Sickle cell cuts young doctors’ dreams short

Sickle cell, a genetic blood disease that affects red blood cells, has caused grief in the medical fraternity as their colleagues, who had sacrificed to save lives, unfortunately die before fulfilling their dreams.

In less than two years, three Makerere medical students and one medical intern from Uganda Christian University, succumbed to the disease. Experts say there are still a lot of gaps that need to be addressed to fight the disease in the country.

Dr Steven Mulungi Kasule

On November 23, 2023, darkness befell the entire medical fraternity, especially in the current cohort of medical interns, with the sad news of the passing of one of their own.

The medical report and family said Dr Steven Mulungi Kasule, a son of Makerere University Radiologist, Prof Michael Grace Kawooya and Mrs Petrina Kawooya Mirembe, succumbed to sickle cell disease at Mengo Hospital, which the family got to know at the age of four years.

Dr Kasule, 27, was one of 2023 pioneer graduates of Uganda Christian University School of Medicine, who had graduated with Bachelor of Science in Medicine and Surgery. He was also an intern doctor at Mulago National Referral Hospital where he had served for only six months.

 Just two days before his death, Dr Kasule had posted on his X account, formerly Twitter: “So, my body decides to get a crisis a few days to Gaby.”

This probably created an emotional moment to his friends who read it days after receiving the sad news of his death. He started school at Peak Kindergarten in 2002, and later joined Green Hill Academy for his Primary Level. In 2009, Kalule joined King’s College Budo in Wakiso District for both Ordinary Level and Advanced Level. He then went to Makerere University and later joined Uganda Christian University to complete his medical degree course.

In the condolence messages by family and friends, everyone described him as a hardworking man with great ambitions.

 During the vigil at St Francis Chapel at Makerere University on November 24, Prof Kawooya, the deceased’ father, said: “He was very brave and courageous. Whatever he would start, he would make sure he finishes it well. He was also a good innovator and a person who loved his profession.”

The deceased’s mother said his son was a very brilliant boy and very strong.

However, she said raising a child with sickle cell is very challenging. She asked schools and employers to consider reducing the days and working hours for these patients.

“These children are good despite the fact that they cannot work like any other normal child. They should be allowed to have freedom to work for fewer days and hours,” Ms Kawooya said.

Also, Dr Robert Alinda, who was a close friend of the deceased, described Dr Kasule as a humble, ambitious and hand working fellow.

“Steve was not only a friend but a young man in pursuit of his Godly purpose. His commitment to self-improvement was evident when he applied for an online course in epidemiology at the University of Washington. He saw opportunities in our internship at Mulago and encouraged us to make the most of them,” Dr Alinda said.

He added: “Even in the face of illness, Steve remained a warrior akin to David—relentless and focused on achieving his purpose. His determination and selfless encouragement will forever be etched in our hearts.”

Joshua Bagenda

On December 14, 2023, Joshua Bagenda, a third year student of Medicine and Surgery at Makerere University, also succumbed to sickle cell disease at Mulago Hospital where he was admitted a day before his death, according the hospital reports and family.

Makerere University College of Health Sciences described Bagenda, a resident of Mitchel Hall, as a humble and kind friend to many.

In her condolence message, Dr Sabrina Kitaka, a senior lecturer in the Department of Paediatrics at Makerere University School of Medicine, said on her X account: “Rest in everlasting peace Joshua Bagenda...We celebrate you for your service, sacrifice and courage.”

Mr Rodney Ssebunya, a friend of the deceased, described him as a humble soul and a true example of a living sacrifice unto the Lord.

  “He was also very passionate about his medical career as he knew what it meant to be sick. Even in his first clinical year, he would passionately take care of patients,” he added.

 Edgar William Nsumba

 On October 28, 2022, Makerere University fraternity had an emotional evening caused by the disheartening news of the death of one of their fifth year students of Medicine and Surgery.

Edgar William Nsumba, who was also a resident of Mitchel Hall at Makerere University, succumbed to sickle cell disease.

On October 29, 2022, his brother, Mr Paul Trevor Kigozi, posted a death announcement on his X account.

“Friends, tragedy hit home last night. My young brother lost his battle to sickle cell anaemia a few hours after finishing his last paper in Medical School. That horrible disease!......My heart has been ripped from my chest, my chest,” Mr Kigozi posted.

Ms Shamim Nambassa, the former Makerere Guild president, who was also a close friend of Nsumba, said in an interview with this publication that Nsumba was a promising doctor.

“I met Edgar in first year, we were together in our very first tutorial groups and we became friends from that time till he passed on. He was a friend and a good person with almost everyone at school and in his hall of residence,” Ms Nambassa said.

She added: “Most of us knew about his illness but he was really strong and not at any moment would you find him beating himself over it. Even the day before he died, he was sick but still came and did his last exam. He was also so intelligent like really intelligent.”

Disease burden

The statistics from World Health Organisation indicate that approximately 5 percent of the world’s population carries trait genes for haemoglobin disorders, mainly sickle-cell disease and thalassemia. In addition, more than 300,000 babies with severe haemoglobin disorders are born annually globally.

More than 66 percent of the 120 million people affected worldwide by sickle cell disease live in Africa and 38,403 deaths from sickle cell disease were recorded in 2019, a 26 percent increase from 2000. Statistics from the Uganda Health Ministry show that about 250,000 people are living with the disease and 20,000 babies are born with sickle cell disease annually. Of these, at least 50 percent die before reaching the age of five years.

Uganda has 7 centres of excellence which conduct new-born screening and 70 satellite clinics across the country, which offer care and management of sickle cell children. Dr Bill Adrati, the president of medical interns in Uganda, said the government has done little to create awareness about the disease, hence its prevalence.

“Prevention challenges are arising from general ignorance about the disease. It’s a genetic disorder that can easily be prevented when the public is well sensitised through public health awareness campaigns and genetic counselling. This allows couples to match accordingly to produce healthy children,” he said in an interview with this publication.

“There are gaps in screening too because it’s not yet mandatory and the public is not yet well sensitised,” he added.

Dr Phillip Kasirye, the head of sickle cell clinic at Mulago hospital, said access to test facilities is another challenge in addressing this problem.

“They are still limited and for us we continue to advocate for increased awareness and increased access to testing, as well as services such that people can know, “he said.

Dr Kasirye also pointed out that counselling is very important, however, it has been so limited to HIV/Aids and sickle cells have remained silent.

“In the mainstream health system, there is little provision for counsellors. Most of them are mainly for HIV/Aids programmes. So, this is another area we are supposed to focus on,” he said.

Dr Adrati urged the government to make screening mandatory or encouraged as a premarital condition, as well as reducing the cost of medication for patients in order to control its prevalence.

“Many patients of sickle cell do not have access to medicine because it is too expensive. Generally, it’s children from well off families, who can sustain costly medication options. Those from poor families generally have shorter lifespan due to the high cost of sustaining life through treatment,” he said.