Dr. Joseph Lubega is the head of the pediatric (children’s) ward at Uganda Cancer Institute. Currently he is the only pediatric oncologist (cancer doctor) in the country. He is at Uganda Cancer Institute on attachment from the Texas Children’s Hospital in the US and he has made tremendous improvement in treatment and care of childhood cancers as he narrated to Musinguzi John.

My name is Joseph Lubega and I am a 38year old medical doctor specializing in pediatric cancer and blood diseases. I am also a researcher trained both in laboratory and epidemiology field research. I am also an assistant professor of pediatrics in the section pediatrics, hematology and oncology at Texas Children’s Hospital in Houston, USA and Baylor College of Medicine where I’m a consultant.
I am married to a nurse and we are blessed with two children who are 9 and 10 years old. It’s a small family but that’s what I can manage in the middle of all the pediatric oncology.

[Laughs] You could say that but I think in my view it takes a lot of time to raise a family and if you spent 12 hours a day at work then there’s no reason to have 9 children.

Well I would say it’s absolutely true. What has happened in the evolution of cancer centers is that most of them start off being adult driven. As a matter of fact even in the US for example the National Cancer Institute, the children over there were treated by adult oncologists for many years. It’s the same story in Uganda as you know Uganda Cancer Institute was started in 1967 as a research center for Burkitt Lymphoma which is a predominantly childhood cancer. However it took 42years until 2009 for the Institute to hire their 1st pediatrician who was based here ever and that is Dr. Joyce Kambugu. As you know right now Joyce had to go overseas to do her training to become a certified pediatric oncologist. So at the moment yes, I’m probably the only pediatric oncologist in the country.

But one of the things we have to do is to change this and actually the main reason I’m here is to train is to train pediatricians in Uganda in Pediatric Hematology and Oncology. We are training them properly based on international standards and that’s the mine reason I came back to Uganda. We enrolled 4 pediatricians as part of the East African Oncology Institute initiative and they are learning a lot on how to take care of children with cancer and blood diseases. So I can say with confidence that in two years Uganda will not have only one pediatric oncologist but six.

That’s true I’m here temporarily because we have a collaboration between Texas Children’s Hospital, Baylor College of Medicine and Uganda Cancer Institute together with Makerere University Medicine School to support this training process and improve care and research in pediatric oncology and hematology. So in that sense I’m here temporarily but at the end of the day I’m Ugandan and even when I have been physically away I have not really been away from UCI. I have been involved in different types and levels of activities at UCI since 1999 as a 3rd year medical student so as far as I’m concerned I have never gone away. I’m always tuned in and committed to whatever development that we are introducing in the pediatric oncology area.

Yes you’re right and there are two aspects to that, one is that we estimate there are between 4000-5000 new pediatric cancer cases in Uganda every year. Of those UCI sees only around 400 patients every year. So we are only seeing around 10% of children who get cancer in the country and we can assume that short of the few cancer centers like Lacor in Gulu, most of these kids die without care. There’s a price to having few specialists in the country in this field. Whereas people may say it with pride that “I’m the only pediatric oncologist in the country” when I hear that my heart sinks because that means I cannot take care of all the 5000 kids.

The other aspect is that it means you have to work harder. I’m typically at work by 7:30am and sometimes I leave as late as 10pm and I’m on call 24/7 every day of the week. It’s kind of non-stop. But again I look at this as our development phase. The goal is that with the pediatric oncologists we are training all that will change in a very short future.

I think the key to the changes I have tried to introduce in the children cancer ward may not all be necessarily about oncology. Some of them are specific to cancer and others are about the general way clinicians practice medicine in Uganda. I’ll tell you about the general things first, one of them is really commitment to patient care. It is very easy with all the difficulties of medical practice, low pay and a lot of incentives in research and other areas, for people to forget why they go to work every day as doctors, which is to take care of patients. Even when you’re doing research or education your ultimate goal is patients. To me any medical system that neglects the patients has got it wrong. Like I always say I have never seen a center of excellence in medical education and research that’s not a center of excellence in patient care. Everything starts with patients and if you get that wrong your education is going to be wrong and your research poor quality.

Patient care has been my main focus and that means patients have to be seen every day. You cannot use a mode that is common around here called a major ward round where you have we the experienced people come once in a week to see patients and then for the rest of the time patients are seen by interns and doctors in training (those on a master’s degree training). That’s one thing. The second thing is that there’s a doctor available to address issues 24/7 so for that we have a call system. It may not necessarily mean that we have a doctor on the ward but if there’s an emergency on the ward the nurse can attend to the patient or the patient can reach a doctor and talk to them. Third is just the idea of being very rigorous and understanding especially when you’re taking care of patients that come from very poor backgrounds. Sometimes when dealing with patients that don’t speak your language you have to be very careful. You have to stop and give those patients a lot of attention. These are patients who come with their child, lay in bed, see people pass by them. They are watching their child getting sicker but they have no one to talk to because they don’t speak the language and before you know it people are like “Oh! This kid was in this bed and died.” Just paying attention to those who are very vulnerable in the system is important. Those are system-wide issues that have nothing to do with oncology.

