Patient Advocacy

One of the most important roles we play is helping families eliminate the numerous hurdles to cancer treatment. Transportation, housing, nutrition, social pressures, and lack of psychosocial support are some of reasons why families never start, or abandon, medical care. In ten years of this work, we have identified the specific interventions that relieve these stressors.

Transportation

Money for transportation to and from the clinics is known to be one of the most dominant hurdles to engaging in treatment. The trip is often 5 or more hours long on poor roads. BLFA will always make sure that monies are available to pay for transportation where resources are limited.

Housing & Social Support

In Tanzania, the BLFA aligned with ICCARE, an NGO that created a “Family Home.” Here they receive housing, several meals a day, education, transportation to/from the clinic and other services, creating a community of families.

Patients who use the hostel service have lower treatment abandonment (27% vs 37%) and higher one-year overall survival (47% vs. 37%), compared to patients who do not use the hostel. One highly impactful outcome is the emotional support. Families do not let each other abandon treatment and let the child die.

Nutrition

In 2022, BLFA is supporting ICCARE with an innovative multi-pronged approach to balance the children’s nutritional needs. Children diagnosed with cancer are at higher risk for malnutrition as cancer cells consume calories rapidly, increasing metabolic demands.

Access to nutritious food is a key concern to families. In Tanzania, most families have their own small “shamba” or garden that provides basic vegetables, which can then be bartered for staples like grain to provide a basic meal. Currently, the ICCARE Family Home provides two basic meals per day, mostly grains and rice, with fish or chicken twice per week. The additional cost of $.50 to $1.00 per day is too much for families to pay to add more varied foods.

Building an On-site Vegetable Farm

Led by a nutritionist and a local agriculture expert, ICCARE’s is developing a high-nutrient vegetable garden on land adjacent to the family home. This will allow for three meals per day that are more nutritious. Engaging resident families with community volunteers to maintain and harvest the garden provides an additional level of social support.

Hiring a Nutritionist

BLFA’s 2022 grant also supports a nutritionist who conducts regular nutritional evaluations with the children staying at the family home. These assessments provide a baseline of nutritional needs and are being monitored throughout the child’s treatment.

Providing Supplemental Nutrition

This grant also allows ICCARE to provide extra nutritional support to pediatric cancer patients at the medical clinic. Oncology nutrition specialists have created a vitamin-dense and highly caloric version of uji -- a staple childhood porridge -- to supplement the patients’ nutritional needs. The ICCARE garden will provide vegetables such as sweet potato and corn as primary ingredients for the uji.