‚ÄčThinking Globally to Help Families Battling Childhood Cancer

Heather Lukolyo, MD, MHS, FAAP

September 17, 2018

“I am the center of laughter of my community,” Aminah* told me as she explained how her life had changed since her daughter was diagnosed with and began treatment for cancer.

Because of the cancer diagnosis, Aminah and her family faced stigma and ostracism fueled by myths and misconceptions about the disease within her town. She described hearing comments from community members so cruel that they bordered on mocking.

“The girl will die anyway. Why are you wasting your time and money?” one asked. “Your daughter must be bewitched to have such a bad diagnosis,” another commented. Still others suggested, “Your husband should leave you now, since you produce children with cancer.”

Confronted with her daughter’s cancer diagnosis, Aminah became her primary caregiver. She stayed at her daughter’s bedside while the girl underwent treatment at the national referral hospital in Uganda. These bedside vigils pulled Aminah away from her six other children at home and her subsistence farming that supported the family. Her choice to care for her daughter led to the family’s further entrenchment into poverty.

Huge disparities in childhood cancer survival rates exist worldwide. In Aminah’s world, 90 percent of children with cancer die, compared with the U.S. survival rate of over 80 percent. In addition, a significant majority of pediatric cancer cases (80 percent) occur in low- and middle-income countries such as Uganda.

Non-communicable diseases such as cancer, cardiovascular disease, and diabetes, were once viewed as afflictions of the affluent. With shifting demographics, lifestyle changes, and other factors, however, these diseases are now the leading cause of death among women in low- and middle-income countries. Breast cancer, cervical cancer, and gestational diabetes are among the those specific to women, and women in low- and middle-income countries are disproportionately affected. For example, 86 percent of deaths from cervical cancer—which is now preventable with the HPV vaccination and screening—occur in low- and middle-income countries.

Coupled with low levels of literacy, high rates of poverty, and limited decision-making power, many women in low- and middle-income countries also face many barriers to accessing timely diagnosis, treatment, and ongoing management of chronic disease--for themselves or for their children. As a result, they face worse prognoses and preventable, premature deaths. Myths and misconceptions and poor understanding of non-communicable diseases only compound these issues. Women like Aminah often face stigma, ostracism, blame, and lost livelihood as they try to save their children’s lives.

"Huge disparities in childhood cancer survival rates exist worldwide. In Aminah’s world, 90 percent of children with cancer die, compared with the U.S. survival rate of over 80 percent.”

Initiatives such as Global HOPE (Hematology Oncology Pediatric Excellence), a program based at Texas Children’s Cancer Center, aim to improve the situation for families like Aminah’s. Our goal is to build long-term capacity to treat and dramatically improve the prognosis for children with cancer and blood disorders in Sub-Saharan Africa by providing training for local healthcare providers, helping to strengthen health systems, and increasing access to chemotherapy and other essential medicines.

This month, the United Nations will host a high-level meeting to review progress and renew commitments to address non-communicable diseases. As we focus increased attention on non-communicable diseases globally, we must pay special attention to their impact on women and girls. Children, in particular, often have been left out from non-communicable disease control and prevention planning because the World Health Organization traditionally only tracked deaths from these illnesses if they occur between the ages of 30 and 70.

As pediatricians, we should encourage policy-makers to adopt a life-course model to address specific needs of girls and women across the lifespan to improve access to prevention, health information, care and treatment.

Aminah and her daughter remind us of some of the unique intergenerational challenges that women and girls face when a family member is diagnosed with a non-communicable disease in a low- or middle-income country. Thankfully, with access to care and psychosocial services, Aminah’s daughter is in remission and they are back with their family in rural Uganda.

* Name and some identifying details have been changed to protect the privacy of individuals.

*The views expressed in this article are those of the author, and not necessarily those of the American Academy of Pediatrics.

About the Author

Heather Lukolyo, MD, MHS, FAAP

Heather Lukolyo, MD, MHS, FAAP, is the Director of Community Outreach and Advocacy for the Global HOPE (Hematology Oncology Pediatric Excellence) a program at Texas Children’s Cancer Center. Dr. Lukolyo is also a pediatric hospitalist at Texas Children’s and an assistant professor in the Department of Pediatrics at Baylor College of Medicine. She is an executive member-elect for the AAP Section on International Child Health.