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PATA Newsletter Volume IV Issue 5

PATA embraces advocacy to improve HIV care

Contents:

1. The way forward with advocacy
2. UNICEF meeting highlight: The PEARL study
3. Progress report from CHU de Youpougon, Ivory Coast
4. New reading initiative for impoverished children at Tygerberg
5. PATA national coordinators' meeting update
6. Rustenburg HIV soccer event a big success
7. Expert Patient funding renewals

1. The way forward with advocacy

We spoke to Dr Paul Roux, a Cape Town paediatrician and founding member of PATA, about the newly formed Campaign to End Paediatric HIV/AIDS (CEPA), and the role of activism in combating the pandemic.

TeamPATA: What are the origins of the Campaign to End Paediatric HIV/AIDS (CEPA)?
Paul: The Global Aids Alliance (GAA), which is an international non-governmental organisation based in Washington, aims to mobilise a comprehensive, compassionate response to HIV. The GAA wants to address the epidemic's links to social justice issues such as poverty and gender inequality. They demand faster, bolder action and concrete results. With this in mind, the GAA has set up the advocacy project of CEPA. CEPA aims to increase the coverage of PMTCT and paediatric treatment to the globally agreed target of 80% and to ensure quality treatment services. They will start working in seven focus countries: Kenya, Uganda, Tanzania, Zambia, Ethiopia, Mozambique and Nigeria.

TeamPATA: What has happened so far?
Paul: In the past few weeks CEPA held a meeting in Nairobi, where partner organisations, including PATA, the African Network for the Care of Children with Aids (ANECCA) and the Pan African Treatment Access Movement (PATAM), could meet and learn more about the campaign and their role in it. This was followed by a UNICEF meeting where information was provided by different African government representatives. It was clear that none of the countries were on target to meet their Millennium Development Goals. Less than half the women requiring PMTCT were gaining access to it, only a small proportion of babies were being followed up and tested, and even less were getting ARV treatment. This abysmal failure seems to be due to a lack of political will in African countries, but no one at the UNICEF meeting was holding the governments accountable and very few practical solutions were offered. Advocacy of any sort was almost non-existent. Perhaps because funders often feel like guests in the African countries, they seemed almost embarrassed to call these governments to account. Existing NGOs are also not unified in their efforts to make the case for the children they care for. Ultimately these circumstances necessitate the CEPA initiative.

TeamPATA: What role will PATA play?
Paul: PATA's role in CEPA will be to support the actions of treatment advocacy groups in focus countries by providing eyes and ears on the ground, working in the clinics and providing witness accounts of bottlenecks and other challenges faced in achieving the common goal of eliminating paediatric AI

TeamPATA: Where and how would activism play a role in the fight against paediatric HIV/AIDS?
Paul: I understand activism as a means of helping others to achieve their rights. The difficulty in South Africa, for example, is that women often have no idea of their own or their children's entitlement to healthcare. In the field of HIV care we need to raise our patients' awareness of what their rights are and advocate to the authorities – at every level – on their behalf. There is often a disconnect between ordinary people who are suffering and the people who make decisions, and advocacy can be used to bridge this gap.

TeamPATA: Does this mean that PATA will be changing its approach?
Paul: PATA's main focus will still be to increase the quality of healthcare provided by clinics throughout the continent. But it is becoming increasingly clear that advocacy efforts have to be supported too. Therefore PATA will gather data on events happening at clinics, which can then be used as evidence by advocacy groups, such as PATAM which can formulate demands and take action.

TeamPATA: Can ordinary healthcare workers contribute towards advocacy?
Paul: The main job for any healthcare worker is to look after his or her patients and advocacy is just another way in which one can do that. If the advocacy work is taken forward, and improvements are made, both health care workers and their patients will benefit from better resources.

TeamPATA: Is CEPA's aim of eradicating paediatric AIDS attainable?
Paul: It is possible. But we should guard against it becoming yet another slogan that everyone gets excited about, but which gives the false impression that the work is done. In reality, the work has hardly started yet.

