For Dr Robert Newton, who has been working in sub-Saharan Africa for 20 years, the decision to continue working on his new approach to treating eye tumours in Uganda was a moral one.
For the last three years Newton has been working at the UK Medical Research Council (MRC) Unit based at the Uganda Virus Research Institute in Entebbe, Uganda, on secondment from the University of York. Among other things, he has been heading up a team studying retinoblastoma, a childhood cancer of the back of the eye.
Cancer and Viruses
The MRC centre was set up in 1989 following a request from the Ugandan Government to the British Government to collaboratively research the newly-discovered AIDS virus, HIV. But what brings a cancer researcher to a center which studies viruses?
Newton tells me he was initially interested in finding out if retinoblastoma has an infectious cause. “I’ve always been interested in infections that caused cancer; globally about one in 5 cases are due to infections.
“Human papilloma virus (HPV), for example, is a well known cause of cervical cancers, and the hepatitis B virus is responsible for 50 per cent of the world’s liver cancer cases. Because HIV leads to progressive depletion of the immune system, infections are allowed to thrive, and those which cause cancer are therefore more likely to result in tumours.”
If a cancer is more commonly seen in HIV patients, its cause is probably an underlying infection. It was this that Newton was keen to explore: “I came to Africa – initially Rwanda, but also Uganda and South Africa – to study HIV-related cancers as a way of identifying cancers which may have an infectious cause.”
Curable in the UK
Newton did not find a viral cause for retinoblastoma – and such a thing probably doesn’t exist. However: “It very quickly became clear that almost all of our cases of children with this disease were dying.”
Newton and his team decided to set up a treatment program. “We instigated it simply because we felt the high mortality of retinoblastoma was unacceptable, for a tumour that would be completely curable in the UK.”
To tackle the high death rate of retinoblastoma sufferers in Uganda, Newton and his colleagues had to struggle with the limited access to medical care in Uganda.
In the West, retinoblastoma is screened in all newborns, and is often picked up in photographs: instead of the red-eye effect caused by a camera flash, the pupil of a child with retinoblastoma look white. Newton’s experience in Uganda has been a stark contrast.
“Here children are presenting very late, with enormous tumours … basically we took the program that would be used in Britain if any child ever presented that late, but they never do. The protocol had never actually been used.
“What we did was – very simply – introduce a program of chemotherapy … and the bottom line is that we’ve been spectacularly successful. Survival has improved by 40 per cent.”
Tackling the whole problem
But the team knew that a successful program would involve more than just a chemotherapy regime. Chemotherapy drugs are available in other parts of Africa, yet children still die of cancers. After the initial surgery, parents do not bring their child back for follow-ups. Families might have to travel from anywhere in the country, they are not provided food when they are in hospital, and treatment is often fairly expensive.
“It was always our intention to do more than just chemotherapy. You have to tackle the whole problem, and if one of your bigger problems is keeping parents and children in care, that’s actually an issue you can’t afford to avoid dealing with,” says Newton.
“We of course provide the chemotherapy. We give it very professionally by paramedicals, supported by doctors. Paramedicals are cheaper than doctors, and are able to do it. And we pay transport and food costs.” The programme also uses generic off-patent chemotherapy drugs to keep costs down.
Not just a money problem
Having tackled the financial costs, Newton’s team could now focus on convincing the parents that coming back to the center was necessary. They found a rather elegant solution: treating all the children together at once. “When the wards empty out for the weekend, we fill them with 30 children with retinoblastoma, 3 in a bed.
They all get their chemotherapy at the same time, and the huge advantage of treating them together is that parents of a child with a newly diagnosed very advanced tumour see the improvements in the children we have been treating for a while, when the tumour has almost disappeared. The parents basically support each other through the process, so our loss to follow-up is very low. We get very few children disappearing and not coming back.”
Newton’s research sets new standards for treatment of diseases like childhood cancer in developing countries. “Many of these cancers are curable, and it just seems tragic that children are presenting so late, healthcare services are so inadequate, and we cannot reliably cure them,” Newton tells me.
He gives the example of Burkitt’s lymphoma, a cancer which is rare in the UK, but is the most prominent childhood cancer in Uganda owing to its association with Malaria. Newton thinks it would be particularly amenable to their style of treatment. “I think the nature of the programme we’ve introduced, and particularly the kind of holistic approach that we’ve used to keep children in cancer care, could be used for children with other cancers.”
The programme is made possible by heavily subsidises. But in consultation with the economics department in York, the team found that when the life-years gained in saving the life of a child are factored in to a health-economic analysis, the programme is a very cost-effective one. That’s a message Newton is really keen to get across: “If you save the life of a child you gain a lot of life years.”
It is clear that Newton’s program has the potential to revolutionise treatment in resource-poor countries. But his own evaluation is quite simple: “I feel really remarkably privileged to be in a position to work here.”