Since endemic Burkitt Lymphoma (eBL) is 100% fatal without treatment, BLFA funding has been critical to the survival of all eBL patients treated by our partner organizations.
Starting in 2012, our first year of funding distribution, BLFA has significantly impacted eBL patient care in the Lake Victoria region of sub-Saharan Africa:
- In the Kisumu and Homa Bay areas of western Kenya, BLFA has contributed funds to all aspects of eBL care, including diagnosis, treatment and follow-up, through our partnership with the Kisumu-based OGRA Foundation
- In Kampala, Uganda, BLFA has contributed funds to all aspects of eBL care except chemotherapy purchasing (which the Ugandan government oversees), through our partnership with the Uganda Cancer Institute- Fred Hutch Cancer Centre (UCI-Hutch). We have just made a new $100,000 grant to the UCI-Hutch to support improving diagnosis and clinical staging of eBL. These can include such diagnostic tests as bone marrow biopsy, CT scan, and lumbar puncture, which, without funding, are prohibitively expensive for a family.
- In western Tanzania, BLFA funded the construction of a new clinic by the Shirati Health, Education and Development Foundation (SHED Foundation)
The cumulative results of our three-year commitment to eBL care in western Kenya and Kampala are summarized in the graph below.
Treatment is highly effective
There was an estimated 75% survival among patients who completed treatment (183 of 243 patients)
Completing Treatment is a Challenge
- About 20% of children diagnosed with eBL never begin treatment. They therefore needlessly die of this disease. The most common reasons are:
- Delayed or incorrect diagnosis that leads them to become too ill to tolerate chemotherapy
- Logistical issues that prevent a family from having the child treated.
- Only about 62% of children beginning treatment actually finish treatment. We believe that incomplete treatment is mainly the result of:
- Financial and/or logistical impediments that prevent families from getting their children to treatment centers to complete therapy.
- At current funding levels we are only treating about 1% of the children afflicted with eBL. This disease is so rampant in East Africa that we need additional funding to expand our program in order to be able to reach and treat multiple times the number of children with eBL in East Africa.
While our Impact is impressive for an organization that has only provided eBL care since 2012…..
…..WE KNOW WE CAN SAVE MORE LIVES!
PRIORITY 1: Continue to ensure that the critical treatment needs are being met
We have had the great fortune to partner with Direct Relief International (DRI), which has allowed us to leverage their relationships with the pharmaceutical industry to facilitate the donation of critical chemotherapy for our eBL patients. We plan to continue this partnership.
PRIORITY 2: Markedly improve the speed and accuracy of BL diagnosis
Burkitt lymphoma is the most aggressive tumor in humans, with the potential of doubling in as little as 24 hours. It must be diagnosed rapidly for the patient to have a realistic chance for cure. Currently Pathology faces severe challenges in sub-Saharan Africa;
- Shortages of trained pathologists, other trained technical staff,
- Shortage of or severely outdated laboratory testing equipment, and
- Expensive supplies required to run a pathology laboratory.
The BLFA has created a Pathology Improvement Project (PIP), directed by BLFA board president Dr. Steven Kussick. We are taking a two-pronged approach to assist our African partners in improving BL diagnosis:
1) In partnership with the Beckman Coulter Foundation, the PIP has developed a new diagnostic method – based on a very rapid and accurate technology call flow cytometry – that should be deployed in western Kenya by the end of 2016.
2) In collaboration with Dr. Suzanne McGoldrick of the UCI-Hutch group, the PIP is optimizing a second diagnostic method – immunohistochemistry – to complement flow cytometry in BL diagnosis.
Importantly, flow cytometry and/or immunohistochemistry can be used to diagnosis the great majority of other cancers beside BL, so the PIP’s legacy in Africa should go far beyond BL diagnosis.
PRIORITY 3: Remove barriers to the completion of BL treatment
Social and economic reasons are typically what cause a patient to stop treatment prior to completion.
BLFA is creating a community outreach program to provide both educational and financial resources to motivate patients and their families to get a full course of treatment, which typically includes 2 phases.
Cancer chemotherapy regimens, such as those for eBL, often consist of an initial phase which significantly shrinks the tumor(s) by killing the great majority of malignant cells. There is then a follow-up phase in which additional chemotherapy is given to eradicate small numbers of residual tumor cells.
For eBL patients to have a reasonable chance of cure, both phases must be completed. Discontinuation of therapy is an invitation to relapse.
Families often discontinue therapy when the visible tumor is gone. Typically this is because the child looks better and is feeling better. Combine this positive outlook with the financial and logistical barriers (the need to work, care for other family members and not be away from home), and it is often difficult to persuade the families to come back into the clinic.
The BLFA Community Outreach program will collaborate with community health workers to reach each child who has left the clinic. They will encourage the children to complete treatment and remain on a diet that includes the essential nutrients to help keep resistance levels up in order to minimize the risk of relapse.
PRIORITY 4: Dispel the myth that Burkitt’s Lymphoma is a death sentence
In sub-Saharan Africa, the misconception that cancer treatment is inevitably futile dissuades many patients from seeking treatment, even if treatment is available and can be provided at little or no cost. At BLFA, we plan to dispel this misconception in two ways:
1) As part of our larger outreach program, we plan to create a public education program about cancer and its treatability, and
2) By enabling cured patients to serve as living reminders to their communities that cancer is NOT a death sentence.