

1,975 (99.1%)

4,034 (99.9%)

2,762 (99.9)

1,528 (100%)

1,568 (100%)

1,595 (100%)

194 (9.8%)

340 (8.4%)

257 (9.3%)

181 (11.8%)

173 (11.0%)

*81 (5.3%)

137 (70.6%)

254 (74.7%)

194 (75.5%)

127 (70.2%)

89 (51.4%)

65 (58.0%)

84

112

112

256

306

172

Babies Tested positive

98/8 (8.2%)

41/2 (8.2%)

16 (14.3%)

16 (6.3%)

6 (1.9%)

13 (7.6%)

Partners Counseled

47 (2.4%)

70 (2.4%)

634 (22.9%)

878 (57.5%)

875 (55.8%)

988 (61.9%)

46 (97.9%)

70 (97.9)

634 (100%)

878 (100%)

875 (100%)

988 (100%)

03 (6.5%)

11 (6.5%)

42 (6.6%)

82 (9.3%)

66 (7.5%)

82 (8.2%)

Total ANC – Hospital Clinic

HIV Positive

Enrolled for PMTCT

Babies Tested

Partners accepted HIV test

Partners HIV positive

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Cinderella Girl Patricia’s second name is Cinderella. The name is meant to bring luck: a life of sickness which is changed by a miraculous meeting. In this case, the fairy is Ketty, a woman from northern Uganda who has been taking care of the AIDS-affected people through her local NGO in the town of Kitgum for the past 20 years. Lives affected by the worst virus of the millenium.

thinks of using one at her house, too. The two ladies have known each other for five years, since Helen was expecting Patricia Cinderella, her first baby. It was upon Ketty’s advise that Helen, following her husband’s death, accepted to go to hospital to participate in the antenatal program. And after finding out her HIV status, she decided to participate in the PMTCT program: she started antiretroviral therapy, which continued after the baby was born, along with exclusive breastfeeding during the first 6 months.

Patricia has small eyes sparkling with expectation. Two tiny rows of white teeth, hidden by a shy smile. You can only get a glimpse of them in the darkness of her hut. She quietly listens to the two women who saved her life. They excitedly talk in Lwo, the language of northern Uganda, about the innovative cooking system that Helen, Patricia’s mother, has built in her kitchen. Ketty appreciates the ingeniousness and

Today, Patricia, 5 years old, can play, jump, go to school, and dream of prince charming. She does not have to worry about the virus that fate had put in her way. A fate that a miraculous meeting has overturned.

Deliveries in AVSI PMTCT sites

In total 77,791 of the 197,343 ANC women over the 10 years delivered in a health facility (48.2%). Of the women who delivered in a health facility, 5,056 were HIV positive (7.0%). Overall the trend remains stable, with a slight drop in deliveries in health centers in 2007. This can be attributed to the increase freedom of movement in the area since 2006, whereby women went back to their villages of origin, moving away from the internally displaced camps, and thereby – in most cases – further away from health services.

70% 60% 50% 40% 30% 20% 10% 0%

2004

2005

2006

2007

2008

2009

2010

2011

% of ANC women deliver in AVSI PMTCT sites % of HIV deliveries of all deliveries

HIV prevalence in children under 18 months in AVSI PMTCT sites

If an HIV+ pregnant woman does not receive prophylaxis, the chances she delivers an HIV+ baby are 1 out of 3. AVSI did not collect data for each mother/child couple over the years. However from the infants tested, AVSI found that on average only 6.8% were tested positive.

0.120 0.100 0.080 0.060 0.040 0.020 0.000

2004

2005

2006

2007

2008

2009

2010

2011

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Meeting Point It was July 1990. A flyer was put up on the wall of a small room in the pediatric ward of the Government Hospital in Kitgum, Uganda. “We are a group of friends deeply touched by AIDS. Our friendship helped us face this reality and discover a freedom and a joy inside of it that we had never experienced before. That is why we want to share this experience with everybody. If you want, you can meet us at our “Meeting Point” every Friday afternoon”.

at the time – but for a hug which could soothe the pain that disease and loneliness brought about. During the past 20 years, Meeting Point has met hundreds of persons living with HIV/AIDS, accompanied them when dying, so that they would not be alone, and then took care of the orphans they left behind. Today, Meeting Point supports them with antiretroviral treatment and prevention, so that the number of persons affected by the virus reduces. They daily visit pregnant women in their villages, encourage them to go to the health facilities, and support them overcome their fears and doubts. They talk about HIV prevention with youth. They are a real “Meeting Point”. Meeting Point has been AVSI’s partner since the onset of the AIDS pandemic.

