We consider every need, from understanding cancer warning signs and diagnosis, to accessibility of treatment, support throughout treatment, and continued follow-up.An average of $1,000 US dollars goes a long way toward providing a child and their family the holistic resources they need to not only be diagnosed and start treatment, but also to receive supportive care while treatment is in progress so they complete treatment and can return home.
PRIORITY 1: Ensure early care-seeking and understanding of childhood cancer
PRIORITY 2: Markedly improve the speed and accuracy of diagnosis
PRIORITY 3: Remove barriers to accessing and completing childhood cancer treatment
PRIORITY 4: Dispel the myth that childhood cancer is a death-sentence and nothing can be done
BLFA works collaboratively with our program partners to lower barriers to the vital steps necessary for successful treatment of childhood cancer in Africa.
With aggressive cancers like Burkitt’s Lymphoma (BL), in which a tumor can double in size within 24 to 48 hours, early and accurate diagnosis is critical, before patients become too sick to tolerate chemotherapy. There are two major problems affecting cancer diagnosis in the countries in which the BLFA operates:
Problem 1: Diagnostic Delay
There are not enough Pathologists in sub-Saharan Africa.
Problem 2: Inaccurate Diagnosis
Imagine having an incorrect cancer diagnosis and therefore being given an inappropriate treatment: the results could be devastating. Most pathology labs in sub-Saharan Africa lack the equipment or techniques required to most accurately diagnose the type and stage of cancer. In the fall of 2016, BLFA Board Members Dr. Suzanne McGoldrick and Dr. Steven Kussick collaborated on a retrospective study of 100 children at the Uganda Cancer Institute who were thought to have BL, and found that 20% of the diagnoses were inaccurate, confirming the need for greatly improved diagnostics. 3
Diagnostic Accuracy Significantly Improves 12-Month Survival Rate3
1 Metter DM, et al. JAMA Netw Open. 2019 May;2(50):e194337
2 Fleming K. ecancer 2019, 13:945
3 Stiggelbout, et al, 2018
In partnership with the Beckman Coulter Corporation, BLFA launched cancer diagnostic laboratories at the Uganda National Health Laboratory Service (UNHLS) in Kampala and the Moi Teaching and Referral Hospital (MTRH) in Eldoret. The centerpiece of each laboratory is a donated Beckman Coulter Cytoflex flow cytometer, a state-of-the-art, highly sophisticated instrument that greatly enhances the laboratories’ ability to render rapid and accurate diagnosis of leukemias and lymphomas. Prior to these lab launches, Dr. Kussick developed and validated a customized testing protocol based on refrigeration-independent Duraclone antibodies.
For more detailed information on this life-changing program, contact Dr.Steve Kussick
In Kampala, where the lab has operated for over a year, the impact has been astounding, reducing the time required for definitive diagnosis from WEEKS to HOURS, a critical prerequisite to improving survival of patients with BL and other aggressive cancers. This innovation clearly has the potential to help save the lives of many sick children.
The UNHLS Lab is embraced by both the Uganda Cancer Institute and Ugandan Government
Moi Teaching and Referral Hospital – Eldoret, Kenya
Patient and Family Education Program
Our program partners at the University of North Carolina’s Project Malawi, led by Dr. Kate Westmoreland, Assistant Professor, Pediatric Hematology-Oncology at UNC Children’s Research Institute, developed a creative, innovative, and motivating approach to raising awareness about childhood cancer signs and symptoms, diagnosis, treatment, and access to caregivers 24/7.
Music Video: The organization worked with a Malawi pop star, Lulu, to create a fun and engaging music video to educate people on the warning signs of cancer and encourage them to seek medical advice. View the video here. Cancer is Curable Music Video
Educational Videos: Six videos were created to teach caregivers and patients about cancer so they understand the nature of the disease and its treatability. The videos rotate on screens in the clinic so families have the opportunity to see each one throughout visits and treatment. They also have access to the videos via YouTube to share with family members and friends.
Video 1 – What is cancer
Video 2 – Diagnostic Testing
Video 3 – Cancer Treatment
Video 4 – Symptoms and Side Effects
Video 5 – When to Seek Care
Video 6 – Staying Healthy
24-hour access: Project Malawi has created a hotline for patients, community caregivers, and doctors to connect with the clinic for any need 24 hours a day, seven days a week.
Mobile Access: Project Malawi has provided mobile phones to families and care providers. The necessity to stay connected to the clinic is paramount to treatment completion and success. This also allows all patients to access the 24-hour hotline.
Mobile Money: University of North Carolina Malawi transfers needed funds via a mobile application. Many families do not have the cash to pay for the transportation to get to the clinic. A typical reimbursement when they arrive at the clinic still prohibits families from coming to the clinics. The mobile transfer allows them to have the transportation money upfront. This has been incredibly helpful for many families.
Group home for families of cancer patients in Tanzania
“Survival of children with endemic Burkitt’s lymphoma in a prospective clinical care project in Uganda”
[Pediatric Blood and Cancer, September 2019, Volume 66, Issue9]
“Cost Effectiveness of Treating Burkitt’s Lymphoma in Uganda”
[Cancer, Volume 125, Issue 11, June 1, 2019]
“Presentation and Outcomes of Childhood Cancer Patients at Uganda Cancer Institute”
[Global Pediatric Health, May 2019]
“Prospective study of Burkitt’s lymphoma treatment in adolescents and adults in Malawi”
[Blood Journal 2019 Feb 26; 3(4): 612–620]
“Pediatric Cancer in Northern Tanzania: Evaluation of Diagnosis, Treatment, and Outcomes”
[Journal of Global Oncology, v4, 2018]
“Accuracy of Burkitt’s Lymphoma Diagnosis in Constrained Pathology Settings: Importance to Epidemiology”
[Archives of Pathology and Laboratory Medicine, Volume 135, Issue 4, April 2011]