Children with cancer deserve a chance to live – it’s a right

The UN Charter of The Rights of the Child states that children have a right to life, to treatment when ill, and to rehabilitation following illness. Some 80% of children with cancer in the world currently do not have access to adequate diagnosis or treatment. Rehabilitation needs to be improved everywhere.

The International Confederation of Childhood Cancer Parent Organizations (ICCCPO) has a mission to improve access to the best possible treatment and care for children regardless of where they live. ICCCPO was formed in 1994 and now comprises 64 member organizations representing 52 countries. ICCCPO works closely with other childhood cancer organizations, in particular, with the International Society of Paediatric Oncology (SIOP). It works with the INCTR on the Global Alliance initiative. ICCCPO also works with other charities that seek to improve conditions for children with cancer, for example, Cancer Research UK.

How does ICCCPO help its member organizations and set out to achieve its mission? Some examples:

Annual Conference: Each year ICCCPO holds an international conference, usually at the same time and place as SIOP’s meeting. This enables parents, survivors, support organizations and professionals to meet informally, to attend lectures and to take part in workshops. In September 2004, the conference will be in Oslo.

Twinning: There are now many examples of member organizations ‘twinning’ to provide development support. For example, a resource-rich organization may provide support for a resource-poor member, or a group with long experience with an issue may support another, to avoid “re-inventing the wheel.”

Therapeutic Alliance: ICCCPO has worked with SIOP in developing a number of guidelines for professionals, users and supporters to help provide holistic treatment and care.

International Childhood Cancer Day: this annual event on February 15 helps member organizations and its supporters to raise awareness and funds for use at a local level. In 2003, the event raised more than $300,000 to support work for children with cancer around the world.

Information: ICCCPO provides a range of information for its members using a number of channels. The respected Newsletter is published three times a year, an international library is based in Canada, and the ICCCPO website is increasingly a major source of data for those seeking information on childhood cancer.

Fundraising & Sponsorship: At one time ICCCPO depended largely on membership fees to support its work. It is currently developing a sponsorship portfolio that now makes it a net provider to its members. However, ICCCPO is not a grant-giving body.

Advocacy: Key issues that need to be addressed are:

• Improving diagnosis and access to treatment in resource-poor countries — every child deserves the chance to live.
• Improving support for survivors and their families — to prevent these families from being disadvantaged as a result of cancer.