It was the very first time someone talked (and wrote) about AIDS. It was the first time someone had finally come out. They started to come shyly: Tom first, who had a dying sister, then Lucy, near death herself. Then Wilson: they were all looking not for healing or cure – inexistent

“The stigma, at the beginning of the nineties, when the disease had just begun to spread, was a strong barrier”, tells Father Alfonso Poppi. A person with AIDS was looked upon with fear and kept at a discrete distance, due to ignorance about how the virus was transmitted. People still thought a handshake, sharing the same plate, a mosquito bite or a simple conversation was enough to get infected. It was relatively easy to see who was affected, from their extreme thinness. When I gave Elly a ride on my motor scooter through the streets of Kitgum, everyone’s eyes were not on the pale white man who was driving, but on the skeleton he was carrying behind him”, tells Father Poppi. “Elly often asked me if people hated him. I answered that the problem was that when faced with death, people are empty, they have nothing more to offer, because they have no explanation, no answer”. “To be able to stand up and face the death of another person, you have to first be able to stand up and face yours”, says Father Tiboni often. “And in that way you look for the meaning of your life. Otherwise you really remain speechless”. And yet, just the day that Father Poppi and Ketty decided it wasn’t worth waiting anymore in that small room in the hospital, Tom came to the door. His sister was living in a hut in Ayul, alone with four children. Her body had been reduced to skin and bones. She was in the terminal phase of AIDS. Her brother was the only one who had been trying to help her to the best of his ability the 4 years she’d been ill. But he had reached the point where he could no longer cope alone. The visit did not last long. Lucy had trouble breathing. She could not even lift up her eyes from the filthy mattress where she had been laying immobile for months. They simply kept her company. But in response to the question “Would you like us to come back?” two eyes opened widely, confirming the desire to see them again. “It was then that I understood that only through friendship eternal life becomes possible. And I stopped being afraid of sick people”, said Ketty. (from the book “Irene’s Eyes. Prevention, treatment and fighting AIDS: the first-hand experience of an Italian NGO”, edited by Rodolfo Casadei, Guerini e Associati, 2006)

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Peasant mothers Her hands dirty with earth, soil that gets under the nails and won’t go away. On her head, a basket full of local cassava roots, typical of northern Uganda. One hand holds the hoe, the other holds the baby girl she is carrying on her back. This is a “peasant mother”. Margaret and other PMTCT mothers created small groups based on the villages they live in. AVSI helps them with small micro credit activities. Since the conflict ended, people have returned to their villages of origin, and started cultivating their land again. Women usually take care of the fields.

Margaret’s group has been given the cassava seeds by AVSI. Four women share a field. The revenue will be used to buy food for their children. They find a way to become self reliant again, after years of dependency in the internally displaced camps. “Thanks to the revenues from the sale, I can buy the food my daughter needs, with the right nutritional intake”.

RAISING AWARENESS Ugandan communities have strong ties and provide room to share experiences, support one another in difficult situations, and celebrate good times together. Communities have been the target of AVSI’s awareness raising on HIV/AIDS. Through community mobilization and follow up pregnant women have been encouraged to visit a health facility and attend antenatal care. AVSI works with partner organisations, such as Meeting Point, to carry out community awareness raising. Activities include: • • • •

community sensitization via community dialogue and drama performances with partner community based organizations; production and utilization of IEC materials in local language for Health Facilities and the community; radio: spots and talk shows talk shows about HIV/AIDS and PMTCT involving health workers and live phone in questions from listeners; home Based Care (HBC) and follow up of PMTCT mothers and baby pairs through CBO partners, such as Meeting Point Kitgum.

