How misconceptions, spousal desertion are crippling sickle cell treatment efforts

Health experts and policymakers have raised a red flag over the persistent stigma, deep-rooted cultural misconceptions, and high rates of spousal abandonment surrounding sickle cell disease in Uganda.

Medical professionals reveal that these challenges continue to derail treatment outcomes, forcing some parents to hide affected children or completely reject lifesaving medical care.
The concerns were highlighted on Friday, June 19, during the launch of the Rooted Life Foundation in Rubaga Division, Kampala. The event coincided with the global commemoration of World Sickle Cell Day.

Founded by former Mityana District Woman Member of Parliament, Ms. Joyce Bagala, the foundation aims to champion awareness, screening, advocacy, and holistic support for affected families.

Speaking at the launch, Dr Henry Ddungu, a consultant haematologist and oncologist at the Uganda Cancer Institute (UCI), noted that public stigma remains one of the greatest barriers to combating the disease despite advancements in medical science.
“Families hide their children or conceal a diagnosis for fear of being shunned by society. The visible and debilitating nature of the disease often leads to negative perceptions, affecting patients’ mental health, social integration, and even employment opportunities,” Dr Ddungu said.

He noted that some patients have lost employment due to frequent hospital visits, while others miss out on vital treatment because parents succumb to misinformation.
“I have seen families refuse medicines such as hydroxyurea because of fear and misinformation. Some even claim their children are allergic to it without trying it. Yet when they eventually accept treatment, many return and say it has worked,” he added.

Sickle cell disease is a genetic disorder affecting haemoglobin—the protein in red blood cells responsible for carrying oxygen throughout the body. The condition causes red blood cells to become rigid and crescent-shaped, blocking blood flow and triggering severe pain, recurrent infections, and progressive organ damage.
Affects roughly 7.7 million people, a 40 percent increase since 2000, causing over 375,000 annual deaths.

Bears the highest burden, with over 500,000 babies born with the disease annually. Between 50 percent  and 90 percent die before adulthood.
According to the Uganda Sickle Cell Surveillance Study, the sickle cell trait prevalence stands at 13.3 percent, while active disease prevalence is at 1.3 percent.

“In northern Uganda, one in every five people carries the sickle cell gene,” Dr. Ddungu revealed. “Every year, up to 20,000 babies are born with sickle cell anaemia in Uganda, and between 30 and 40 percent die before their fifth birthday. It remains one of the leading causes of admission in paediatric wards.”

Dr Emmanuel Ssekasanvu, a consultant physician and nephrologist, explained that cultural myths historically linked the disease to witchcraft or generational curses, leading families to ignore the actual medical causes.
Dr. Ssekasanvu pointed out that women disproportionately bear the brunt of the social fallout when a child is diagnosed.

“The tendency in some families is for men to flee when a woman gives birth to children with a genetic condition. The woman cannot run away from her children, so she carries the responsibility alone,” Dr. Ssekasanvu said, clarifying that the disease is inherited from both parents.

The Ministry of Health acknowledged the gaps in public awareness, specialized health infrastructure, and human resources.

Mr Richard Kabanda, the Commissioner for Health Promotion, Education and Strategic Communication, who represented the government as chief guest, stated that the country’s youthful demographic must be the primary target for behavioral change.
“We need to rethink how we create awareness about sickle cell disease. About 70 percent of Uganda’s population is below 25 years. These are the young people we should be targeting because they are making decisions that will shape future families,” Mr. Kabanda said.

He admitted that the government infrastructure still faces a shortage of nurses and doctors trained specifically in sickle cell management, calling upon non-state actors and community organizations to bridge the gap.
For Ms Joyce Bagala, the launch of the Rooted Life Foundation was a deeply personal milestone, driven by her own family’s experience with the condition.
“When sickle cell disease entered my family’s life, it brought challenges that no parent can ever fully prepare for,” Ms. Bagala shared. “But perhaps the most painful lesson was realising how little many people know about this disease.”

She emphasized that the foundation’s pillars—advocacy, screening, and family support—aim to ensure that no Ugandan family walks the painful path in isolation or ignorance.
Dr. Ddungu commended the initiative, noting that grassroots advocacy complements the Ministry of Health’s nationwide mandatory newborn screening programme to ensure early diagnosis and intervention.