Kalinga Nanayakkara's personal odyssey to cure the incurable
Photo credit: Authors own
Thalassaemia is a hitherto incurable genetic disease, affecting red blood cells and genetically transmitted by two parents who are thalassaemia carriers but without symptoms. Children with thalassaemia major need lifelong blood transfusions monthly, from six months of life onwards, along with iron chelation almost daily to reduce the iron overload. Every year the Health Department spends Rs.1700 million on thalassaemia related medication alone. This is 7% of our national drug budget. Hitherto, there has been no known cure. Most die at a young age due to severe complications of iron overload affecting vital organs (the eldest living patient in Ampara is only 25 years and Batticaloa 20 years!). There are over 2500 thalassaemia major children and 500,000 thalassaemia carriers in Sri Lanka. Most are not aware of their carrier status.
The main cure available today for thalassaemia is bone marrow transplantation (BMT) from a compatible donor (usually a matching sibling), popularized in the 1980′s by Professor Guido Lucarelli, Director Mediterranean Institute of Haematology, Rome, Italy.
I travelled to Rome in 2012, met Professor Lucarelli, this pioneer in BMT treatment, who counselled and encouraged me about the use of BMT in finally curing thalassaemia in Sri Lanka. On our return, we formed an organization called the “Lanka Thalassaemia Circle” made up of thalassaemia patients, their parents and well-wishers, with the express aim of fighting for their hitherto neglected rights and for a definitive treatment for thalassaemia. This organisation is affiliated to the Thalassaemia International Federation and has a membership of over 2000 thalassaemics and their families. I am its Patron. Our organisation has sent over 1000 ‘cheek swabs’ to the Histogenetics Laboratory in New York, from September 2013, from these thalassaemic children and their siblings to check for genetic compatibility.
With these compatible siblings we first established a BMT programme in 2014 at the Asiri Central Hospital and Nawaloka Hospital, where currently around 40 children have been completely cured of their thalassaemia. However as the cost of a BMT in the private sector exceeds Rs. 4.2 million each, which is beyond the means of most parents, my colleague Professor Harendra de Silva and I met the Minister of Health in 2016, to discuss the possibility of establishing a non-fee-levying government BMT Centre. Following the visit of His Holiness Pope Francis to Sri Lanka in 2015, I was fortunate to become acquainted with Archbishop Pierre Nguyen Van Tot, the Vatican Ambassador to Sri Lanka who arranged for help and training for some of us with the clinicians of the ‘Bambino Gesu’ hospital in the Vatican, which has a large BMT Centre. At their request eight engineers & architects of the construction company the CECB, Director & Haematologist of Teaching Hospital Kandy and four members of the Lanka Thalassaemia Circle visited the large BMT Centre of the ‘Bambino Gesu’ hospital in April 2018, to familiarize ourselves with the building construction required for a BMT centre and BMT procedure.
As a result of the great resolve of the Lanka Thalassaemia Circle, the government approved a Rupees 856 Million, non-fee-levying, BMT Centre at the Teaching Hospital Kandy, and its construction began on 8 May 2017. This was approved by the Cabinet and funds allocated in budgets thereafter. The contract was awarded to the CECB and two storeys have already been completed. It is expected that construction of the BMT Centre will be completed by mid 2021 and I write to seek your blessings to make this Centre functional by late 2021