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War and AIDS

“Data on 10 years of PMTCT in Uganda cannot be analyzed without taking due account of the social and political context in the early 2000s”, says Dr. Filippo Ciantia, AVSI Country Representative in Uganda for many years. The northern part of the country has suffered from the civil conflict between the Lord’s Resistance Army (LRA) and the Government of Uganda that lasted from 1986 to 2006. The conflict displaced an estimated 2 million people who were spread over northern Uganda and forced to move and live in internally displaced camps for years. An estimated 66,000 children and youth were abducted, more than 10,000 people were killed, and many thousands more mutilated during the conflict.26 While living in camps, the population had no access to land, and mainly depended on World Food Program assistance for nutritional needs. As well other needs had to be met by the UN and non governmental organizations. Related to the conflict and increased dependency, media often depicted a higher HIV prevalence in northern Uganda. While some studies confirm that conflict accelerates the spread of HIV, AVSI’s data shows that the prevalence rates in the conflict affected areas are similar to those in non conflict affected areas in Uganda. During the worst period of the conflict, HIV prevalence was 6.9% in AVSI sites in the north, which is not much higher than the 6.7% recorded in the western and central regions of Uganda, not affected by the conflict. AVSI data also showed that Internally Displaced Camps (IDP) had higher percentages of pregnant women pre-tested (89% versus 81%), tested (91% versus 85%) and post-tested (99% versus 93%) compared to those not living in camps. PMTCT coverage in 2005 was similar in conflict-affected (32%) and peaceful regions (31%). IDP children were also found to be at higher risk of malnutrition, but reduced risk of HIV-infection with higher HIV prevalence among children living in town than in those displaced (39% versus 20%). Conflict is conducive to a range of factors that increase the risk of infection with HIV (rape, displacement, poverty, sex commercialization, abuse and coercion), but this is not necessarily translated into higher prevalence rates. HIV seroprevalence declines in Uganda are increasingly attributed to changes in sexual behavior particularly a delay in sexual activity among the youth and a decrease in number of sexual partners among sexually active adults. Some evidence suggests that in addition to the prevention and care interventions commonly supported by National AIDS Control programs throughout the country, social cohesion facilitated HIV prevention strategies. One element of social cohesion, supported in study findings, is that in Uganda information about AIDS and about persons affected by AIDS is more likely to be transferred through personal communication networks, compared to other countries in Eastern and Southern Africa. Another important facilitating element in this process has been a high-level of government and civil society leadership, to openly communicate the facts about AIDS risk and prevention to the population.27

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Treatment. A cure for AIDS?

Of the women who were tested positive (10,903) in AVSI PMTCT sites in total 7,487 were started on prophylaxis for PTMCT, while 697 were started on ART (triple therapy). The graph shows the increase in the number of women starting on ART over the years. ART became freely available in Uganda in 2004, however stocks of sufficient supplies in remote conflict affected areas such as northern Uganda delayed till 2006. In 2011 the ART uptake increased to 30%, similar to the national proportion of HIV positive pregnant women receiving ART.28

Women started on prophylaxis and ART in AVSI PTMCT sites 100% 90% 80% 70% 60% 50% 40% 30% 20% 10% 0%

Note: Prophylaxis from 2002 to 2009 consisted of Nevirapine only or a combination of Combivir and Nevirapine, following the WHO and national guidelines. In 2010 prophylaxis consisted of AZT and a single dose Nevirapine or AZT/3TC and single dose Nevirapine, while in 2011 prophylaxis was either combinatioin ARVAZT+3TC+single dose Nevirapine, or a single dose Nevirapine only.

2002

2003

2004

2005

2006

2007

2008

2009

2010

2011

% of ANC positive women started on prophylaxis % of ANC positive women started on ART

“AIDS has no cure”. The writing in large font on Florence’s t-shirt catches the eye. “Actually this was true till a few years ago” corrects the counsellor at Meeting Point in Kitgum. “Just look at me: I was dying, and then the antiretroviral drugs saved my life”. Now she runs up and down the streets of Kitgum, from one block to another, visiting other patients under treatment to remind them to take their medicine. By looking at her you would never say that she is HIV-positive. “Introducing antiretroviral treatment is really saving many peoples’ lives”, explains Doctor Chiara, who works at the AIDS clinic of the missionary hospital in Kitgum. “We started in April 2005. Today there are over four hundred patients receiving treatment in the district. And they are doing much better.” “Actually these drugs do not eliminate the virus”, explains Giorgia. “They simply bring the viral load down to very low levels. Sometimes so low that transmission becomes rare”. But the important thing is to never let down your guard. The tempation is that once a person feels better, one stops taking his medication, or goes back to practising risky sexual behaviours, explains George William, lecturer at Makerere University “We forget that the virus is still in their blood. It’s what they call “the safety belt effect”: the sense of protection, instead of making you more careful, it makes you act less careful”. “You just have to educate them”, proposes Rose Busingye. “on the benefits of the medicine and the behaviour that people under treatment must in any case continue to maintain: also in their case abstinence, faithfulness to their partner and condom use as the last resort. So that someone else will not be forced to take drugs for the rest of their life”. Since June, 2004 the Ugandan government has introduced free antiretroviral drugs in its healthcare institutions. “But the greatest challenge is sustainability”, George William states decisively. “Today AIDS has almost become a chronic disease. And the only way to really stop it would be to introduce a vaccine. But there still isn’t one. In the meantime, we have to rely on individual responsibility. What is needed is to educate people to love themselves and their partner. So that both of them can look up at the sky, and like Elly, can see a reflection of their companion, and love them more than ever. (from the book “Irene’s Eyes. Prevention, treatment and fighting AIDS: the first-hand experience of an Italian NGO”, edited by Rodolfo Casadei, Guerini e Associati, 2006)

