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Highlights of progress made in ensuring blood health
View(s):- Prof. S.N. Wickramasinghe Oration looks at ‘Surviving Chronic Myeloid Leukaemia in Sri Lanka: Imagining the possible’
By Kumudini Hettiarachchi
It was all about that vital fluid which takes oxygen and nutrients to our body’s cells and carries away carbon dioxide and other waste products.
Blood and blood disorders were the focus, when the Sri Lanka College of Haematologists inaugurated its 25th Annual Academic Sessions, ‘Haem ICon 2024’ with the highlight on the evening of September 26 being the prestigious Prof. S.N. Wickramasinghe Oration.
On the theme of the sessions ‘Building Bridges: Bench to Bedside for Better Blood Health’, college President Prof. Chandima Kulathilake said that it encapsulates the collective aspiration to bridge the gap between laboratory diagnostics and clinical care, to ensure that advancements in research and diagnostics translate into tangible benefits for patients.
The head-table at the inauguration of Haem ICon 2024 (from right) college Joint Secretary Dr. Thamudika Pushpakumari; Orator Prof. Senani Williams; Guest of Honour and Vice Chancellor of the University of Sri Jayewardenepura, Senior Prof. Pathmalal Manage; college President Prof. Chandima Kulathilake; Chief Guest and Director General of Health Services, Dr. Asela Gunawardena; and college Joint Secretary Dr. Amila Amarasena
She appreciated the Health Ministry’s support in developing the molecular laboratory at the National Cancer Institute, Maharagama, which would begin functioning by the end of the year.
Pointing out that the bone marrow transplant unit at the Lady Ridgeway Hospital (LRH) for Children, Colombo, was in operation, she said that the hope was that the unit at the Kandy National Hospital would be up and running at the end of this year.
Dr. Asela Gunawardena
Detailing some of the achievements across the country, Prof. Kulathilake said they included 14 Haemophilia Centres serving around 1,300 registered patients; 25 Thalassemia Centres which conduct screening and diagnosis under the National Thalassaemia Prevention Programme; and 15 Haematology Day Units, offering cost-effective options for treatment including chemotherapy and immunotherapy.
The Prof. S.N. Wickramasinghe Oration on ‘Surviving Chronic Myeloid Leukaemia (CML) in Sri Lanka: Imagining the possible’ delivered by Prof. Senani Williams ranged from medical technicalities to poignant human interest case studies.
Explaining that CML is an uncommon type of cancer of the bone marrow – the spongy tissue inside bones where blood cells are made – which causes an uncontrolled division of white blood cells (fighters of infection), Prof. Williams said the result is the accumulation of large numbers of mature granulocytes and some immature cells, myelocytes, in the peripheral blood.
The worldwide annual incidence of CML is 1 to 2 cases per 100,000 persons. It accounts for 15-20% of all adult patients with leukaemia, with a slightly higher incidence among males. The male to female ratio is 1.3:1.
Prof. Chandima Kulathilake
Prof. Williams said that Sri Lanka’s CML burden as recorded by the American Society of Clinical Oncology Journal in September 2021, is low when compared to other countries. It is 0.2-0.4 with the death rate being 0.1-0.2.
Looking back, she said that a small clinic with basic tests such as full blood counts, blood pictures and bone marrows was begun at the Professorial Unit of the North Colombo Teaching Hospital, Ragama in 2005. On her return from overseas training in 2005, she was eager to start treating CML patients, but the US Food and Drug Administration (FDA) approved tyrosine kinase inihibitors were not available on site at the Ragama Hospital.
“Diagnosing young patients with CML and not being able to offer any form of treatment, led to much misery to me as well as the patient,” she said, reliving the trauma. The late Dr. Sarath Abeykoon had encouraged her to register with the Max Foundation, a leading global health non-profit organization.The foundation provided standard doses of a branded drug for her patients free of charge, the cost at the time being Rs. 300,000 per month per patient.
Prof. Senani Williams
“All my patients who were registered continued to receive the drug, even during the COVID-19 pandemic and continue to receive it today,” she said, explaining that for reasons unknown to her and many others in the medical profession, in 2009, a briefcommunication informed all consultants registered with the ‘Patient Assistance Programme’ that no new patients should be recruited. All registered patients, however, would be provided medication until death.
The emotion was tangible when Prof. Williams says that a “very dark period” followed, with patients driven from pillar to post to try to raise funds for this life-saving medication. The President’s Fund, with its arduous paperwork, helped a few who persevered. The others were treated with the age-old hydroxyurea. It was a year later that the generic of the branded drug was registered but cost almost Rs. 40,000 per month. This too was beyond reach of the average Sri Lankan.
“Fortunately, the Medical Supplies Division (MSD) was able to purchase some stocks and I was able to register my patients to receive the generic,” she said.
The data from the pre-2009 era when patients were registered with the brand and the post-2009 era when they got the generic tell their own sad tale – 10 of the 25 patients who were on the generic are deceased, while only 4 of the 31 patients on the brand are deceased. This is while 14 of 25 on the generic achieved complete molecular remission, while 11 of 15 on the brand achieved complete molecular remission.
Pointing out that even though literature claims that CML is a disease of the middle aged, Sri Lanka sees the genetic instability leading to this cancer in children as young as 7, 11 and 13, she says. Most patients are between 35-65 years but others are at both extremes.
The next is the tragic tale of a 26-year-old who had delivered her third baby in 2006 without any antenatal follow up in the hospital OPD. Her other two children were under four years of age. Following the delivery of her third, she was found to have a high white cell count and a massive splenomegaly (spleen enlargement). Her blood picture revealed a chronic phase of CML. She was enrolled with the Max Foundation to start the branded medication.
Abject poverty and a series of unfortunate accidents and incidents with childcare disrupted her therapy during the first crucial year, eventhough she received the best possible standard of care. However, she lived only to see her infant son reach his first birthday. A few months later, her disease transformed into an aggressive form of acute leukaemia and she succumbed.
“She was the first patient I lost to CML.I, for one, carry a cross. I look sadly at 3 pairs of little eyes that pop in and out of my clinic, to say hello. I feel incredibly guilty for not having driven their mother to stricter compliance so many years ago,” says Prof. Williams.
Later, maximizing compliance with regard to medication-taking had been spearheaded through a massive meeting of patients from many centres at the Tewatte Church, Ragama. A separate committee for the welfare of patients and their support has also been registered. A booklet has been published on the disease; a Twinning Programme introduced to enable newly-diagnosed patients to have a heart-to-heart chat with other patients; and a Database of Patients is in the pipeline.
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