Introduction
One of the remarkable success stories in cancer care has been the increase in the long-term survival of children with leukaemia and solid tumours from almost nil to 75-80% cure rates in high-income countries (HICs). Despite this success, survival rates for those in low-middle income countries (LMICs) have not followed suit and are at best between 10-30%, despite deaths from communicable diseases reducing significantly over the last 20 years.
Children and young adults (0-19 years) account for under 2% of all cancers, with an estimated 300,000 new cases each year. At least 50% of these could be cured using generic World Health Organization-recommended essential medicines, but at least 80,000 die unnecessarily without access to such therapy.
Methods of starting
In 2007 we created the World Child Cancer charity to see if we could make a difference in at least some LMICs. Based on the model pioneered by St Jude Hospital Memphis, World Child Cancer aimed to link established paediatric cancer units in HICs with developing units in LMICs to enhance treatment standards for children with cancer. For these partnerships to be successful and sustainable, each twinning partnership was locally led by the developing team in the resource-limited country.
Before we could implement the model, we first had to raise funds to organise programmes, recruit individuals and hospitals working in HICs who were dedicated to international development. Only then could we assess the needs of units in countries that had asked for our help.
Poverty
Despite the support of external financial assistance, only a small impact can be made when trying to overcome individual poverty. However, in the short- to medium-term, subsidies for medicines, travel costs and accommodation are part of our programmes.
In LMICs, 80% of families are living on $2 a day and are required to cover the full cost burden for most drugs. With the provision of individual financial support, we have been able to reduce treatment refusal and abandonment. As a long-term solution to encourage families to complete treatment, we advocate Governments to move towards Universal Health Coverage in the future. Sadly, this is unlikely to happen in most countries for some time yet.
Assistance to create parent support groups and local NGOs to aid other families is proving useful. As deaths from communicable diseases have significantly reduced in the countries in which we work the need for our help in supporting children with cancer is increasing.
Dealing with disasters
Natural and man-made disasters have occurred in some of our project countries and certainly create a huge challenge but we can only give extra support to the team there at the time by visiting, if possible, on a regular basis and keeping communication channels open. World Child Cancer has recently helped to fund a team to assess the unmet need for palliative care of
the Rohingya refugees camping in awful conditions at Cox’s Bazar
in Bangladesh.
Raising awareness
To raise public and professional awareness of cancer we have organised campaigns using national and regional media outlets. These have been repetitive and varied to make sure our messages are both heard and remembered. We focus on reducing delays in diagnosis in rural areas with families often seeking out ‘traditional healers’ who clearly cannot cure cancer, even if they sometimes relieve suffering. Working with healers has increased referrals in two countries.
Diagnostics
It has been necessary to support the training of haematologists and pathologists regarding diagnostics with a preference for delivering in-country training when possible. However, we have relocated some healthcare workers regionally, or sometimes further afield, but all personnel are returned to their country when fully equipped with their new expertise. Interestingly, our twinning partner for Malawi in Newcastle (UK) has created a remote electronic review system of tumour tissue slides for diagnostic confirmation.
Lack of supportive, palliative and curative care
It is not safe to treat patients for cancer unless the hospital has reliable access to effective antibiotics, good painkillers and blood products. During initial assessments, we review the unit’s supportive aspects and try to ensure that any deficit can be rectified. There are worries around the lack of access to worldwide essential medicines due to the inadequacies
in production.
Supplies of key drugs like actinomycin, L-asaparaginase and 6-mercaptopurine have been reported to us from nine LMICs. Accessibility to cancer drugs is also unreliable within LMICs as a result of irregular procurement and importation by each country’s regulatory system. The greatest worries relate to sub-optimal or even ‘fake’ medicines being branded as biosimilars, with cheap ‘so-called’ biosimilars being imported. World Child Cancer is working closely with the International Society of Paediatric Oncology (SIOP), Childhood Cancer International (CCI) and WHO to reduce these risks but it is an uphill struggle.
Treatment protocols
Over the last few decades oncologists in HICs have identified the essentials for treating childhood cancers. Not all units can manage the most intensive protocols but paediatricians working together have created the concept of Graduated Intensity Therapy appropriate to local circumstances and SIOP has now produced a series of guidelines for the most common tumours seen in LMICs, which we advise our colleagues to use. Volunteers for World Child Cancer are involved in most of these guidelines.
Training and retention of staff
Volunteer doctors, nurses, pharmacists, psychologists, hospital teachers and other professionals visit the developing unit to offer vital support by teaching, assisting and sharing their experiences and expertise in a two-way learning environment. This in-country training ensures retention of staff and motivates them to develop their own expertise.
Developing networks in-country
Although all our projects have started in a single centre (usually
in the capital) we are now promoting the development of shared care centres to give more families closer access to better treatment. The networks in-country then have a central ‘hub’ that children are referred to for further treatment. This reduces travelling distances for families and also raises further awareness about curative potential and reduced abandonment rates.
Programmes
World Child Cancer currently runs programmes in Malawi, Ghana, Cameroon, Bangladesh, Philippines, Myanmar, Mexico and a five-country collaboration in Africa for a common kidney tumour. In each, we have provided training, facility improvements, advice on treatment and holistic care. Importantly, the projects are owned by the hospitals
in the developing country, not by the charity. In the last three years alone over 12,000 children with cancer have accessed improved services and families have been financially supported for drug costs. We have recruited 11 hospitals in HICs and over 60 healthcare volunteer professionals to assist with the programmes.
Future action
There is still so much more to do within each programme. World Child Cancer wants to create countrywide support for families and their children by creating shared care networks. We want to ensure that no matter where children live, they can be offered the chance of a cure through early diagnosis and good supportive care, and that they are always offered symptom relief.
Through our partnerships with several pharmaceutical companies including Celgene, GlaxoSmithKline and Sandoz, we have been able to further develop our projects in developing countries around the world. Their funding is vital in ensuring we give more children with cancer the gift of growing up. For further information contact Kieran Sandhu, Kieran.sandhu@worldchildcancer.org
Professor Tim Eden, a UK childhood cancer specialist, was involved in the era when, learning from early successes and failures, doctors increased the expectation of survival for children with cancer in high-income countries from under 20% to 80%.
Tim was later instrumental in helping to set up World Child Cancer in 2007 to support children with cancer in the developing world and implemented a proven model of ‘twinning’ hospitals in high-income countries with those in developing countries to assist progress. Thousands of children’s lives have been changed by accessing such support.