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Hoima

AVSI has not only supported PMTCT services in northern Uganda, but ran a similar program in Western Uganda, in Hoima district from 2001 till 2007. Here, there was a strong presence of AVSI staff, in hospitals and in the community. “Initially, for us from AVSI and the district officers in Hoima, the introduction of the PMTCT program was seen as a huge challenge”, says Gaetano Azzimonti, at the time the medical doctor responsible for AVSI AIDS programs in Hoima. “We thought that it was unsustainable, not from a point of view of human and economic resources, but more from a standpoint of adherence of patients to the program: we feared that they would not had the patience and the willingness to accept and adhere to a program so new and certainly not simple to implement. The reality, thankfully, instead, disregarded all these concerns. The patients understood that this program was for their own good from its onset: it was not palliative but effective. And this was shown by patients who adhered to the program, who changed, and felt better”. Hoima’s PMTCT program was implemented first at hospital level, and spread through outreaches in health centers into a larger program, supporting 61,043 women. AVSI provided staff to the hospital and health centers, laboratory supplies, rehabilitated health facilities, and supported PMTCT mothers and their families through follow-up visits and economical support. AVSI’s partner in Hoima was Meeting Point Hoima, who provided home based care and a nutritional support programme. “The strength of the PMTCT program is the comprehensive package, providing medical services together with other activities: assistance to families, support with micro-credit activities, support through meetings, support to children orphaned by AIDS. These activities, in addition to being useful for mothers, allows the PMTCT health staff to maintain contact with the mothers and follow them in adherence to the program”, continues Azzimonti. The organization was also involved in setting up a referral system involving health center staff, and community volunteers. In 2011 Meeting Point is still active and continues its collaboration with the existing hospital and health centers in the program, now fully managed by the Ministry of Health of Uganda.

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Indicators AVSI PMTCT program per year in Hoima district

Indicator Hoima district

2001

2002

2003

2004

2005

2006

2007

Total

ANC attendance

776

3,217

6,325

9,807

10,987

14,610

15,321

61,043

Pregnant women pre-test counseled

222

2,782

5,749

9,057

10,368

14,562

14,964

57,704

Pregnant women tested for HIV

206

1,242

4,617

8,095

10,028

13,865

14,099

52,152

13

93

274

583

617

618

675

2,873

Partners tested for HIV

N/A

N/A

N/A

N/A

N/A

1,041

1,322

2,363

Partners tested HIV+

N/A

N/A

N/A

N/A

N/A

48

76

124

6

39

119

349

417

473

421

1,824

Deliveries in health facilities

N/A

N/A

N/A

N/A

N/A

6,117

6,015

12,132

HIV + deliveries in health facilities

N/A

N/A

N/A

N/A

N/A

245

308

553

1

27

63

151

210

246

146

844

Children tested

N/A

N/A

N/A

N/A

N/A

113

316

429

Children tested HIV +

N/A

N/A

N/A

N/A

N/A

12

34

46

Pregnant women tested HIV+

Women received prophylaxis

Infants given NVP

Number of PMTCT sites supported by AVSI per year in Hoima district Hospital

2001

Health center

2002

2003

2004

47

2005

2006

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Future plans

AVSI Uganda plans to continue its PMTCT program in the northern region in the coming years, working towards achieving the millennium development goal on maternal and child health. Alongside continuing programmatic activities following the national PMTCT guidelines, and best practices such as investing in family support groups and community support, AVSI will also focus more on research and data collection to inform programs, and document best practices and lessons learned. In September 2011 AVSI started a new collaboration with the University of California San Francisco, and Makerere University John Hopkins University as a sub-grantee in a study on primary prevention of HIV/AIDS in Uganda. The 4 years and a half study is funded by the US National Institute of Health (NIH). The hypotheses are 1) extended repeat HIV testing and enhanced counseling (HTC) during late pregnancy and breastfeeding can increase and sustain risk reduction behaviors and prevent incident STI and HIV infections among HIV-uninfected pregnant women, and 2) that couple HTC can further enhance this effect through improved couple communication and emotional and economic support from male partners. The specific aims are: 1) to assess the effect of extended repeat HTEC and enhanced counseling on sexual risk behavior and STI and HIV acquisition in HIV-uninfected pregnant and lactating women presenting individually; 2) to assess the effect of extended repeat couple HTEC on sexual risk behavior and the incidence of STIs and HIV in uninfected pregnant and lactating women presenting with their partner, and; 3) to assess the costs and estimate the cost-effectiveness of the intervention. The study is a stratified randomized trial of 820 HIV-negative pregnant women and 410 male partners in Mulago Hospital in Kampala and in Kitgum Hospital in Kitgum: 205 women presenting individually and 205 women presenting with their partners in each site will be randomized to retesting in late pregnancy or delivery only or in late pregnancy and during breastfeeding. Follow-up will last until 24 months post-partum or 6 weeks after the end of breastfeeding, whichever comes first. Data will be collected on participants’ HIV and STI status, socio-demographics characteristics, risk behaviors and perceptions, as well as relational factors and reproductive history and intentions. As well data will be collected on the perceptions of study participants and providers on the challenges of retesting, partner’s involvement and primary HIV prevention. The intervention is designed in a way that the retesting and counseling schedules are integrated into the routine antenatal and post-natal MCH care calendar. The research team is led by Dr. Jaco Homsy, and includes researchers from the University of California San Francisco, Makerere University, John Hopkins University, and AVSI.

