Although Nigeria has recently introduced national health insurance, it unfortunately has not had a positive impact on the plight of children and their parents with Burkitt lymphoma because it does not cover cancer treatment. In the past year, at the Obafemi Awolowo University Teaching Hospitals Complex in Ile-Ife, we have treated many patients with Burkitt lymphoma thanks to the generous donations made to Global Giving for the INCTR project for the treatment of this cancer. The parents and children deeply appreciate the kindness and generosity of the donors because without this support, the majority of the families could not have afforded the costs of the treatment for this highly curable cancer.
The donations have had other positive impacts on the overall care of the children. An example is that we have been very successful in being able to monitor children after they have been discharged from the hospital so that we have excellent follow up on our patients. At times, parents, due to pressures to care for other children at home and to work to support their families, sometimes cannot ensure that their child can complete planned treatment. But, with funding, we are able to make home visits and verify that these children are indeed well. A good example of how we have been able to follow such children is the case of young OW, a 4 year old boy who came to us in April this year. He had bilateral jaw masses and his disease went away. After completing three cycles of treatment, his parents could not bring him back to the hospital for treatment. But, he is doing very well and is constantly monitored to ensure that his health remains good and that he shows no signs of return of his disease.
The collaboration in the treatment of Burkitt lymphoma between INCTR and Bugando Hospital in Northern Tanzania was initiated approximately 2 years ago, but already much has been achieved and the Hospitals Oncology Department in particular is grateful to INCTR for its assistance in the diagnosis and treatment of patients with Burkitt lymphoma (BL). Although BL does not, of course, account for all the oncology patients, the project has had a broad impact on many aspects of oncology in the hospital, since the basic principles of care can be applied to other cancers, and in the context of diagnosis, significant improvements have been made which, of course, mean that patients receive the most appropriate therapy for their disease. Also very important is the detection of cases and improving access to care. In this regard, we believe we detect all cases in the region, but we hope to undertake a more detailed examination of the fraction of all cases in the region that reach Bugando Hospital.
With respect to diagnosis, we feel that we are now able to diagnose accurately BL,DLCL,HD and other childhood cancers such as Wilms’ tumour, retinoblastoma and hepatoblastoma which can resemble BL clinically. We stage patients according to the size of the tumor and involved sites, based on clinical examination and ultrasound alone, since we do not have access to expensive CT and MRI scans. The INCTR treatment protocol for BL, which contains a considerable amount of information about toxicity and what needs to be done if there is a high degree of toxicity. This has greatly increased the discipline with which treatment is given, and the need to record response and toxicity has been invaluable in teaching the nurses and residents in both pediatric and adult oncology branches to adhere closely to the protocol treatment and to ensure that patients suffering toxic side effects are promptly treated. Wehave also learned the importance of communicating effectively with other departments and following up patients who have completed their treatment, either by mobile telephone or actual visits. Thus, our record keeping is nowmuch more accurate.
Because this collaboration has ensured a regular supply of chemotherapy drugs required to treat patients according to the protocol, we have been able to increase the number of patients treated, and even been able to treat other patients with the excess of drugs provided by INCTR. In all, a total 56 cases have been enrolled into the INCTR protocol. Five were not eligible only 3 deaths have been seen so far among these 56 patients. Two of these were due progressive tumor growth – i.e., patients had resistant disease.
Lastly, but most importantly, INCTR has taught staff to understand research methods, including the collection andstorage of data, quality assurance and overall project management.
We are planning to extend the knowledge gained from the conduct of the INCTR Project to the entire oncology department, and to ensure that the principles of care learned from its use are applied on a daily basis to oncologypatients. We also plan to continue to collaborate with INCTR and hopefully add other components such as public education and education of primary care physicians to ensure that patients are diagnosed as early as possible. This, as is the case with many other aspects of the INCTR protocol can be applied to all cancers, not just Burkitt lymphoma.
(Based on an interview with Ilong Gleasong, Oma’s father, by our Nurse in charge of the oncology and palliative care units, Claire Lalam. (these are not the true names of the patient and father)
Oma was a healthy boy aged 14 years, who attended school regularly. He was in primary 6 in December 2012 and appeared well and energetic at the beginning of the month. On the 15th of December, however, he developed fever, headache and intermittent abdominal pain which rapidly worsened as his abdomen became swollen and he became progressively weaker. Soon, he could not walk and was unable to eat. During this time he was taken to various health facilities where he was given repeated treatments for malaria and other common infections – such “empirical” treatment (treatment without a diagnosis) usually helps children with fevers, which are most often caused by malaria or another infection. However, Oma did not improve. In fact he continued to deteriorate. Eventually he went to APAC Hospital, where an ultrasound examination of the abdominal was performed. This identified a large mass (lump) in the abdomen, the most likely cause of which was felt to be cancer. Oma was therefore referred to Lacor hospital for further tests and potentially, treatment.