• The Campaign to End Paediatric Aids is looking for a CEPA Africa Director (Africa-based staff). Position Summary: The CEPA Africa Director will play a leadership role in the three-year Campaign to End Paediatric HIV/AIDS, with key responsibilities for ensuring effective coordination among a wide range of campaign partners in Africa. The successful candidate will have exceptional leadership, advocacy, coalition-building, and project management skills. The Africa Director will report to the CEPA Project Manager in Washington, DC, and supervise a small Africa-based campaign team. The position will be located in Africa, most likely in one of the campaign focus countries, and requires international travel, especially within Africa.

If you are interested in finding out more about this position, please visit the Global Aids Alliance website: www.globalaidsalliance.org/index.php/10.

2. UNICEF meeting highlight: The PEARL study

Paul Roux and Melanie Evans from PATA attended the UNICEF regional consultation on accelerating PMTCT and paediatric HIV care and treatment in Eastern and Southern Africa. UNICEF's PMTCT communiqué, titled 'Closing the Gaps', is available online and can be downloaded on the PATA website (www.teampata.org).

The highlight of the meeting was an excellent presentation by Jeff Stringer, a Zambian-based professor of obstetrics and gynaecology, on the PEARL (PMTCT Effectiveness in Africa: Research and Linkages to Care and Treatment) study. The study is a cord blood surveillance of 43 randomly selected sites providing PMTCT services in Zambia, Cote D'Ivoire, South Africa and Cameroon. The methodology and study results can be downloaded on www.pepfar.gov/documents/organization/118151.pdf.

The study pinpointed specific areas of breakdown in PMTCT and Jeff Stringer concluded that in order for PMTCT to work, each mother-infant pair must negotiate a complex cascade of events. Failures can occur along each step of this path and should be systematically targeted. He recommended that fixing the coverage problem would prevent as many infant HIV deaths as rolling out more effective regimens.

3. Positive moves made at CHU de Youpougon Hospital, Côte d'Ivoire

The CHU de Youpougon hospital in Abidjan, Côte d'Ivoire, has made great progress regarding their PMTCT programme, paediatric HIV nutrition and their Mother to Mother programme. This follows after they set themselves goals at last year's PATA forum in Rwanda.

With regards to PMTCT, all HIV positive mothers who have recently given birth are now accompanied by midwives and counsellors to paediatric consultations. Here they and their child are encouraged to have monthly follow ups at the hospital and to get tested at 6 weeks via PCR. This has helped the staff at the hospital to better monitor the child's health.

Mothers who were unable to have antenatal HIV tests are now given pre-test counselling and have access to rapid tests in the labour ward. This now ensures more mothers are given ART during labour, thus reducing mother to child transmission. Poor HIV positive mothers struggle to obtain formula feed, but an NGO called the ESTHER Foundation has stepped in to help and is providing milk. Since there are many poor mothers in the area, this is unfortunately still not enough.

Pending the appointment of a full-time nutritionist, some of the doctors and counsellors have now received more training in HIV nutrition and are filling in this role for the moment.

The new Mother to Mother programme has involved interested mothers on a voluntary basis whereby they are trained to provide advice to other HIV positive mothers. They make home visits to improve treatment adherence.

Some of the continuing challenges that the hospital face include problems with treatment adherence, particularly amongst younger patients, and late diagnosis of HIV in children.

4. New reading initiative for impoverished children at Tygerberg

Language capacity amongst poorer children may be up to 50% lower than that of other children at the age of 5. This has an impact later on too, when these children go to school.

Dr Helena Rabie, a paediatrician at Tygerberg hospital in Cape Town, wants to address this problem. She is involved in an effort to build a library in her community and to train poor parents to read to their children. Books can be used as adherence tools by clinics and small libraries can be installed in clinics to keep children busy while waiting to be seen to.

Dr Rabie is hoping to roll out some of her ideas to the PATA clinics. We'll keep you posted!

5. PATA national coordinators' meeting update

Representatives from nine Southern African countries (Angola, Botswana, Lesotho, Malawi, Namibia, South Africa, Swaziland, Zambia & Zimbabwe) met with PATA Southern Africa steering committee members on 28 and 29 May to workshop a vision for PATA in the Southern African region.

