One Retinoblastoma World, Dublin 2016 – Day 2

90% of children with retinoblastoma live in developing countries, and survival in these countries varies widely.  Where advanced retinoblastoma programs have developed through twinning partnerships with developed countries, survival among children treated at those centres now ranges 70-90%.  In many countries however, specialist care is virtually non-existent, and survival in most of these countries barely reaches 10-30%.

Lorna Renner, director of the paediatric oncology program at Korle Bu Teaching Hospital in Accra, Ghana, chaired a session exploring care in developing countries.   After presenting the Ghanaian experience, she introduced perspectives from Russia, Mexico, Mali, Kenya and Jordan.

Tatiana UshaKova, paediatric oncologist at N.N. Blokhin Cancer Research Center, Moscow, discussed the emergence of retinoblastoma treatment in Moscow over the last 40 years, from basic provision to comprehensive centre and progress to collaborative research involving three institutions.  She noted the vital importance of multidisciplinary care and training at a central care site, collaboration with dedicated local charities and researchers around the world, in developing successful comprehensive retinoblastoma care.

Marco Ramirez, ophthalmologist and director of the retinoblastoma program at Hospital Infantil de Mexico Federico Gomez, Mexico City, explored the social and demographic factors affecting outcomes.  Mexico is home to one of the world’s wealthiest citizens, but 50% of the population still live on just $4 per day.  In some cities, up-to 90% of residents survive on $1.25 per day.

Even in a country with a rapidly growing economy, survival continues to be hampered by delayed diagnosis, inconsistent access to care and limitations of therapy when cancer is advanced at diagnosis, particularly among the most impoverished communities.  However, hope is rising in Mexico City as more children are cured each year, thanks to comprehensive care.  Introducing Tomas (retionblastomas), a soft toy with removable eye, has also helped children and their families adjust to living well with an artificial eye.

Jayne Kamau spoke about the development and integration of child life at Moi Teaching and Referral Hospital in Eldoret, Kenya, and the value of child life supports in caring for children with retinoblastoma.  Jayne is the first Certified Child Life Specialist to train and qualify in Africa, thanks to WE C Hope.

Laurence Desjardins of Curie Institut in Paris, described the experience of her team helping to develop retinoblastoma care within the My Child Matters twinning program.  Funded by the International Union of Cancer Control (UICC), the program builds up paediatric oncology care through twinning between Curie and five hospitals in Francophone Africa – Bamako (Mali), Lubumbashi (DR Congo), Abidjan (Ivory Coast), Dakar (Senegal) and Antananarivo (Madagascar).

The Curie team assist with training and capacity building of the local team (including provision of artificial eyes), provision of equipment, database development, family funding for travel and some treatment.  Only curable children are included in the program due to the very limited funds available.

Yacoub Yousef of King Hussein Cancer Center, Amman, reflected on the experience of establishing Jordan’s comprehensive retinoblastoma service, through twinning partnership with St Jude Children’s Research Hospital.  He shared the challenges of delivering quality care to Jordan’s children while also responding to the needs of many children from neighbouring countries, including refugees – a situation many centres encounter as their expertise develops in regions devoid of specialist care.

We considered the challenges and positive impacts for everyone of working with a developing program despite very limited resources, and the need for more support to extend provision of support and access to optimal care.