INCTR Working on the Ground at St Mary's Hospital
Burkitt lymphoma (BL) is one of the most common childhood cancers in equatorial Africa. BL is also one of the most aggressive cancers and is fatal if left untreated. However, it is highly curable with chemotherapy alone. Sadly, many children never reach specialized centers such as St Mary’s Hospital Lacor in Uganda or the Bugando Medical Center in Mwanza, Tanzania where treatment for this cancer is available. There are many complex reasons for this. Most of the families live in remote or rural regions that make travel to these hospitals difficult. For these families, the costs of transportation alone can use up the entire family income for a year. And, if they do seek medical help at district hospitals or clinics, often the personnel who see them do not recognize the signs of BL which results in delays in prompt referrals to these specialist hospitals. When they do arrive at the specialist hospitals, they often have such advanced disease their chances of survival are low. And, for those patients who have a chance for cure, they rarely have sufficient funds to cover the costs of diagnosis and treatment without becoming completely impoverished. Doctors generally only address their relationships with the patients who they treat and assume that intermittent unavailability of drugs and lack of social services are normal. For these reasons, INCTR – in collaboration with these two hospitals – decided to address the broader issues pertinent to the care of BL such as ensuring that children are referred for treatment as soon as possible. In the past few years, things have moved forward. Because of your donations to this project, funds are available to provide treatment free of charge to the children.
Alleviating the burden of the costs of treatment for the children and their families has enabled the staff to develop a comprehensive “model of care” for children with BL. By a model, we mean to say that all aspects of high quality treatment, including all of the issues mentioned above are being addressed. Efforts are on-going and include these examples:
- Education and training of the staff at the two specialist hospitals in order to improve the overall quality of care delivered, including nursing care
- Staff at district hospitals and clinics in the catchment areas of the specialist hospitals have been educated in the signs of BL and provided with referral guidelines for suspected cases
- These two efforts have been greatly aided by the development of training tools for both staff at the specialist hospitals and at the district hospitals and clinics
- Collaborations have been established with other local NGOs to provide services such as housing for patients and families in between treatment cycles, food, transportation to and from the hospitals, and home visits to ensure that the children are doing well after treatment
- For the first time, the survival rate of patients treated by the two specialist hospitals can be calculated and the assumption that cancer is incurable is being overcome
- The demonstration of high survival rates has greatly encouraged the health care providers and has even influenced younger doctors to train as oncologists whereas before oncology was viewed as end-of-life care
- Public awareness through community out-reach – via antenatal clinics, childhood vaccination clinics and by going directly into the communities themselves to educate the general public about the curability of this cancer has been markedly enhanced so that more people are informed. This has led to more patients being referred earlier
- Letting parents of children with BL participate in forums with the staff in order to have a voice in what can and needs to be done in order to ensure that the psychosocial care of children with this cancer or any other childhood cancer can be continuously improved.
INCTR became involved in the treatment of BL in 2004. To date, more than 800 children have been treated. Our project with Global Giving began in late 2010 and since that time, 350 children have benefited from your donations and have received the necessary chemotherapy drugs for their treatment. Results are excellent - given the resources in most of the hospitals. Overall, the cure rate is 62% for all centers combined, but at St Mary’s Hospital, it is over 70%.
With your continued support, more can be done to constantly improve the results of treatment for these children and ensure that no child is excluded because of poverty. Because of your support, a new mind-set into tackling the broader scope of the problem at the level of the community as well as the hospital level has evolved. Involving district hospitals and clinics, dealing with the many psychosocial issues the families face, and getting the public involved – even in the villages where the families come from - will only increase these children’s chances of cure and ensure that they live long, normal and happy lives. Thank you again!