Family tragedies spur a Ugandan doctor’s commitment to palliative care, blood cancers

A portrait of Dr. Henry Ddungu
Dr. Henry Ddungu is a Ugandan oncologist who helped found the African Palliative Care Association and a doctoral candidate in the Fred Hutch Global Oncology Program. Robert Hood / Fred Hutch News Service

I grew up in what is now the suburbs of Kampala, the second youngest of 10. I was 13 when my father died of cancer. It wasn’t clear to us at the time what kind. It was 1985. Uganda was undergoing a war, so even going to the hospital was a challenge.

After my father died, my mother worked in a rock quarry to support us. I worked there too. I used my vacation and holidays to dig out stones.

I completed school and then moved in with my oldest brother. My mother remained in our family house, where she is today. We’re extremely close.

My brother’s name was William Ssekajugo. We used to call him Sseka. We were also very close. He got ill around 1990. He passed away in 1991, when I was 19.

He had HIV. At the beginning of the epidemic, we didn’t know a lot about how to manage patients. Access to antiviral therapy was not there. Treatment of common complications like tuberculosis was not as clear as it is now, or access to medicine. At some point Sseka had to be moved from his house to my mother’s house. Many would be just left to die.

I wanted to do medicine because I wanted to find some solutions for treating people. Back then, I thought if you became a doctor, you can fix everything. 

‘Is this actually possible?’

But it turned out to be different when I went to medical school [at Makerere University in Kampala]. Patients were dying. And there were so many patients with violent pain and uncontrolled symptoms.

Then around 1994 or 1995, I learned about palliative care. We used to get visiting lecturers. I attended a lecture, and a lady was talking about how they could control pain. I couldn’t believe it.  At the end, I went and said, “Is this actually possible?” After she talked to me, I said, “How can I join? I want to be like you.” She said, “Well, you have to train.”

Of course, I didn’t have the registration money. This lady was so kind. She said you can pay in installments. You’ll get lectures on Fridays and Saturdays. I went to the lectures and kept saying, “Once I get the money, I’ll pay.” Back on my medical ward, I started looking out for patients with palliative care needs. I wrote them up and turned the papers in. I did so well, I got the certificate in palliative care.

In the 1990s, morphine was not easily accessible. Only hospice could provide it. There was also the challenge of acceptability, especially by the clinicians. They wouldn’t believe that you could just give it without causing an addiction.

I’m proud to say that I was part of the team that has changed this, even outside of Uganda. Within Uganda we developed palliative care teams, and the Ministry of Health took over procuring morphine and making sure it could be made available to whoever needed it.

In 2000, I went to school to get my master’s in medicine. After my training, I helped found the African Palliative Care Association. My role was to really spread the news of palliative care in Africa. Quite a number of countries in Africa can now at least access some bit of pain medicine.

‘The Hutch is one of the best’

In the beginning, I was all palliative care. But I also had a passion to look at the profession from the time you make a diagnosis and treat patients and be involved in all of these aspects of care. My interest was in blood medicine first and oncology. I continued doing advocacy work on palliative care, but I wanted to have my hand on patients, not just sit in meetings.

By 2010, I was at the Uganda Cancer Institute. We had by then a program with Fred Hutchinson Cancer Research Center on infection-related cancers. They advertised for a training position. One of the conditions was willingness to travel to Fred Hutch [in Seattle]. I consulted my friend, who lives in Boston. He said, “Oh my God, that’s a prestigious one. The Hutch is one of the best.” So I applied and was accepted.  And that’s where it all started. It has all been good.

My Ph.D. will be in health sciences. I’m looking at finding ways in which we can optimally use this array of products called blood. You can’t compare transfusion in Uganda to what it is [in the U.S.]. For example, in the U.S., when a unit of blood is donated, you separate it into the different components. If someone needs red cells, they get red cells. If they need platelets, they get that, or if they need plasma. We can do that, but it’s a bit expensive in Uganda. Right now, we practice platelet transfusion for our patients with blood cancers but without any really evidence-based confidence that is locally generated. We need to find out what works for us, to see if what works in the U.S. can be the same as it is in Uganda with all the infections we have, or do we need to make modifications.

I have spent 16 months collecting data. Now we’re trying to analyze it. My plan is to have everything for completing my doctorate ready by this year and submit it to the university for consideration.

‘I have to find my way’

Part of my interest in blood medicine is because of my sister’s death when I was 14. I was in [boarding] school, and they came to me and said, “Oh, your sister has died.”  I said, “She wasn’t ill. How come she died?” They said, “She went to deliver a baby and bled to death.” We had a war going on. There was no ambulance. There was nothing. The hospital where she was didn’t have blood. They didn’t have experts to intervene, and she died.

Her name was Joyce Namazzi. She died exactly one year later after my father died.

It so happens that in my family, it’s only me who has gone on to a higher level [of education].  We were two, but I am the only one who is around. At home we have a saying about the wild yam in the forest. Normally when you go to stay in Nigeria or Ghana where they grow a lot of yams, you help the yams find their way. But the one in the forest does it on its own. So I took myself like that. I said, “I have no one to help me. I have to find my way. I have to help myself.”

My mom is 84 now. I see her every week. She is proud of me. I am also proud of her.

Dr. Henry Ddungu is one of Fred Hutch Global Oncology’s fully-funded Ph.D. candidates, with additional funding from the Northern Pacific Global Health Fellows Training Consortium. He also sees patients and serves as director of laboratory operations at the UCI. Upon completion of his dissertation, he will continue to do patient care and research as a leader with the UCI/Hutchinson Center Cancer Alliance.

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