During his third year at Makerere University medical school, Joseph Lubega decided to spend three months at the children’s ward of Uganda Cancer Institute (UCI) at Mulago. It was there that he met a patient who literally determined Lubega’s career choice.
“A little girl was brought from the slums of Bwaise. She had spent about two weeks at Mulago [hospital], but by the time she was brought here [UCI], she was already paralysed from the waist downwards,” Doctor Lubega, recalls. “I remember the day she was supposed to start her chemotherapy; we did not have drugs to give her. I went to friends and family in town to raise some funds for her drugs.”
However, when he handed over the money to the child’s mother, she said she would use part of it for food and rent. This immediately got him thinking about the wider challenges for families, especially the mothers, of children affected by cancer.
But after three months of treatment, the little girl died.
“She had got better, but the cancer had progressed. Scientifically, we couldn’t do anything to save her,” says Dr Lubega, taking a deep breath. “Personally, I did what I could for her life. But most importantly, she was one of the most cheerful little girls I have met.”
The three months Lubega spent at UCI changed his dream from becoming a cardiovascular surgeon to a pediatric hematologist and oncologist – the study of childhood cancer.
After graduating from MAK in 2002, he attended a two-month clinical placement in general and vascular surgery at The Royal London and Bart’s hospital in London. St Bart’s is the oldest hospital in England, having been founded in 1123.
Lubega later went for another short clinical placement in cardiology in Cologne, Germany, before returning to Uganda for mandatory internship at St Francis hospital Nsambya.
“By the time I finished my internship, it was clear in my mind what I wanted to do. I wanted to take care of sick children,” Lubega says. “I also wanted a field that is heavy on research and innovation in medical sciences. I wanted a field where the doctor bonds with their patient in a long-lasting doctor-patient relationship.”
With no specialist training in childhood cancers in Uganda, Lubega went to the UK. He spent five years in several institutions, including University Hospital of North Staffordshire in Stoke on Trent, Durham and Darlington University hospitals. Later, he moved to the USA.
“That was a hard decision for me because at that time I had two kids who were very young. But medical training in the UK was quite complex at the time, and one had to keep moving to many hospitals because most of their hospitals are relatively small. So, to get enough experience, you have to train in several hospitals that are typically significant distances apart,” he says, adding that opportunities for getting into research were very minimal.
Although moving to the USA as a graduate medical trainee requires doing various rigorous examinations, Dr Lubega excelled in all the requisite tests. His hard work paid off when he was surprisingly offered a training position at Children’s Hospital of New Jersey – one of the topmost pediatrics training programs in New Jersey – following an email inquiry he sent out.
Within six years, Lubega had completed two intensive training and research programmes, including three years at Baylor College of Medicine. Baylor is an affiliate of Texas Children’s hospital, America’s largest largest children’s hospital and largest cancer center.
“At Texas Children’s, we are at the cutting edge of medical discovery science,” Lubega says of the hospital where he remains a consultant and assistant professor. “However, the most unique part of it all is that we are all about children. It’s really a special environment to see the best brains from all over the USA and the rest of the world all focused on the health of children.”
Coming back to his home country in June 2016 was basically to initiate the East African pediatric hematology and oncology fellowship training programme for doctors to become super specialists in the field of pediatric cancers and blood diseases.
Mandated by the East African Community as well, the programme expects trainees from Uganda, Kenya, Tanzania, Rwanda, Burundi and South Sudan.
“My life’s goal is plain simple: to make any humanly possible positive impact on the life of children and families affected by childhood cancer and blood diseases,” says Lubega, awarded by Texas Children’s Hospital in 2014 as the ‘Best and Most Complete Fellow’.
“So, I made a very simple calculation. Eighty per cent of children with cancer live in poor countries such as Uganda and the rest of East Africa. In the USA, we know how to cure 80 per cent of children with cancer, and we are putting in all the effort to cure the remaining 20 per cent through innovative research.”