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Further more AVSI will continue to respond to the HIV/AIDS pandemic with a focus on risk avoidance, and integrating this approach in all its programs and sectors. HIV/AIDS programs are part of larger health system strengthening efforts in the country and region, to deliver quality health services to the population. They link to educational programs for children, youth, and adults, focused on respecting the rights and responsibilities of parents and families, helping children, youth, and adults to learn and practice moral values, helping them live in a responsible manner. Looking at the economic impact of the HIV/AIDS in Uganda, AVSI’s beneficiaries of food security and livelihood programs have since its inception included persons living with HIV/AIDS. AVSI will continue implementing programs focused on the most vulnerable, and work within the government’s policies and framework to achieve this (e.g. the policy on Gender, Gender Based Violence and HIV-AIDS mainstreaming in Food Security and Livelihoods, which was launched in 2011).

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Conclusions

In spite of all the efforts made in recent years for the improvement of health conditions for mothers and children in Uganda, and in spite of the great results that have been reached, much is still to be done. One million people still live with AIDS and just as many were orphaned by the disease. PMTCT is one of the prevention strategies in the fight against HIV/AIDS. Primary prevention is of great importance to stop the spread of the virus, for which to date no cure has been found. Treatment regimen improved, and an increasing number of persons living with HIV/AIDS have been able to access Anti Retroviral Treatment over the years. This treatment has not only benefited the persons living with HIV, but also their sexual partners and children, as consistent use of ART reduced the risk of transmission to sexual partners and infants. Western and Central Africa account for 25% of the total number of pregnant women and children infected with HIV. Uptake of PMTCT in HIV positive pregnant women in these regions has increased from 5% in 2005 to 23% in 2011. Despite these great steps forward, access to health care services and ART and PMTCT in many countries is still lagging behind.29 PMTCT has focused on HIV positive pregnant women tested at ANC. Efforts to prevent sero-conversion in HIV negative pregnant women, as chances of infection are much higher in pregnant than non pregnant women, is increasing, as well as the prevention of transmission in discordant couples. Long term strategies focused on behavioural change and primary prevention are key to achieve the goal of having an HIV free generation. In Uganda, but also various other countries in Western and Eastern Africa, challenges in delivering PMTCT services to the population are hampered by larger challenges in the health system. Human resources are scarce, and recruitment and retainment of qualified staff is the largest impediment to service delivery in northern Uganda at the moment. Currently only 53% of the health workers posts are filled in health centers and 79.3% in hospitals. Absenteeism is high with more than 25% of the staff not present at the health.30 Staff recruitment and retainment should be given more attention at district and national level, and include factors such as housing and fair wages for staff at health centers in remote areas. Training should be prioritized to improve the quality and continuation of care. Access to health services is affected by poor referral systems, and long distances to health facilities. In northern Uganda there is need to improve the referral system for PMTCT, community linkages and health facility linkages, as well as interdepartmental linkages from ANC to ART to EID. Resource mobilization for comprehensive community programmes that will encompass sensitizations, village health team referrals of mothers for ANC and PNC, and enhancement of health service seeking behavior, follow-ups of mothers and mother baby pairs counseling, adherence counseling and treatment can help bridge this gap. Due to inadequate community linkages and long distances to health facilities some mothers deliver in villages instead of the health facilities. Through this process PMTCT mothers and their infants do now receive the care of midwives trained in conducting safe deliveries, and the necessary treatment and testing after birth. Further investment in strengthening health service delivery at community level, and extending Family Support Group activities to all areas could help prevent this.

