The UN Summit on Non-Communicable Diseases (NCDs) in September 2011 will be an important meeting and has the potential to compare in significance to the 2001 high level UN Summit on HIV/AIDS, which marked a crucial turning point in the treatment of that disease.
As happened in 2001 there is an emerging tension in 2010 between those who believe that such a meeting should concentrate on prevention, and those who believe that support and research into a cure for NCDs are also crucial. This is particularly so in regard to cancer, which is a major NCD affecting people in all areas of the world.
Already, one significant European leader has argued that prevention is cheaper than disease management and that it makes sense to prioritise and pursue such policies, particularly because of the pressures on government expenditure. A number of the signatories to this open letter are involved with the support of patients who have a so-called rare cancer, or a less common, or intransigent, cancer. These diseases have utterly dire prognoses; cause enormous stress to patients, families and caregivers; and, when taken together, amount to a large group of cancers which suffer from an unacceptable level of unmet medical need in many parts of the globe, especially in developing regions.
Very often the causes of these cancers are unknown, hence prevention is impossible. Therefore, for rare and less common cancers, the focus should be on increased research and support.
We therefore believe that it should be a major aim of the cancer input to the UN Summit on NCDs to ensure that the voices of those with unpreventable cancers are not ignored.
This is particularly so with regard to all paediatric cancers which, because of low incidence rates, are by definition categorised as rare. However, rarity does not reduce the devastating impact such a diagnosis has on both the individuals concerned and on the wider society in general.
The President of the United States said in September 2010: “…Cancer is still the leading cause of death by disease for young Americans between infancy and age 15.” He added: “Tragically, the causes of cancer in children are largely unknown” and indicated his support for a greater research effort.
While recognizing that for a few cancers prevention strategies are very relevant and admirable, we call on those associated with the 2011 UN Summit to ensure that – for people with rare and less common cancers – a greater effort is made for enhancing support and significantly increasing research.
The undersigned therefore request that rare and less common cancers are formally acknowledged in the proceedings of the UN Summit on Non-Communicable Diseases (NCDs) as requiring a greater focus of attention by the worldwide cancer community.
Signed by the cooperating organisations of the European Action Against Rare Cancers (EAARC):
- European Society for Medical Oncology (ESMO)
- European Organisation for Rare Diseases (Eurordis)
- European Cancer Patient Coalition (ECPC)
- European Organisation for Research and Treatment of Cancer (EORTC)
- Conticanet
- EuroBoNeT
- Association of European Cancer Leagues (ECL)
- Chronic Myeloid Leukaemia Support Group
- International Brain Tumour Alliance (IBTA)
- Orphanet
- Chronic Myeloid Leukaemia Advocates Network
- Fondazione IRCCS Istituto Nazionale dei Tumori
- European Institute of Oncology (IEO)
- European Society of Pathology (ESP)
- Novartis Oncology