If making an impact on childhood cancers is his goal, then bringing already-established cures to the 80 per cent in East Africa is a low-lying fruit.
This implies that he has to continue contributing to innovative research to discover ways of curing the other 20 per cent that cannot be saved even in the world’s best children’s cancer centers.
The programme was launched in August and commenced in September 2016 at MAK School of Medicine in collaboration with Mulago hospital, UCI, and the ministry of health. It started with four pediatricians.
“I remember when I was doing my interview at Texas Children’s Hospital, my boss asked me: ‘Joseph, it has taken you nine years to enter your super-specialist training. How are other people in Uganda or Africa going to ever become specialists in this field?’” he reminisces.
“I didn’t even have to think about it. The answer was that we must start training them there in Uganda. My view is that the most important part of the doctors’ training is having patients available.”
This implied that with the many children with cancer and the friendly environment for training like the medical school at MAK and UCI, Dr Lubega would soon kick-start the first-ever medical super-specialist training programme in Uganda.
“You also need people who know the field to supervise the trainees, and that’s what I am here for. Additionally, we have some of the best pediatric surgeons, pathologists, and radiation experts that guide the trainees. We are also very fortunate that we have the support of Texas Children’s hospital and Baylor College of Medicine. We have some of the world’s best experts in various aspects of childhood cancer and blood diseases join us at UCI/MAK to support training,” he says.
Dr Lubega was thus largely involved in designing the curriculum and organizing the structure of the programme. At the moment, he is serving as the training programme director.
“Thankfully, while we were doing all this at the technical perspective, the ministers of health of all the East African countries had similar thoughts. They decided that the only way we can make progress, especially in fields like cancer, is by centralizing training for medical doctors in East Africa so they can acquire training in a specific disease that is largely neglected,” he explains, adding that UCI and MAK were allocated to provide training in cancer.
This year, the two-year programme has already received at least 10 applicants across the region. The programme is structured in such a way that the trainees spend much of their time at the bedside with patients, learning the best ways to treat, cure, and support children and their families through cancer, sickle cell disease, hemophilia, and other blood diseases.
In the long run, Dr Lubega says the programme should produce successful specialists who will sustain the highest-quality care for children with cancer and blood diseases in Africa. They will also understand the scientific principles that underpin the care of childhood cancer and blood diseases and, therefore, drive the field forward from the research perspective.
“First of all, we know a lot about cancer from Europe and the USA, but some of the practices used there may not apply here. We may have to adapt some practices, but also there may be aspects that are unknown and are yet to be discovered especially here in Africa,” he says.
Also, the trainees’ success will be defined by their leadership skills; implying that since they are the pioneers, they are expected to train other trainees in the future for the continuity of the programme. Nurses are also not neglected. They are given the necessary training periodically, and very soon UCI will have a certification programme for nurses who wish to become experts in this field.
In the same vein, pathologists are also not left out because they help in explaining whether certain tumors are cancerous or not, and identify the types of cancer. The result will be having a strong team that can comprehensively treat pediatric cancers and blood diseases to achieve cure and survival rates that are similar to those in developed countries.
When the four pioneers of the East African training programme graduate, they will join Dr Lubega and Dr Joyce Kambugu who is the substantive head of the children’s service at UCI. She is currently in South Africa completing her specialized training in pediatric cancer.
“That’s enough critical mass of experts to sustain the highest quality of care, research and education. The goal is that in five years, 70 to 80 per cent of children with cancers should be cured,” optimistic Lubega believes.
Asked as to whether he will be going back to live in the USA, he quickly explains that the reason he prioritized training local specialists is to ensure there will always be a team that will understand the mission, and move the programme forward even when he is not here.
“I am sure within five or six years, we shall be having a self-sustaining system that is not dependent on any one person. We are very lucky we still have a lot of support from Baylor College of Medicine and Texas Children’s hospital. We believe that will go on as long as we need their help especially in terms of building capacity locally,” he says.