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The Government of Uganda has made a great effort in providing updated guidelines and supplies in its PMTCT program countrywide. However the frequent changes of the PMTCT policy guidelines require mentoring and close supervision of health workers for which resources should be made available at Local Government. Medical equipment and supplies often suffer delays in distribution, delivery, and stock out of PMTCT drugs. The supply chain can be improved through capacity building of the in-charges of health facilities to order supplies in time, and through bimonthly scheduled deliveries. This will help avoid shortages and disruptions in the treatment for those patients registered for ART. Poor Infrastructure (inadequate spaces for counseling, waiting rooms and furniture) and lack of equipment still remain a big challenge in quality service delivery. To improve the infrastructural situation simple equipment like BP monitoring machines can be purchased and distributed. As well larger ART sites could be provided and trained in the use of CD4 count machines. AVSI’s programs, including its PMTCT program, put the person at the center. Each person has a value, whether HIV positive or negative. A person living with HIV has the same longing for happiness, love, and justice that a person not affected by the virus has. Actually, for those suffering the desire for affection and search for the meaning of life if often more pronounced. “Every patient deserves our respect and our love” said Pope Benedict XVI. Sister Betty’s care for women attending ANC, the care offered by the Meeting Point volunteers, Patrick’s commitment in creating awareness about HIV/AIDS among his peers; all stories in this booklet show the person behind the disease. An approach that goes beyond medical care, and is feasible and effective. Prevention is key to respond to the AIDS pandemic, as no cure or vaccine is available. In Uganda only 36% of the youth have comprehensive knowledge of HIV/AIDS prevention. The youth does not just need information, but need to be educated on their value, and responsibility. Through working with them and standing by them in their search for identity and meaning of life, their health can be safeguarded. Community based organisations such as Meeting Point, are the right entree point to provide this support. In post-conflict settings, such as northern Uganda, focus on development and recovery needs to include the health sector, and delivery of PMTCT services. AVSI is currently focusing on bringing PMTCT services to the returned population, in collaboration with district health offices and other stakeholders. Community networks and groups such as the family support groups are key to establish and maintain the connection between families and health facilities. At an international level, interest and action of researchers and pharmaceutical industries are necessary to develop a vaccine to prevent further transmission of the virus, while improved treatment is required for persons living with HIV/AIDS. Research should not only focus on the medical aspects, but also understand the social impact and value of each individual in responding to the AIDS pandemic. Even if in crisis, international donors have to be called upon to continue their commitment to improve maternal and child care, and achieve the MDGs. National efforts should be strengthened through networking and sharing best practices and lessons learned. We conclude with Pope Benedict’s XVI’s call in Africae Munus: “Spare no efforts to reach results as soon as possible, for the love to the precious gift of life. May you find solutions and make treatments and medications accessible to all, considering the precarious situations!”.

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References

1. Serwadda, et al. (1985), Slim Disease: A New Disease in Uganda and its Association with HTLV-III Infection, Lancet 2(8460): 849-852. 2. UNAIDS (2010) Country report Uganda. 3. Ministry of Health Uganda (2002) AIDS Control programme, 2002. Kampala, Uganda. 4. Stoneburner R.L., Low-Beer D. (2004), Population level HIV declines and behavioral risk avoidance in Uganda, Science, 30; 304(5671): 714-8. 5. Ministry of Health Uganda (2002) STD/AIDS Control Program. Trends in HIV prevalence and sexual behaviour (1990-2000) in Uganda. Kampala, Uganda. 6. WHO /UNAIDS /UNICEF (2010), Towards universal access: Scaling up priority HIV/AIDS interventions in the health sector. 7. UNAIDS / Uganda AIDS Commission (2009) Country Report Uganda.

15. Ministry of Health Uganda (2011) Stock status report. 16. Ministry of Health Uganda (2010) New PMTCT Guidelines. A presentation by Dr. G. Esiru. 17. Government of Uganda (2008) UNGASS country progress report Uganda. 18. WHO /UNAIDS /UNICEF , (2010), Towards universal access: Scaling up priority HIV/AIDS interventions in the health sector. 19. Government of Uganda (2008) UNGASS country progress report Uganda. 20. Nduati R, John G, Mbori-Ngacha D, et al. (2000) Effect of breastfeeding and formula feeding on transmission of HIV -1: a randomized clinical trial. JAMA 283(9):1167. 21. Musoke, P. (2004) Recent advances in PMTCT. African Health Sciences, 4 (3): 144 – 145.

9. UNAIDS (2010) Report on the global AIDS epidemic.

22. Fowler M.G., Lampe M.A., Jamieson D.J., Kourtis, A.P., and Rogers, M.F. (2007) “Reducing the risk of mother-to-child human immunodeficiency virus transmission: past successes, current progress and challenges, and future directions”. Am J Obstet Gynecol 197(3 Suppl):S3-9.

10. UNAIDS / Uganda AIDS Commission (2009) Country Report Uganda.

23. AVSI supports St Joseph’s Hospital, Dr. Ambrosoli Hospital in Kalongo and Kitgum Government Hospital.

11. Connor E, Sperling R, Gelber R, et al. (1994) Reduction of maternal-infant transmission of Human immunodeficiency virus type 1 with zidovudine treatment, N Engl J Med. 331:1173; Shaffer N, Chachoowang R, Mock PA. (1999) Shortcourse zidovudine Thailand: a randomized controlled trial. Lancet, 353:773; Wiktor SZ, Ekipini E, Karon JM, et al. (1999) Shortcourse oral zidovudine for prevention of mothertochild transmission of HIV-1 in Abidjan, Cote d’Ivoire: a randomized trial. Lancet. 353:781.