From the oncology perspective it’s really about further educating the nurses about the unique needs of kids living with cancer. They have to recognize that childhood cancers are acute diseases that spread so fast. You can’t wait for days to make a diagnosis and start treatment. When you start treatment you should know that you’re pushing their bodies to the edge. So you have to be able to support them by anticipating problems and solving them. It’s not just a matter of giving chemotherapy. You should know that once you give the chemo they are going to get complications which you should anticipate and treat. Perhaps one of the most important things we have done in that regard is engaging parents. You cannot successfully treat children with cancer without getting the parents to understand what you are doing. They have to know the schedules and to recognize complications and come to you when they see them. What we do now is that for every child that is diagnosed with cancer we sit with their parents and explain to them what we have found, what stage it is, how we are going to treat it, the complications involved and how long they should expect to be in hospital, what means for the child’s schooling and the family and so on and so forth. All these are to make sure that they take good care of this child. You need to know that once a child is diagnosed with cancer it’s going to affect the whole family. This mostly affects the family income because it means that one of the parents has to stop working and take care of the child.

Oh yes actually I just looked at our data from March to November of 2016, the mortalities have gone down by over a half. We want to see if we can sustain that because it’s one thing reducing mortalities when those children come to us and we save them and it’s another having them survive their cancer on a long term with good quality of life. Another thing we worked on the psychosocial aspect of pediatric cancer care through making sure that even the children that die have a dignified death. If you ask any terminal patients around the world what they consider as a good death they will say dying at home not in hospital. So we try and discharge these patients when we anticipate that their cancer is incurable and that whichever cancer specific medicine we have been giving is no longer of help. We counsel them about the situation and ask them to go home and continue with hospice care. This is something that we are really proud of because we rarely get children dying on the ward.

I think there are many issues. I must say that childhood cancer is different from adult cancer. The main difference is that childhood cancers are more aggressive to the extent that even when patients seek care early they are more likely to have advanced diseases at the time they come to you. The other difference is that we do not know the cause of most childhood cancers with the exception of burkitt lymphoma that’s associated with malaria and virus infections and Kaposi sarcoma which is associated with HIV/AIDS, the causes of the bulk of other childhood cancers is not known. That means prevention is never our focus because we never know what causes them. Whereas in adult cancers, to make a head way in reducing cases the focus should be on prevention. For example cervical cancer, lung cancer and many other adult cancers have specific causes that are preventable through vaccination and avoiding substances like tobacco smoking. Beyond the prevention the next step is screening and early detection and treatment. The adult model really depends more on public health than hospital based strategies and the challenge we have in Uganda is the majority of patients with adult cancer present late. When cancer has spread to most parts of the body it does not matter whether you are the best doctor in the world, there’s nothing much you can do about such a patient. If the cancer has circulated to the liver, brain, lungs and others, it’s game over in most cases, apart from giving them palliative care.

So the magic model in adult cancers is through prevention, vaccination and public health education. The core to reducing cancer among adults is not in the hospital but in the community.

The dynamic and vibrant team that is here. The Institution has over 80% of its staff that are young in their careers, open minded and very keen to embrace change and make progress. It’s really exciting to be part of the growing institution.

There are two things basically and one is Uganda Cancer Institute is grossly under-resourced. Talk of monetary budget, skilled personnel, technologies and facilities and that can be very frustrating. It is even more frustrating for a person like me who has worked in systems where things are accessible and they work. It is very saddening that many times your attempts miserably hit a brick wall.

That’s a very interesting question because Dr. Joyce who is the substantive head of the oncology section and Dr. Orem the director have talked about this and our mandate is clear. We want to be a world center of excellence in pediatric cancer care, especially serving the East African region and probably most of the Sub-Saharan Africa. Our goal has no ambiguity. It is curing children from cancer and that goal can be achieved within the coming 5 years. Thankfully we have the support of one of the centers that has done it before and that is Texas Children’s Cancer Center in the US. So it’s just a matter of time, resources and commitment and it will happen.

I think there’s a lot of hope in Uganda Cancer Institute because when you look at many countries in Sub-Saharan Africa, Uganda is unique because many countries do not even have a cancer institute or a clear strategy to control cancer. So Uganda Cancer Institute is in a good place because it has built partnerships with very strong institutions such as Fred Hutch Cancer center, Texas Children Hospital. So I think Uganda Cancer Institute is on the right path to becoming a leader in cancer care and treatment in the next 20 years. This does not happen all of a sudden. It depends on administrative structures as we all know it is what is killing medical institutions in our country.