Dr Lubega is also chairing the newly-formed Pediatric East African Clinical Oncology Consortium (PEACOC); an umbrella under which all individuals taking care of children with cancers in the region subscribe.
Membership is not limited to doctors. The aim is to develop standard guidelines on how best such cases can be treated and help the government plan and invest resources in the field. PEACOC would also help to avoid taking children with cancer to hospitals or clinics that have no capacity to take care of them.
CHALLENGED BY PEOPLE'S BELIEFS ABOUT CANCER
Besides personnel, his second biggest challenge is lack of knowledge and the negative attitudes of the public towards cancer.
“Most people in Uganda think that if you have cancer, you are going to die. That is understandable, but I can tell you 80 per cent of children with cancer are curable. No one really thinks about that,” he says. “The problem with most families is that when their child is diagnosed with cancer, many become totally hopeless. But also, it becomes very difficult to get them involved since it requires a lot of effort to successfully go through therapy.”
Because cancer care is such a complex process, he argues that this calls for family and parents’ patience and participation. Using an example of leukemia that takes two to three years of treatment in children, Dr Lubega says that parents ought to follow specific instructions and all scheduled visits to the UCI in order to achieve cure.
“Many of our parents abandon therapy…because, I am sure, they sit down and prioritize, look at all their family challenges and decide it’s not worth spending resources on a child they think is not going to survive anyway. So, they give up when the going gets tough. We know that many don’t even come to us, at all,” he says.
He adds that there are those who, after being diagnosed with cancer at Mulago hospital, refuse to go to UCI on referral. Instead, they go back home to wait for death.
THE BELL OF HOPE
Whenever he receives a new case at the children’s ward, he and team counsel the parents for at least two hours and give all the necessary information regarding treatment, side effects, and the chances of survival. Here, the aim is to give hope and demystify the notion that cancer equals death.
Amidst hopelessness and disbelief that cure is possible, Dr Lubega thought of what could bring more courage to the despair. He thought quickly about ‘the bell of hope’ ceremony.
Under this social innovation, whenever there is a child who has successfully completed treatment with evidence he/she is likely cured, the child has a red-carpet walk through the aisle of the children’s ward and an ovation of parents of other children with cancer. Then he/she rings the bell to show hope to other patients and parents.
“When I started this in November last year, I did not anticipate the impact it would have until we did it. Most parents come back to me with positive confessions and signs of hope that their children, too, can be cured,” he says.
He assures all parents with children with cancer that chances of cure are very high, provided patients are under the care of professionals and required treatment.
EARLY EDUCATION, FAMILY
Born to John-David Nnaakirya (RIP) and Juliet Kizza Nnaakirya of Bunamwaya in Wakiso district, Lubega attended Kitebi primary school in Wankulukuku. He later attended Sacred Heart Seminary in Mubende where he wanted to become a priest, but later realized his real passion was in biomedical sciences.
It was from there that he joined St Mary’s College Kisubi where he excelled in Physics, Chemistry and Biology (PCB) at A-level. Dr Lubega recalls his colleague Dr Kambugu was the best in PCB. He came second during their year.
“Therefore, I believe we have formed a winning team here to take care of children with cancer and blood diseases,” he says with a smile.
The 38-year-old pediatrician, oncologist, hematologist and medical scientist is married to Winifred Namagembe – a nurse by profession.
During his free time, he enjoys playing with his children, plays the church organ, and watches soccer; most especially when the Gunners are playing. Lubega is also a self-described feminist and child rights activist. His former classmate Remmy Matte describes him as a “good time manager and dedicated fellow”.
“He is some focused guy. At high school, we used to sing together in the school choir and he has his way of managing his time. One great thing about him is that he knows how to manage the things he does,” says Matte, adding that Lubega is strict to principles.
Dr Lubega has also authored Ebyama bya Walumbe; a book written in Luganda, explaining various diseases, their symptoms and treatment and how they affect the body.
The book also provides preventive measures against various sicknesses. He explains that he authored it in his mother tongue for his target audience to better understand the topics therein.