24. Scotland G.S. et al (2003) A review of studies assessing the costs and consequences of interventions to reduce mother-to-child HIV transmission in sub-Saharan Africa, AIDS 17(17).

8. Government of Uganda (2008) UNGASS country progress report Uganda.

12. The Petra Team (2002), Efficacy of three shortcourse regimens of zidovudine and lamivudine in preventing early and late transmission of HIV-1 from mother to child in Tanzania, South Africa, and Uganda (Petra study): a randomised, double-blind, placebocontrolled trial, Lancet 6;359 (9313):1178-86. 13. Guay, LA, Musoke PH, Flemming T., et al (1999) Intrapartum and neonatal single-dose nevirapine compared with zidovudine for prevention of motherto-child-transmission of HIV-1 in Kampala, Uganda: HIVNET012 randomised trial. Lancet 354: 795-802. 14. Ministry of Health Uganda (2010) New PMTCT Guidelines. A presentation by Dr. G. Esiru.

25. Sweat M.D. et al. (20 August 2004), Costeffectiveness of nevirapine to prvent mother-to-child transmission in eight African countries, AIDS 18(12). 26. Annan, J., Blattman, C., K. Carlson, and Mazurana D. (2008). The State of Female Youth and in Northern Uganda: Findings from the Survey of War Affected Youth, Phase II. Kampala: AVSI / UNICEF Uganda. 27. Ciantia, F. (2004) HIV seroprevalence in Northern Uganda: the complex relationship between AIDS and conflict, Journal of medicine & the person, 2, 4. 28. Ministry of Health Uganda (2010) New PMTCT Guidelines. A presentation by Dr. G. Esiru. 29. AFRICA (2011) “UNICEF calls for more efforts to reduce mother-to-child HIV transmission”. Xinhua News Agency, 16th November 2011. 30. AVSI (2011) Survey in all 191 health facilities in the Acholi sub-region, Northern Uganda. Gulu, November 2011. 52


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Acronyms

AIDS ANC ART ARV AZT BP CBO DBS/PCR DFID DHO ECHO EID EU FSG HBC HIV HMIS HTC

IDP IEC LRA MCH MDGs MoH NGO NIH NVP PMTCT PNFP STI UN UNHCR VHT WFP WHO

Acquired Immune Deficiency Syndrome Ante Natal Clinic Anti retroviral treatment Antiretroviral Zidovudine (antiretroviral drug) Blood Pressure Community Based Organization Dried Blood Spots / Polymerase Chain Reaction Department for International Development District Health Office European Commission’s Humanitarian Aid Office Early Infant Diagnosis European Union Family Support Group Home Based Care Human Immunodeficiency Virus Hospital Management Information System HIV Testing and Counselling

Internally Displaced People Information Education Communication Lord’s Resistance Army Maternal and Child Health Millennium Development Goals Ministry of Health Non Governmental Organisation National Institutes of Health (US) Nevirapine Prevention of Mother to Child Transmission Private Not-for-Profit Sexually Transmitted Infection United Nations United Nations High Commissioner for Refugees Village Health Team World Food Program World Health Organization

Acknowledgements Thanks to all AVSI staff, hospitals and Health Center staff, Ministry of Health and District Health Officers, who have over the years contributed to AVSI’s PMTCT program. In particular our gratitude goes to Dr Lawrence Ojom, Dr Luciana Bassani, Dr Filippo Ciantia, Massimo Lowicki-Zucca, Dr Chiara Pierotti, Dr Gaetano Azzimonti, Dr Francesca Zanetto, Dr Fausto Fazzini, Sarah Kabasomi, Sayuni Meihaho, Muhammed Anule, Grace Apoko, Sharon Oyella, Giovanna Romagna, Angela St Jules, Betty Oweka Ojom, Ketty Opoka, Aremo Winnie, Marianna Lalam, Nickson Ocitti, and Santo Oyet Opio.

