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My Child Matters: Fighting against Childhood Cancer in Low and Middle-Income Countries

Author(s): Cary Adams1, Catherine Boniface2, Raul Ribeiro3
Affiliation(s): 1Union for International Cancer Control (UICC),Switzerland, 2Fondation Sanofi Espoir, France, 3St. Jude Children’s Research Hospital, USA
1st countries of focus: Honduras, Morocco, Paraguay, Philippines, Senegal, Thailand
Relevant to the conference theme: Non-communicable chronic diseases
Summary: The My Child Matters initiative was launched in 2005 when the Sanofi Espoir Foundation proposed to create an innovative partnership with the UICC (Union for International Cancer Control) for fighting against childhood cancer in low and mid-income countries where the paediatric oncology is still emerging. It has grown into one of the largest childhood cancer initiatives in terms of the number of countries involved. The programme enables local partners, hospitals and NGOs to benefit from financial support (€20,000 to €50,000 per project per year, following an annual evaluation of each project by the Steering Committee), advice from international paediatric oncology and public health experts, as well as the South/South pooling of project experiences. The Sanofi Espoir Foundation has contributed a total of € 4.400,000 towards the initiative since 2005.
What hallenges does your project address and why is it of importance?: Cancer causes immense suffering and is is the leading cause of death worldwide. While cancer in children represents only a small proportion of all cancers, it is nevertheless testifies to the largest difference in survival rates between industrialized and developing or emerging countries. Childhood cancers are mostly curable, provided they are treated early on. More than 160,000 children face this disease each year, and about 90,000 die from it. In industrialized countries, around 80% of children with cancer can be cured. Yet, this figure falls to 20% or even 10% in the world’s poorest countries, where it is hard to have access to information, early diagnosis, care and treatment.
How have you addressed these challenges? Do you see a solution?: My Child Matters is based on the concept that improvements to healthcare infrastructure, the training of qualified personnel, better public information and the involvement of local governments in more active public health policies are key drivers of improving childhood cancer survival in developing countries.

The programme’s main objectives are to:
  • generate actions on the ground that are as sustainable as possible, directly benefiting the country, including children and their families, and health professional partners
  • raise greater awareness in civil society and among policy makers to help reduce the access-to-healthcare gap between developed countries and developing countries where paediatric oncology is still emerging.
It also creates the opportunity to build momentum by bringing countries together around the same initiative against childhood cancer so that experiences and ideas can be actively shared.
My Child Matters has already provided support to 43 hospitals and NGOs in 26 countries to reduce inequalities between developed and resource-constrained countries through grass-roots projects in these six years. Today, 21 projects across 17 countries continue to benefit from this initiative to improve every link in the health chain: better information, education and prevention, improved training for qualified personnel, helping to ensure earlier diagnoses, fostering better access to care and better pain management, developing palliative care and encouraging better understanding of the social aspects of this disease both for children and their families.
How do you know whether you have made a difference?: Continued monitoring and planned annual reviews by the project’s mentors, experts and the steering committee with all local partners help to measure the programme’s impact on the community - the children, their families and health workers - and assess its leverage on the health policies of the countries concerned.

Extremely promising results have been obtained on the three continents: For example:

Latin America:

In Honduras, in an effort to reduce the number of patients dropping out of treatment, the support provided has made it possible to position satellite clinics much closer to patients. This reduces both time spent travelling to the care centre, and work absenteeism among parents. Following the opening of six satellite clinics, dropout rates fell from 40% to 10% between 2005 and 2010.
In Paraguay, where they face the same problem, a national network of professional support for childhood cancer has been formed (and declared of national interest) and a number of satellite clinics have been opened. Patient treatment dropouts have decreased from 20% to 0% in two years. The programme has expanded to include training projects by twinning with Spain and the United States, and a South/South pooling of expertise with Argentina and Bolivia.

Africa:

In Morocco, an interdisciplinary approach has been set up to fight pain in children, a still largely uncharted area. This integrated approach is based on awareness raising among children and parents, training for caregivers and appropriate treatment. Today, pain management has made significant progress and ‘anti-pain committees’ have been trained in several hospitals. This innovative experience has helped humanize care and will be shared with other countries.
In Senegal, the rehabilitation of the paediatric oncology unit, the prevention of nosocomial infections, the treatment of febrile neutropenia and pain, the introduction of appropriate protocols and better training of health professionals have all led to greater government and civil society commitment to the project. This has led to an overall improvement in the survival rate for cancer, with the survival rate for kidney cancer (the most frequent childrens’ cancer in the unit) rising from 46.7% in 2005 to 71% in 2010.

Asia:

In the Philippines, the support provided has helped improve early diagnosis of acute leukaemia and retinoblastoma by boosting the training of primary care physicians and paediatricians. In 2010, the first and only centre for the diagnosis and treatment of childhood cancer was opened, and is now deemed a reference centre by the health authorities. In 2011, the first computerised database of childhood cancer will be compiled with the support of My Child Matters.
In Thailand, advances have resulted in the recognition of the importance of palliative care and psychosocial support. The country will host a World Congress on palliative care for the first time in 2012.
Have you or the project mobilized others and if so, who, why and how?: Nearly five years after the initiative ‘ My child matters’ was launched, it continues to show that we can all work together to create new types of partnerships to meet health challenges that do not receive sufficient attention, such as childhood cancers in developing countries.

Estimating the size of the problem in the chosen countries, assessing the needs and resources, enhancing political commitment, initiating public education and advocacy activities, providing professional education including development of training materials, encouraging stakeholder participation, providing continued monitoring and evaluation, forming collaborative partnerships – by engaging multiple actors, interest groups and organizations made the success for many countries where grassroots foundations, other stakeholders, and ministry of health have been involved. Some projects have been considered as reference centers (the Phillipines, Paraguay, Senegal..)
The partners of the project are: St Jude Children's Research Hospital, USA; the International Confederation of Childhood Cancer Parent Organizations – ICCCPO; SIOP International Pediatric Oncology Society, The Netherlands; National Cancer Institute, USA; Childhood Cancer Foundation, USA; Groupe Franco-Africain d’Oncologie Pédiatrique, France; International Network for Cancer Treatment and Research, Belgium; Centre International de Recherche sur le Cancer, France.
When your donor funding runs out how will your idea continue to live?: Focusing on the most impactful projects , determining gaps among the projects, evaluating barriers for success, project evaluation have been introduced as well as reinforcing healthcare capacity building and networking among the projects by sharing best practices and lessons learned in low- and mid-income countries. Leveraging MCM projects and more widely the cause of quality childhood cancer care in the participating countries for gaining sustainability has begun. In specific cases, support to scaling up the initiatives from local projects to regional or national plans will be provided, in particular if achievable goals by country can be agreed upon in order to get a better access to care for poor families and make quality childhood cancer care become a national health priority. An important role will be played by the UICC and its member organizations through strong advocacy actions.

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