Participants were provided with an overview of PATA, particularly for the benefit of the Angolan and Swaziland representatives. Participants had the opportunity to voice what PATA means to them.

"There is experiential learning and discussion," said Gertrude Guveya, a Zimbabwean nurse with Mildmay International. "In PATA, people from all aspects HIV care share ideas, copy what others have done and tailor it to suit our own country. Through PATA, multidisciplinary care has been emphasized, as a child with HIV does not belong to the doctor or sister only, but to the whole team."

Edson Mwinjiwa, a clinical officer with Tisungane clinic in Malawi, said that he attended the PATA forum for the first time in 2008. "The trip to Rwinkwavu clinic showed us an example of a perfectly setup clinic, that was baby friendly and well organized. Seeing the children who looked so healthy, in comparison to our sick looking children, made us realize what is possible."

Representatives defined PATA's role in the region as sharing and equipping. It was decided that all decisions made should filter down to the clinic level, so that clinics could be ready, equipped and capacitated to have the right information to have good clinical practice. This can be done through PATA forums, the website, this newsletter and through continuous exchange programmes and mentorship.

Advocacy (activism) was also put on the agenda, because systematic advocacy can bring about change. The need for an academic task team was highlighted with a focus on utilising regional expertise.

6. Rustenburg HIV soccer event a big success

PATA forum attendee, Tebogo Tshengiwe, recently organised a HIV awareness event in Rustenburg, South Africa. Using soccer as the medium to encourage awareness of HIV, more than a hundred primary school pupils were involved.

A mini world cup was held and the kids were divided into countries. During the lunch break of the tournament, HIV counsellors gave a health talk to the children on HIV and AIDS. The event was a great success and even appeared on SABC news

Tebogo's trainers are now continuing the HIV awareness message with soccer sessions with more local primary schools as well as a juvenile correction facility.

7. Expert Patient funding renewals

The PATA expert patient programme has been extended to include 47 clinics and 200 expert patients. The amount per clinic has been increased from $200 per clinic per month to $260 per clinic per month. The next funding transfer will occur before the end of June to cover the cost of expert patients until the end of January 2010.

Prior to clinics receiving this funding, they need to complete and email the following to melanie@teampata.org (the deadline is 20 June 2009):

• Please write a letter on your clinic/ organisation's letterhead acknowledging that you have been accepted onto the expert patient programme, and stating that:
  a. You are aware of the increased $60 per month and that this increase should be used to cover any additional costs associated with monitoring the programme.
  b. You will return a signed receipt to One to One Children's Fund acknowledging the arrival of funds (for auditing purposes).
  c. You will report timeously on the progress of the expert patient programme.
• Please provide confirmation of your bank details, including: 1. Bank name, 2. Bank address, 3. Branch code, 4. Account name, 5. Branch name, 6. SWIFT/ IBAN code, 7. Account number, 8. Account currency
• On receipt of funds, for auditing purposes, all clinics need to provide a dated letter on their clinic letterhead, stating they can confirm the receipt of the transfer of funds of X amount for the PATA Expert Patient Programme. Furthermore, this letter must state that the clinic can confirm that these amounts have been applied in accordance with the agreement between PATA and the clinic for the period 1 July 2009 to 31 January 2010. This letter needs to be signed by the expert patient supervisor/ head of the clinic.
• Marion Stewart has been contracted by One to One Children's Fund to monitor and evaluate the PATA expert patient programme. Clinics may be asked to participate in a pilot evaluation of the programme. All input is most welcome, so any clinics that have recommendations for Marion are asked to email them to marionhomeatlast@gmail.com.

Contributors to this edition: Toast Coetzer, Hannah Hussey, James Millar, Melanie Evans, Paul Roux, Paulette Ama Yoboue and the CHU de Yopougon team & Virgile Mahoro.

P.O. Box 13657, Mowbray,
South Africa, 7705.
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© Published online from South Africa.