Thirteen-year old Raphael Ssajjabi, a leukemia survivor, can not wait for schools to reopen after the ongoing COVID-19 pandemic subsides. The Ugandan teenage boy went through harrowing tales as his single mother had to take care of him as well as fend for his two other siblings.
Ssajjabi had to drop out of school to concentrate on chemotherapy amid talks in his neighborhood that there are no leukemia survivors. “I could hardly walk when I was brought here. My mother cuddled me as a baby on her back. Doctors gave us hope, but people were saying that leukemia cancer doesn’t get cured,” Ssajjabi told Xinhua in a recent interview as the country joined the world to commemorate September as Childhood Cancer Awareness Month. The commemoration aims at increasing awareness on the achievements and challenges in caring for children and youth with cancer, their families, and survivors of childhood cancer.
Ssajjabi is one of the increasing childhood cancer cases in Uganda, according to experts. The child is among the 652 children diagnosed with cancer in two years at the Uganda Cancer Institute (UCI).Peter Wasswa, a specialist at Global Hematology Oncology Pediatric Excellence (Global HOPE), said the challenges affecting the fight against childhood cancer include lack of awareness, late diagnosis, lack of access to treatment and supportive care, among others. Global HOPE is a program between Texas Children’s Hospital in the United States and UCI aiming at building capacity to treat children with cancer.
Wasswa said globally about 400,000 children are diagnosed with cancer each year and over 50 percent of these cases are in sub-Saharan Africa. Esther Wanyenze, a community awareness and advocacy program officer, said Uganda is making efforts to raise awareness about childhood cancers. Wanyenze said some of the measures include developing campaigns like virtual childhood cancer run which raises funds that go to supporting families affected by the scourge.She said there have been also community outreach programs as well as training of medical staff on management of childhood cancer.
These measures, according to Wanyenze, have yielded results including increasing the survival rate of childhood cancer to 75 percent from 30 percent in 2019. She said parent-led counseling and support groups have been established to help families understand their child’s diagnosis and clinical treatment plans. “Some of the parents’ support groups have been trained and equipped with information so that they help children and parents who begin their cancer journey and spread awareness of childhood cancer in their home communities,” she said. Experts say the fight against childhood cancers has been affected by the ongoing COVID-19 pandemic, which has made access to treatment and diagnosis difficult due to the lockdown measures.
Parents have to walk long distances to access treatment for their children as public and private transport is occasionally halted by government to contain the spread of COVID-19.”Most of the childhood patients are from upcountry, during the lockdown, transport fares are hiked, which forces some of them to miss their treatment session,” Wasswa said. UCI recently said it is working to improve cancer health care in the country as the cancer burden increases. The institute said it is continuing to decentralize cancer health care so that the population can access it within their localities. “It is estimated that for every 100 new cases diagnosed, 80 of them die majorly because they come to our health facilities late,” UCI said in a recent statement.
Several cancer services have been decentralized at least up to the regional level according to the ministry of health. Previously patients were traveling all the way to UCI in the capital Kampala to access care services. According to the health ministry, currently 198 cancer experts are being trained in different fields to diagnose and manage cancer, undertake cutting edge cancer research and offer training in cancer across the country. The country is also working on establishing a National Reference Laboratory for Cancer, which will improve cancer diagnosis and other non-communicable diseases, according to the ministry.