“When we arrived at Lacor hospital,” said Ilong, “Oma was very weak, malnourished and not even able to sit up.” He was also in a great deal of pain that was only partly controlled by morphine given every 4 hours. A biopsy (tissue sample) of the abdominal mass was performed, which the pathologist reviewed and diagnosed as Burkitt lymphoma.
Treatment was started promptly and Oma has already completed the 4th cycle of chemotherapy. “He has some vomiting on the day after the treatment,” says Ilong, but he improved very quickly once treatment was started. His abdominal swelling had disappeared just 1 week after the 1st dose of chemotherapy.”
Oma is already playing with other boys and girls. He is happy and seems very healthy again. He often thinks about going back to school, and sometimes misses his siblings at home, whom he has not seen since he came to Lacor. His home is far away and the family cannot afford to go home and come back for treatment every 2 weeks. The father is worried about financial issues since he lives by farming a small plot of land and has a young family of 6 children to feed, the eldest being Oma and the youngest just 2 years old. Ilong is, therefore, very grateful that he will not have to pay for the treatment.
Ilong and Oma have a general understanding of the illness and are both very pleased that he has done so well. They have expressed their gratitude to the hospital for saving his life. In turn, the hospital is grateful to all the people who have donated generously to GlobalGiving, without whose help they could not achieve this seemingly miraculous result.
At St Mary’s Hospital Lacor in Northern Uganda, which is part of INCTR’s Burkitt lymphoma project, drugs needed for the treatment of this cancer have been unavailable for some weeks, and key drugs have only recently become available again. The situation was so dire that children and their families who came to the hospital during the early autumn months were asked to travel to Kampala, Uganda to get much needed treatment there. Sadly, the families, many of whom live on less than two (sometimes less than one) dollars a day, could not afford the transportation costs, let alone the costs associated with staying in Kampala. Burkitt lymphoma grows very rapidly such that even if families could have embarked on the long journey from Gulu to Kampala, it was likely that some children would have died en route. Therefore, they chose to wait at St Mary’s Hospital in the hope that the drugs, ordered three months ago, would arrive. Consequently, new patients received only palliative care when they could have started specific therapy for their disease and, patients who already started treatment were unable to complete therapy. Some children died while waiting for the drugs and other families simply left the hospital after giving up all hope that the drugs would ever come.
This problem has arisen because of recent changes in the drug distribution system in Uganda, which has led to chemotherapy drugs not being stocked by many local suppliers of medicines, and markedly increased the time from ordering to receipt of drugs (all of which have to be imported), with no guarantee that the drugs will arrive when expected. Guaranteed purchasing of specific quantities of drugs from a single company and payments made in advance at regular intervals could alleviate this situation, although more funds will be needed to initiate a system of this kind. The team at St Mary’s Hospital is dedicated to finding a solution and is in daily contact with the drug suppliers. They are also working with the government to ensure that non-governmental hospitals such as St Mary’s can have better access to drugs. But, this will take time to work out. Having sufficient funds on hand to make the advance purchase of drugs for Burkitt lymphoma is essential if patients are not to arrive at the treatment center after an arduous journey only to find that they cannot be treated anyway. Your donations will be of enormous help to St Mary’s since they will enable the hospital to make the necessary advanced purchases to ensure that children with this highly curable cancer are given a chance to live.
It is encouraging to be able to report that some drugs have recently arrived at St Mary’s, and that progress has been made in developing an improved system of drug purchasing and delivery that should avoid a similar occurrence in the future. Children in other countries have continued to receive their treatment as planned, but it will be important to examine their purchasing strategies to avoid a similar occurrence.
In this holiday season, when the thoughts of many turn to those less fortunate than themselves, please consider making a donation to help and to give hope not only to the children at St Mary’s, but to those at the several other hospitals involved in INCTR’s project. And rest assured that we will explore what measures we can take to support our African colleagues who are doing all they can to permanently solve this problem. We sincerely thank all of you who have donated to the project this year – without your help, many more children with a potentially curable disease would have died.
In 2011, the Bugando Medical Centre in Mwanza, Tanzania located near Lake Victoria, began work on the INCTR project to help children in this region diagnosed with Burkitt lymphoma. Drugs needed to treat this cancer were made available through the project. Just having the necessary drugs on hand to treat this cancer alleviated a larger burden on our team of care-givers. Parents of the children treated for Burkitt lymphoma who initially thought that their children had an incurable disease could see the immediate results of treatment. And, these parents have encouraged other parents with children with Burkitt’s to have hope for cure.
Being able to provide free chemotherapy drugs is only one aspect of the project and more challenges are encountered by families- the major one being the cost of transportation to a specialized centre such as the Bugando Medical Centre. To reach the centre in the first place, but transportation costs are also needed to ensure that we continue to know that the children we have treated such as eight year old Imelda continue to do well after treatment.
We would like to thank the donors of this important project and hope that they will continue to support it so that we can bring the hope and promise of cure to more children afflicted by this cancer.
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