“When I got pregnant and knew I was HIV positive, I was very much in need of trying to abort my child. But I came to the clinic and now I have accepted my status and am going strong. The last two tests for my baby have been HIV negative. That is what I am fighting for. It is a struggle and a long wait for that final day when I will know for certain.”
Christina is the mother of three month old Nancy. She gave birth to her daughter at the MSF-supported Health Centre in Madi Opei in northern Uganda. It’s a remote part of the country, the mountains of neighbouring Sudan looming on the horizon, with largely only solar energy and no running water. The region suffered greatly during the two decade long conflict between government forces and the rebels of the Lord’s Resistance Army.
Christina knew her own HIV status was positive before she discovered she was pregnant. Christina was in despair but when she came to the Madi Opei clinic, she was counselled and persuaded to enrol in the Prevention of Mother-to-Child Transmission (PMTCT) programme where she eventually delivered Nancy. Now she is waiting to see if her daughter has the HIV virus or not.
Persuasion, not obligation
In Uganda, transmission of HIV from mother to child is the third main source of new infections with HIV. Traditionally women have given birth at home which puts them often beyond the reach of antenatal services. That’s why enormous efforts have been put in to mobilising and educating pregnant women in rural communities to come into health clinics for antenatal care and delivery through outreach activities including visiting healthcare workers and radio talk shows. In this way, investigations into HIV status can be carried out early on in the pregnancy which in turn means interventions to reduce the risk of transmission of the virus can be more effective. At Madi Opei, these outreach activities and the reputation of the clinic have resulted in a dramatic rise in the numbers of pregnant women attending the antenatal clinics from all the surrounding areas. Some come from as far away as neighbouring Sudan – some twenty kilometres or more journey each way. When they arrive, women and partners if possible are counselled and offered HIV testing. Those who are found HIV positive are encouraged to then enrol immediately on the PMTCT programme as Jaspar Adotto, the nurse in charge of the enrolment programme explains.
“We try to persuade, we don’t force. Some don’t want to enrol before their partners are aware of their status...some partners are far away, like for instance in Sudan. Then women go ahead and enrol without them because they are looking so much into the futures of their unborn children.”
Slow test results are demotivating
On the first day of enrolment, the rapid test for HIV is carried out and if positive, the women also take a CD4 test which measures the strength of their immune system to see if they need to be put on to antiretroviral treatment right away. The test can’t be done at the clinic but specimens must be sent away to the local hospital in Kitgum. It can take up to two weeks for the results to come back. This means asking the women to come back for their checkups and to find out results – and this is one of the main challenges of the programme in a clinic with such a wide catchment area, when such big distances may have to be covered. If someone doesn’t follow up on their appointments, the outreach team will - if the woman has consented to follow-up - be sent out to find out why and to encourage the woman to attend.
Getting mothers to come early on in their pregnancy is also a major challenge as Edna Acayo, Senior Clinical Officer with the Ministry of Health explains.
“Most women don’t come in first trimester, most start coming at 24 weeks. They don’t want to come in earlier. If we could find out early if a woman is eligible for antiretroviral treatment it would really help us to at least reduce as far as possible the risk of transmission of the virus to their infants.”
Treatment for life for mothers
Right now, the clinic is awaiting official approval to switch to triple therapy - that’s treatment with a combination of three antiretroviral medicines - as recommended as an option in the 2009 new guidelines issued by WHO for PMTCT. This option would see triple therapy offered to all pregnant women with HIV from the fourteenth week of pregnancy.
Peter Ocwik, the Clinical Officers’ Supervisor working for MSF at the clinic sees enormous benefits:
“People here think they should give birth to lots of children. This means that they stop and start using antiretrovirals with each pregnancy, increasing the risk of developing resistance to the drugs. If mothers with HIV could be offered triple therapy for life then it would give a great suppression of the viral load and mean a big reduction in the transfer of the virus in the next pregnancy. We already see this happening in other parts of Uganda.”
The delivery of a child at the clinic is usually met with great joy but also much uncertainty over the HIV status of the child. Because of the lack of adequate paediatric tests, it’s not possible to rule out conclusively HIV infection in the child before 18 months of age. The mother is therefore asked to come back to clinic at six weeks, six months and then 18 months to test the child. The tests to establish HIV status are highly sophisticated molecular tests that cannot be done on site and mean mothers must wait for results. Peter Ocwik says it’s a very tough time for the mothers,
“The results of molecular tests take a long time as we have to send the specimens to Gulu or even the capital, Kampala. We haven’t had any results here now for over three months. Mothers keep coming back and back asking for the result for their children but you don’t have an answer so it’s quite embarrassing when these mothers are desperately in need of these results. We need quicker results for these tests.”
Stopping breastfeeding is a real struggle for new mothers
All the women know that at six months, they will be asked to stop breastfeeding in an effort to limit the transmission of the virus through breastmilk. It’s a huge decision. On the one hand, there’s the expense of feeding a child with food when breastmilk is free. On the other hand, the social pressure to continue breastfeeding is also immense – locally the norm is to breastfeed for two years. Catherine Atim is an adherence counsellor with MSF who has been working at the clinic for many years.
“Men around here believe that if a woman stops breastfeeding a child, she is abandoning the child and must have another boyfriend. It’s very hard…That’s why it’s important for a man to come to the clinic so they can discuss these things and take proper care of the baby together, hand in hand.”
So although the urge to protect their child is very strong, some find it impossible to stop breastfeeding. But many women don’t want to repeat an earlier mistake says Christine Langwen, the mother of two week old Angel.
“I have another child who is HIV positive and now I am very ready to stop breastfeeding this one. I know at six months hunger will not kill the baby but HIV will. I will stop so that I don’t have another HIV child in my family because that was before I learned my status.”
The women in this report were able to access the antenatal care and safe delivery with skilled care at the Madi Opei clinic. However there are many women in Kitgum district who do not have access to those services, including PMTCT. This with the lack of follow up after the delivery for both mother and newborn means that many young children are exposed to HIV and not diagnosed early enough. Without access to treatment, half of these babies infected with HIV will die before their second birthday.
MSF has been supporting the Ministry of Health with an HIV AIDS treatment programme in Madi Opei Health Centre since June 2007 In 2009, MSF started supporting the existing PMTCT programme at the centre. So far 128 HIV positive pregnant women have enrolled in the programme. Of 58 babies born to HIV positive mothers following the programme, 53 tested HIV negative at 18 months