PAEDIATRIC AND ADOLESCENT CANCER
112 CANCER CONTROL 2014
It is essential that all these priorities are broken down into
a multi-annual action plan. Many cancers in children are good
candidates to be prioritized in all developing countries3
, as
the cure rate is now over 80% in high-income countries with
costs of care often much less than for most of cancers in
adults.
We have chosen to define and implement a programme
called: "Supporting early diagnosis, treatments and the
rehabilitation of children with retinoblastoma in sub-Saharan
African countries" based on the following assumption shared
by different authors4
: "with early diagnosis, rapid care by a
specialized team, treatment is simpler, less expensive, with
higher cure rates and with less after effects".
There are different reasons for this choice:
‰ Retinoblastoma is now the most easily curable tumour as
the 10-year cure rate is more than 95% of cases in highincome countries.5
This is obtained with a relatively low
cost resources but thanks to early diagnosis and easy
access to specialized teams. But, the cure rate is still low
(between 20% to 60%) in low-income countries.6 So
retinoblastoma seems to be a good candidate to
demonstrate that coordinated action is able to quickly
change the situation in low-income countries.
‰ In 2010, we had discussions with the French-African
paediatric oncology group (GFAOP). This organization
set up by Professor Jean Lemerle 10 years ago, has
supported the establishment and the operation of 13
pilot paediatric oncology units in 10 French-speaking
sub-Saharan African countries (www.gfaop.org). Through
GFAOP, common protocols were developed by
"committees". Retinoblastoma was discussed by the
"retinoblastoma committee" led by the Bamako team
from Mali (F Traoré and F Sylla). We had meetings in
France and in Bamako in 2010 and 2011.
‰ The Institut Curie is the reference centre in France for
retinoblastoma care and research with a specialized
multidisciplinary team (ophthalmologists, paediatric
oncologists, radiation oncologists, pathologists, imaging
specialists, geneticists, biologists, supportive care
specialists and researchers). Almost all the French
retinoblastoma cases (50 new cases per year) are
managed by Curie Hospital. Many research projects are
conducted through the Curie research centre.
‰ The Alliance Mondiale Contre le Cancer (AMCC), French
branch of the International Network for Cancer
Treatment and Reaserch (INCTR), is a small NGO
directed by Pierre Bey, who was a former director of the
Institut Curie Hospital, and decided in 2010 to make this
"retinoblastoma programme" one of its flagship projects.
‰ We also had the advantage through INCTR of benefitting
from the experience of Sidnei Epelman7 who developed a
successful retinoblastoma early detection campaign in
Brazil.
‰ Financial support for this programme came from the
Sanofi Espoir Foundation (www.fondation-sanofiespoir.com)
through the "My Child Matters" programme,
from Retinostop (a French NGO created by parents of
children with retinoblastoma, www.retinostop.org), from
the French Ministry of Health, from GFAOP and Lalla
Salma Foundation (for chemotherapy), from INCTR and
from the Institut Curie.
The existing situation of retinoblastoma in Mali was
known:8,9
‰ 55 cases were reported between 2005 and 2007 which
represented 33% of the 166 solid tumours seen during
this period (while retinoblastoma represented only 4.2%
of solid tumours in children in France).
‰ The median age at diagnosis was 4.2 years (versus 2 years
in France).
‰ 60% of cases with extra-ocular extension at diagnosis (0%
in France in the last five years).
‰ 30% of patients who did not receive the entire prescribed
treatment (versus 0% in France).
We observed many reasons for this situation that were
very close to the description given by T Eden10 of the main
obstacles to be overcome to improve care of children with
cancer in the developing world: poverty, other societal
priorities, lack of registration (retinoblastoma is probably
over-represented in Africa due to the under-estimation of
many other deep seated tumours), lack of awareness, lack of
access to diagnosis and treatment facilities, lack of trained
staff and infrastructure problems. For retinoblastoma in Mali,
we can also add cultural factors and the absence of access to
ocular prosthesis and to effective conservative treatments11
which are important reasons for parents to refuse
enucleation of the affected eye, particularly if the diagnosis is
made early.
We decided to develop the programme in Bamako because
some of the prerequisites were fulfilled:
‰ There were core skills available with a paediatric
oncology unit (in the paediatric department of Gabriel
Toure University Hospital, headed by Professor Boubacar
Togo) supported by GFAOP and an opthalmologic
institute (IOTA, Institute of Tropical Opthalmology for
Africa) close by.
‰ The doctors caring for children with retinoblastoma
(paediatric oncologist Dr Fousseyni Traore and