Special Report for Paediatric Cancer Awareness Month
In March 2016, a routine check-up of what appeared to be a painful case of tendonitis in Ravi Sankar’s teen son’s shoulder resulted in a life changing diagnosis.
“Osteosarcoma or bone cancer was what they told us… I remember patting his leg on the drive home, telling him that everything would be ok, but my mind was racing a mile a minute. On top of having to work through the emotions, you have to also be the adult and think of the practical and financial side,” Ravi’s eyes turn glassy as he reflects upon his family’s ongoing ordeal.
“The initial days and weeks were the worst. Our orthopaedic surgeon had only seen one other case like this and he advised us to take our son to a specialist at a paediatric oncology centre abroad,” he explains.
“We visited two of the best facilities in North America. The first turned us away because my son was too old. The second agreed to see him but would not do so without an upfront payment of $250,000. Between that and the trauma of the diagnosis our family was reeling.”
“There is nothing more awful than seeing the helplessness on a parent’s face when they hear the word cancer,” remarks Paediatrician, Dr Clyde Cave. “Even though paediatric cancer treatment is fully subsidized by the Government, the costs associated with managing the illness are extremely high and place low-income families at the mercy of the social welfare system and the generosity of others.”
Paediatric cancer places a significant financial burden on the family. “Many parents of children with cancer are unemployed, single parents or end up becoming unemployed [due to the time needed to care for their child],” explains Dorothy Cooke-Johnson, President of the Barbados Cancer Society, in an interview with the media.
“They need funds for food, transport and medication – simple things like groceries, pyjamas and things which will make their child more comfortable,” says Dr Cooke-Johnson, as she describes the daily realities of the growing number of Caribbean families that are affected by paediatric cancer.
The Caribbean region ranks fifth worldwide for cancer incidence and fourth for mortality in the world. And Barbados, despite its small size, has the 28th highest age standardized cancer rate globally (WHO, 2012) and the second highest age standardized cancer rate in the Caribbean, after the Bahamas.
According to Barbados’ only locally based paediatric oncologist, Dr Cheryl Alexis, there were more than 40 cases of childhood cancer reported in Barbados between 2012 and 2016, with a rate of approximately 10 cases per year, which has remained relatively stable over the past few years. Approximately 25 per cent of paediatric cancer diagnoses are attributed to Acute Leukaemias, resulting in a 23 per cent mortality rate for Acute Lymphoblastic Leukemia, which is significantly lower than the Caribbean-wide rate, but is still somewhat higher than that recorded in highly developed nations.
Other types of childhood cancer that were recorded in Barbados during 2012-2016 include lymphoma, bone (osteosarcoma), brain and kidney tumours and acute myeloid leukaemia, which resulted in a 100 per cent mortality rate during this period.
Barbados spends about 7.5 per cent of its gross domestic product on health care, placing it at a rank of 64 globally. There are 6.2 hospital beds per 1,000 people (Census, 2012) and chemotherapy, radiotherapy, and community-based health-care are available to the majority of the population but the structural limitations associated with a poor economy, numbers of cases and inadequate resources makes paediatric cancer care particularly difficult.
According to Dr Alexis, more funds need to be directed to areas that can help reduce mortality. One of the most critical of these is in the area of medication. “For years, paediatric patients have faced an increasing number of shortages in chemotherapeutic agents,” she explains.
Due to the relatively low incidence of local cases, increased worldwide demand and a limited number of specialized manufacturers, Barbados has suffered from restricted bargaining power with suppliers, resulting in extended delivery periods, prohibitively expensive costs and less efficacious substitution. These shortages can and do have devastating impacts on children with cancer and must be prevented at all costs.
According to a recent article in the Journal of Oncology, “In addressing the problem of excessive drug costs, not only do smaller nations struggle with diminished budgets but the relatively low drug quantities required by their populations also significantly limits their bargaining power. Individual countries must therefore collaborate.” (Alleyne-Mike, April 2018). One wonders why Caribbean nations have never attempted to pool their cases to benefit from economies of scale and improve their bargaining power with the pharmaceutical companies.
Advocacy and education have also been lacking, both for parents and medical personnel. Due to low frequency, late presentation of telltale symptoms and limited awareness among parents and some healthcare providers, cases are sometimes misdiagnosed or diagnosed late.
In the global context, optimal health outcomes are experienced in children’s cancer centres, where treatment is managed by dedicated specialists. In countries with highly developed medical systems, medical experts, supported by teams of psychologists, nutritionists and social workers, are allocated to families as needed. Limitations in scale and local expertise have made this approach impossible locally.
Encouragingly, over the past few years, international support and collaboration have resulted in significant strides in the treatment and management of paediatric cancer.
A multi-year partnership with Sick Kids Hospital in Toronto, under the leadership of Barbadian, Dr Victor Blanchette, has proven to be extremely effective in narrowing some of the deficiencies of the local system. The Sick Kids-Caribbean Paediatric Cancer and Blood Disorders initiative has provided invaluable knowledge transfer and training and helped develop supportive services and telecare that have spanned across the islands of Barbados, Bahamas, Jamaica, St Lucia, St Vincent and the Grenadines and Trinidad and Tobago.
The programme has also played an instrumental role in the development of a cancer registry that Dr Alexis believes will be highly beneficial in addressing the problem of frequent drug shortages.
“As we obtain more knowledge of the epidemiology of paediatric cancer, we will be able to use predictive models to make informed decisions on what drugs to pre-order so that there are no delays in administering treatment to cancer patients,” explains Dr Alexis, who added that childhood cancer cases tend to be more aggressive than those in adults.
The Sick Kids programme is also providing much needed expertise to Barbados, having recently trained a local physician, Dr Chantelle Brown, in paediatric haematology and oncology and sponsored 27 nurses from five countries in the first post-basic haematology/oncology diploma program at the University of the West Indies School of Nursing. The initiative has also produced clinical care guidance documents and supportive guidance documents, all adapted for the local setting.
Despite these successes, it is important for Barbados to develop the local capacity needed to sustain the systems and measures put in place by the Sick Kids initiative once the period of collaboration ends. Human resources and procedural considerations cannot be overlooked in order to preserve the positive impacts of the programme.
According to the Journal of Haematology and Oncology, the number of children living with cancer is expected to increase by 30 per cent by 2020. This crisis cannot be addressed by lumping paediatric cancer together with adult cancer initiatives — strategies geared at improving incidence and mortality rates must be specific to children — these include early detection, primary prevention, diagnosis, treatment and palliative care – all of which are highly specialized.
September is Paediatric Cancer Awareness Month and, in honour of Ravi Sankar’s courageous son who is currently undergoing cancer treatment in Vienna, Events Unusual is hosting an End of Summer Equinox Party in the former Louis Vuitton store in Limegrove. The event takes place this Saturday September 15th at 10pm. Admission is $100 per person with all proceeds to be donated to the Barbados Cancer Society in support of paediatric cancer patients and their families.
Constrained public resources, competing health system priorities and the specialized needs of child cancer patients make them a particularly vulnerable group during difficult economic times. The Limegrove-Events Unusual End of Summer Equinox party provides an excellent opportunity for the community to provide their support to this worthy cause.
Daphne Ewing-Chow is a freelance writer and editor. She has a Master’s Degree in International Economic Policy from Columbia University and is passionate about issues surrounding regional development.