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We Take A Holistic, End-To-End Approach To Helping Cure Children.

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.

OUR PRIORITIES

PRIORITY 1: Ensure early care-seeking and understanding of childhood cancer

  • Increase community awareness about childhood cancer early warning signs
  • Improve understanding about childhood cancer among healthcare providers
  • Assist families and patients to understand the meaning of the diagnosis, the treatment process, and the importance of follow-up visits

PRIORITY 2: Markedly improve the speed and accuracy of diagnosis

  • Provide state-of-the-art diagnostic equipment and reagents within high-volume treatment centers
  • Build skills among medical and laboratory personnel to effectively use the diagnostic equipment for accurate results

PRIORITY 3: Remove barriers to accessing and completing childhood cancer treatment

  • Offer support to families including transport and housing near treatment centers
  • Ensure supply of adequate chemotherapy and palliative medications
  • Provide families with a means of direct communication with clinics for appointment reminders and care questions
  • Support patients with supplementary nutrition and nutrition monitoring

PRIORITY 4: Dispel the myth that childhood cancer is a death-sentence and nothing can be done

  • Raise community awareness about cancer and treatment success stories
  • Facilitate psychosocial support for childhood cancer patients and their families
  • Provide ongoing patient monitoring throughout patient follow-up period into remission
  • Improve family caregiving skills to promote early detection of recurrence and late effects of treatment

CURRENT PROGRAMS

BLFA works collaboratively with our program partners to lower barriers to the vital steps necessary for successful treatment of childhood cancer in Africa.

PATHOLOGY IMPROVEMENT PROJECT (PIP)

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.

  • In Uganda in 2019, there were roughly 10 to 15 cancer-focused pathologists for this country of 43 million people, or roughly 0.02 to 0.03 per 100,000 people, versus 3.94 pathologists per 100,000 people in the United States. 1

  • In western Kenya, the 4 pathologists at the Moi Teaching and Referral Hospital serve a population of roughly 13 million people. 2

  • Pathology turnaround time – the duration between the performance of a biopsy and the time that the patient’s physician receives the pathology report – is typically on the order of weeks in sub-Saharan Africa for the overwhelming majority of patients who are unable to pay for their own pathology services.

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

BLFA Solution

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

PROJECT MALAWI – A Collaboration with University of North Carolina

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

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Comic Book: In an effort to educate children (and adults) about the signs of cancer and the importance of getting a medical review. It features a superhero and children encouraging children from diagnosis through treatment completion

DOWNLOAD THE PDF

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.

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Video 1 – What is cancer

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Video 2 – Diagnostic Testing

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Video 3 – Cancer Treatment

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Video 4 – Symptoms and Side Effects

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Video 5 – When to Seek Care

Play Video

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.

International Cancer Care and Research Excellence (iCCARE) – Tanzania

Supporting Basic Needs In collaboration with iCCARE, BLFA funds temporary housing and transportation for childhood cancer patients and their families during their treatment cycles. The ability to have a safe and comfortable place to stay and transportation while in treatment is paramount to fully completing all treatment protocols. This is particularly essential when the child either needs to be in the hospital for weeks at a time or close to the hospital for regular treatments. These services fill a gap identified by iCCARE indicating a correlation between poor patient outcomes and distance from the treatment center. Unexpected Benefit: Dr. Kristen Schroeder, Assistant Professor, Pediatric Hematology Oncology / Neuro-Oncology and Assistant Research Professor, Duke Global Health Institute, Duke University Medical Center, our programmatic contact at iCCARE, reports that the sense of community built by the families at the shelter has directly reduced the treatment abandonment rate. The families at the group home give mutual emotional support, influencing each other to stay with the treatment plan and never give up.

Group home for families of cancer patients in Tanzania 

St. Mary’s Hospital Lacor – Gulu, Uganda

Having full-time clinical staff available to treat children in the pediatric oncology ward is essential to consistent and focused treatment. In collaboration with St. Mary’s Hospital Lacor, servicing the Northern part of Uganda, BLFA supports childhood cancer treatment by funding key staff salaries. Key clinical staff funded by BLFA include a pathologist, a pediatrician, a pathology lab technician, a nurse, and a support counselor. BLFA also helps fund vital supplies and diagnostics. As with all programs, we make monies available for patient and family transportation to and from the hospital.

Uganda Cancer Institute – Kampala, Uganda

BLFA offers further support in Uganda in collaboration with the Uganda Cancer Institute (UCI) and the Fred Hutchinson Cancer Research Center. Dr. Joyce Kambugu, research investigator with UCI-Hutchinson Cancer Alliance and head of pediatric oncology at UCI, has been an instrumental leader in our partnership. Over the course of our multi-year collaboration, BLFA has funded diverse care support activities for children presenting to UCI with Burkitt’s Lymphoma, including diagnostic and staging coverage, transportation support, nutrition support, care navigation, purchasing of chemotherapy during drug shortages, and case follow-up from nurses to ensure patients remained in care. We currently support transportation coverage to ensure families reach vital treatment, regardless of distance from UCI.
I WANT TO HELP

Research Completed by BLFA Board Members, Program Partners, and Collaborators:​

“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]
https://onlinelibrary.wiley.com/doi/abs/10.1002/pbc.27813

“Cost Effectiveness of Treating Burkitt’s Lymphoma in Uganda”
[Cancer, Volume 125, Issue 11, June 1, 2019]
https://acsjournals.onlinelibrary.wiley.com/doi/full/10.1002/cncr.32006 

“Presentation and Outcomes of Childhood Cancer Patients at Uganda Cancer Institute”
[Global Pediatric Health, May 2019]
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6537233/

“Prospective study of Burkitt’s lymphoma treatment in adolescents and adults in Malawi”
[Blood Journal 2019 Feb 26; 3(4): 612–620]
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6391663/

“Pediatric Cancer in Northern Tanzania: Evaluation of Diagnosis, Treatment, and Outcomes”
[Journal of Global Oncology, v4, 2018]
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6180837/

“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]
https://www.archivesofpathology.org/doi/full/10.1043/2009-0443-EP.1

“Burkitt’s lymphoma in Africa, a review of the epidemiology and etiology”
[African Health Sciences, 2007 Sep; 7(3): 166–175]
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2269718/