Caring for children with cancer in Tanzania:
Their Lives Matter!
Letter from Dr Trish Scanlan
My name is Trish Scanlan and I am an Irish paediatric oncologist. I have lived and worked in Dar es Salaam since it captured my heart during a short assessment visit as part of a masters’ programme in 2006. During that visit to the only cancer facility in the country – The Ocean Road Cancer Institute (ORCI) - serving a population of more than 40 million (50% of whom were children), I found a ward where children with cancer were left alone for hours, unsupervised and untreated because there was no money to pay nurses to work nightshifts; I found children dying from lack of medication, surgery, blood products or senior supervision; I found a long term cure rate of possibly 5-10%.
But despite what you might think it was not a hopeless place. The government had made a real effort to provide some cancer care services free to these patients. The staff was wonderfully kind and full of compassion. What they lacked in resources they made up in dedication. And they were competent. For the one condition (Burkitt’s Lymphoma) where chemotherapy was available free of charge the cure rates had jumped from 5 to 65% in 5 short years. For me, this was a place I could work. It’s hard to teach compassion but when that’s in abundance it is a smaller task to raise enough money to cure dying children.
The first priority on my arrival was to provide all the medications needed. Despite the best efforts of dedicated staff, and the government covering the costs of every other service in the hospital, medication remains vital and was scarce. Children who were diagnosed in 2006 had little hope of surviving with rates around 5-10 per cent compared with long-term cure rates of 85-90 per cent for children in Europe.
And so we found donors from all parts of the community to cover the costs of the first medication bills we mounted up. And as a result the children started to come – in 2006 less than 100 new children were seen at ORCI. In 2015 we estimate more than 500 new children will be treated. And so we created a new problem, a product of our success. Our 17-bedded ward started to overflow, bursting at the seams with critical children. Imagine sharing a bed with 3 other families. Now imagine your child barely able to walk, belly swollen, gasping for breath and sharing a small ward space with 75 other families living in similar fear for their children’s lives. This situation was untenable.
The next step we took was to add some fun and laughter to their lives. We now have a fully functioning school, and play therapy programme. We also started our dedicated charity to look after this service. In Tanzania it is called Tumaini la Maisha. In Europe we called it Their Lives Matter. Together they are TLM. TLM presides over regular visits from clown doctors, a daily bed programme for those children too sick to move, our newly built hostel, a nutrition programme with yummy fruit and nut smoothies and much more. And the result we get is joy: to see a child who arrives full of pain and fear start causing mischief or simply giggling uncontrollably. It’s the best feeling in the world to be part of that.
But the bigger issue was to find more space. And so we decided to move the entire service to the paediatric department at Muhimbili National Hospital MNH, the largest University Hospital in the country. The Ministry of health approved the move and the two hospitals, and a wonderful donor, Love-hope-strength facilitated it. And in April 2012 we opened our new ward, which we called Upendo – the KiSwahili word for love. Over night our programme was transformed. We had access to all services available in a busy modern hospital including CT/MRI, a 24-hour laboratory and on site colleagues from every specialty.
The results were visible almost instantly. Despite most families still arriving every day with heartbreaking stories of their struggles to access care, watching their children failing and the tumours growing, more and more were making it to our door. The spirit and bravery of the children and the dignity of their parents is what keeps all of us on the ward motivated. That, and the fact that often the treatment results are almost miraculous. I have often left the ward worried that a child will not make it through the night. I return to find the bed empty and my heart sinks. But when I ask what happened, why I wasn’t called? often the response is that they’re outside playing or gone to our little school! Chemotherapy can work within a few short hours. That’s how instant the impact can be when children get access to the medicine they need. Kids don’t want to be lying in bed. As soon as they’re able, they want to be up and about again. They are so brave.
Our service was further improved by the addition of a beautiful new hostel where the families who cannot travel between treatments can go safely and rest; and the opening of our custom built and very beautiful Rotary Children’s cancer ward.
Our work is supported by teams of experts from all over the world. Every single department from Crumlin children’s hospital in Dublin assist with our work. Operation Child Life have brought regular visiting surgical teams. It was obvious from all these visits that we needed to support the development of local experts. Which led to our most recent advancement to the programme: the completion of our first two years masters programme in paediatric haematology and oncology. This programme is based locally in Muhimbili University for Health and Allied Sciences and visiting experts from near and far came to train the candidates. This programme has given the local team the skills knowledge and confidence to take a leading role in the management of the children and the ward services in general. I am immensely proud of their professional development and commitment as a group. They will surely lead the programme in time to a level to compete with anywhere in the world.
But before we get to that point we have one final major hurdle to overcome, the biggest challenge of all: children still come too late and many simply do not come at all. While we predict that more than 3000 children develop cancer each year we are only seeing 500. To change this and access every child, our service needs to expand to all corners of the country.
I have no doubt that this too we will overcome. More and more donors and friends have seen the results of our combined efforts and believe in our programme – this is not a dream. It is a 5-year strategic plan. The inspiring and delightful children keep us focused. If I’m having a bad day it’s only because I haven’t spent enough time with the children. They lift your spirits and make it all worthwhile.
Survival rates for paediatric cancer cases in Tanzania have increased five fold in the last 8 years. While there is much still to be done this is an example of a hugely successful public, private, NGO partnership. Government vision, private support and charity efforts are all equally responsible for the success of this story.
Thank you for taking the time to learn about our work with these vulnerable children. If you might consider joining our team of donors and supporters we would love to hear from you. Maintaining the standards we have achieved and reaching higher and higher each year requires a constant source of funding and experts willing to work with us.
Dr Trish Scanlan
Muhimbili National Hospital
Dar es Salaam