Contents by Valentina Frigerio and Femke Bannink Graphic layout and photos: blossoming.it This publication was produced thanks to the European Commission within the project

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AVSI in Uganda

AVSI Foundation AVSI is an international nongovernmental not for profit organization, founded in Italy in 1972. AVSI is a prominent provider of development and humanitarian assistance around the world and brings strong management and innovative strategies to programs in education, food security/livelihoods, health and nutrition, social protection, HIV/AIDS, emergency preparedness and response, and disaster risk reduction to achieve its mission: to create lasting, positive change in the lives of persons, families and communities following the teachings of the Catholic Social Doctrines. Active in 42 countries and in Uganda since 1984, AVSI is recognized for its capacity to mobilize communities, reach disadvantaged populations, and build bridges for effective communication among communities, local organizations and host country government authorities at all levels. From emergency relief to long-term development, AVSI has been working in Africa, Middle East, Latin America and Eastern Europe to improve the lives of communities and persons living in very difficult circumstances. AVSI has been active in Uganda since 1984, maintaining a constant presence in the northern regions even during periods of high insecurity. This history and relationship with local communities has allowed AVSI to establish well-equipped field offices, with experienced staff with in-depth knowledge of the area, the population and the local leadership. Currently AVSI Uganda employs 153 international (21) and national (132) staff. Throughout the years, donors such as CESAL, DFID, Dutch Government, EU, ECHO, the Elizabeth Glaser Foundation, Italian Cooperation, UNICEF, UNHCR, USAID, and private foundations have funded AVSI projects in the health, HIV/AIDS, nutrition, disability, education, water and sanitation, protection, and food security and livelihood sectors.

AVSI PROJECTS ON PMTCT IN UGANDA OVER THE YEARS •

AVSI, with NUMAT funds, has completed 3 projects “Prevention of Mother to Child Transmission of HIV/AIDS in Kitgum and Pader districts” in 2007/8, 2008/9 and 2009/10, and is currently implementing the 4th grant for 2011/12. AVSI with funds from the Italian Cooperation and UNICEF is supporting the DHO offices of Gulu, Amuru, Kitgum and Pader Districts with capacity building activities since 2006, and emphasizes HIV/AIDS activities including PMTCT in this program. The current UNICEF grant is running till February 2013. AVSI with UNICEF funds, has completed the projects “Prevention of Mother to Child Transmission of HIV in Kitgum and Pader districts” in 2008 and “Support to Comprehensive Prevention of Mother to Child Transmission of HIV (PMTCT) in Kitgum, Lamwo, Agago and Pader districts, northern Uganda” in 2009/2010.

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• •

AVSI with private funds from a Spanish donor (CESAL) completed the implementation of a 2 year program “Improvement of PMTCT services in Northern Uganda” in March 2010. This program was complemented by another PMTCT program funded by the same donor that started in April 2009 and ended in March 2011. AVSI with funds of the Dutch Government, implemented a 2 year program “Humanitarian Assistance and Early Recovery during the Return Process in Northern Uganda” from April 2008 till June 2010 with activities in the health, HIV/AIDS prevention, and education sectors. AVSI has been implementing similar programs with funds from the Dutch Government since 2004. AVSI has implemented a project co-funded under the European Commission’s budget line ex B7-6000. The project (January 2005 – November 2008) titled “Improved preventive and Curative Health Services for Vulnerable population in Acholiland”, strengthened staffing, management and training capacity of St. Joseph’s Hospital and Kalongo Hospital in Kitgum and Pader districts. The project “Improved Accessibility to Essential Health Services for AIDS Patients and their Families” was funded by the Italian Ministry of Foreign Affairs (October 2004 – September 2007). The project covered three countries in East Africa (Uganda, Rwanda and Burundi) and was implemented by a consortium of NGOs, with AVSI as lead agency. In Uganda, in the districts of Kampala, Hoima and Kitgum, the project provided support to training activities, to PMTCT sites (Hoima District) and capacity building for collaborating NGOs involved in OVCs care (Kitgum District). AVSI with the support of USAID/PEPFAR has implemented a 4 year project (Community Resilience and Dialogue 2002-2005) providing psycho-social and HIV/ AIDS services to the conflict affected population. Gucci Group Solidarity has funded the project “Nascere senza AIDS in Uganda”. Elizabeth Glaser Pediatric AIDS Foundation (“Strengthening Prevention of Mother to Child Transmission of HIV (PMTCT) Program in Hoima District”, 2003-2007).

AVSI links its PMTCT program to other project it implements such as the Italian Cooperation and UNICEF funded project on health system strengthening, in which AVSI is working with the offices of the DHO Kitgum, Lamwo, Pader and Agago to improve health service delivery through technical support to the District Health Office (DHO), rehabilitation and construction of health infrastructure, provision of medical equipment and furniture for health centers, and logistical and administrative support, in an attempt to address challenges facing the health workers on the ground during implementation. Monthly HMIS reporting in AVSI supported PMTCT sites is significantly better than in non supported sites, an internal AVSI evaluation showed early 2010. Further linkages with other AVSI programs, including income generation activities through the livelihoods sector and HIV & AIDS education in schools through the education department, are aimed to contribute to enhance knowledge and economic situation to those affected or infected by HIV & AIDS.

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