Research plays a crucial role in advancing HIV care, treatment and prevention. As doctors, we carry out research so that we can show it to the people who have the power to change things.
Back in 1990s there were no paediatric HIV clinics in Jamaica – and there was no research on paediatric HIV in the country. I realised that in order to draw attention to the plight of babies with HIV, with an aim to reducing the mortality rate, I needed to understand what was happening and document evidence.
In 1997 I embarked on a research project that took me to all 14 parishes, right across the island, to track HIV infections among children.
I drove all over the island and went to hospitals that admitted children with HIV and sat in their medical records office and collected information. It was all really very simple – but no one had done it before.
Based on the records, I found that 183 babies had been diagnosed with or exposed to HIV at birth over the five-year period from 1990 to 1996. I also found out that two thirds of the babies, more than 100, had defaulted from care – in other words their mothers had stopped bringing them to the clinic – although at that time we really had nothing to offer them in terms of HIV care. Of those babies, 50 had died. However, the health care system was unable to account for the more than 100 that had defaulted from care so the death toll could have been higher.
The paper that I published was the first paper published on hospitalised paediatric HIV patients in Jamaica. It gave a glimpse of how the virus was affecting this vulnerable population.
It was published in a journal that was readily accessible to politicians and members of the Ministry of Health.
The study highlighted the urgent need for intervention to reduce transmission of HIV from mother to child as well as the equally urgent need to establish standardised treatment protocol for HIV positive babies.
It was also a catalyst for action as it heralded the next step which was a leadership initiative by a group of four or five paediatricians which I was a part of.
The other doctors who were involved shared the same frustration and had the same passion to see the children survive.
We formed the Jamaica Paediatric Perinatal and Adolescents HIV/AIDS Group headed by Professor Celia Christie. The group now leads about eleven paediatric HIV clinics across the island, which were initially launched as outreach clinics in 2003 but are now stand alone clinics. We all still interact with each other as a group and share experiences and best practices. The success of that model, based on research, resulted in an island-wide establishment of standardised care for mothers and their children.
By then, things had started to improve. In 2001, the Caribbean Community and Common Market (CARICOM) heads of government had declared AIDS a regional priority as the Caribbean was second to sub-Saharan Africa in HIV/AIDS prevalence. The Pan-Caribbean Partnership Against HIV/AIDS (PANCAP) was established within CARICOM to lead the regional response against AIDS and significant funds were raised internationally to support the region including grants from the European Union, World Bank and Global funds.
For me the lesson is that if you document what you find out then people will see it and be prompted to take action. But if you don’t write it up, no one will know. If you want something to change you have to put things in place to make that change happen.
When funders finally came to the Caribbean and Jamaica, we had information so the international community could say: “Here’s a problem that’s been highlighted. Let’s assist.”
When we carry out research, we see the outcomes – and that’s satisfying. I can follow all the published articles from 2002 to now and see how much progress has been made in paediatric HIV treatment and care. I see how much better HIV positive babies and children are doing as a result of it and it inspires me to continue to carry out research so that the children can get the best care and the best outcomes possible.
The group that started the change in HIV care in Jamaica had been educated in places where we had seen that better was available for our children and we said we want that for Jamaica. As a team we worked together to make it happen.
As told to Andrea Downer