Building sustainable access to oncology medicines in low‑resource settings

This new episode of Let’s Talk Cancer, Cary Adams speaks with Dr Jackson Orem of the Uganda Cancer Institute (UCI), a UICC member, about a key driver of equity in cancer care: improving access to oncology medicines in low-resource settings.

Together they explore the current landscape of cancer care in Uganda and the wider region, what it takes to strengthen cancer services sustainably, and how collaborative partnerships such as UICC-led Access to Oncology Medicines (ATOM) Coalition are supporting countries to build the systems, skills, and financing needed for reliable access to quality-assured oncology medicines and diagnostics, to ensure that essential medicines and diagnostics reach the right people and the right time – safely, affordably, and consistently.

Dr Orem is a medical oncologist trained at Makerere University and the Karolinska Institute, and he has led the Institute’s expansion in cancer treatment, research, and international partnerships, contributing significantly to cancer care in Uganda and across Africa.

See podcast transcript below

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Podcast transcript

Cary Adams: Welcome to a new episode of Let’s Talk Cancer, the podcast where we explore the latest developments, stories, and insights in cancer control worldwide. I’m your host, Cary Adams, the CEO of the Union for International Cancer Control, an organisation that unites and supports the cancer community to reduce the global cancer burden. In this episode, we focus on a key driver of equity in cancer control: health systems strengthening needed to ensure that essential medicines, treatment and diagnostics reach the right people at the right time, safely, affordably and consistently. Our guest is Doctor Jackson Orem, Executive Director of the Uganda Cancer Institute, a UICC member organisation and the National Referral Cancer Centre in Uganda. Doctor Orem is a medical oncologist trained at Makerere University and the Karolinska Institute, and he has led the Institute’s expansion in cancer treatment, research and international partnerships, contributing significantly to cancer care in Uganda and across East Africa. UCI also collaborates with the UICC‑led Access to Oncology Medicines Coalition.

Today, we will discuss the current landscape of cancer care in Uganda and the wider region. What does it take to strengthen cancer services sustainably, and how can collaborative partnerships support countries to build the systems, the skills, make the financing required to improve access to quality‑assured treatment and diagnostics for all patients? Jackson, it’s absolutely great to have you on this podcast. So thank you very much for making the time. Perhaps you could just start by sharing a little about your journey in oncology.

Dr. Jackson Orem: Thank you very much for that question. I was one of those who joined medical school during the advent of HIV. That was in the 80s. And then, of course, the 90s, that is when I started practising. One of the clear signs in those days was just wards full of nothing but HIV patients. But by the time I became a practising physician, one of the questions which came to my mind was what about the other conditions? Because I started noticing that alongside the HIV patients, there were also other problems, and the most prominent was cancer. I noticed that we were having a double problem, but the irony is that most of the focus was really on nothing but HIV and the related conditions, be it tuberculosis and all the others. I thought I needed to tackle this other problem as well. That is how I ended up doing oncology for my specialty.

Cary Adams: Well, on behalf of the cancer community, can I say thank you for making that decision so many years ago? We really appreciate it. And of course, the Uganda Cancer Institute is a great organisation. So what is the mandate of the organisation? What actually do you do?

Dr. Jackson Orem: The mandate of the Uganda Cancer Institute, as an agency, I would call it, of the Government of Uganda, is to coordinate all activities related to cancer training, cancer research, as well as care. Actually, that mandate specifically is conferred on the Institute through an Act of Parliament, and that has really helped a lot in strengthening the capacity of the Institute. Most importantly, it has the independence of mobilisation of resources and then also charting clinical as well as policy direction, and guiding the Ministry of Health when cancer is concerned. I think that was done on purpose by our government, given that the priority, as well as most of the funding and support, is going towards communicable diseases and, of course, maternal and child health. That meant that conditions like cancer needed to look for some other innovative ways of gaining support.

Cary Adams: That’s great, it’s important. I mean, we, from a UICC perspective, recommend that all of government are involved in cancer treatment and cancer control. It’s got to be like that from finance, education, trade and agriculture. It’s important that there’s cross‑government support for the ambition to improve cancer control in the country. Let’s talk about Uganda itself then. You’ve got a population of 50 million. What is the cancer challenge that you’re facing there?

Dr. Jackson Orem: The biggest challenge that we are facing is that for a very long time, just like in most developing countries in sub‑Saharan Africa, or in Africa in general, these are conditions that for a very long time were not prioritised. They were not even recognised as a problem. That’s why, in most of the dialects of our people, you hardly will find a terminology that will actually define cancer. So, that means that most conditions that could not be diagnosed in terms of what people commonly know, would only later begin to be thought being cancer. So that leads, in the first place, to late presentation. And that late presentation is not just a result of the patients, but it is also a result of the system itself. Because if a system is focused on other problems and then cancer, all the non‑communicable diseases, come as an afterthought. The diagnosis comes after a very long process. That is one of the biggest challenges. Of course, as I said, if something is not prioritised, that means it’s not planned for, and that means it doesn’t have the resources that it requires. The third issue is coupled to what I said earlier. If there is a condition that doesn’t have a name, that means people do not know. So, there is the issue of lack of awareness. It’s actually a very big factor. In about 2002, only about 3% of the population knew that there is a problem called cancer. But that is changing. I think we are beginning to see a turnaround somehow. As I said, with the increasing level of awareness and then also increasing investment by our government, and also now the collaborative work that is coming up, I think the future looks at least quite promising.

Cary Adams: Of course, if you improve awareness and you get early‑stage presentation, then you have to get them into treatment as quickly as possible. Treatment is obviously more cost‑effective at early stage than at later stage. The issue we see across many sub‑Saharan African countries is the availability of medicines and radiotherapy and things like that. What’s it like in Uganda?

Dr. Jackson Orem:
You have to step a little back and then say, what should have been done to make diagnosis effective and treatment itself effective? You’ll find that the key three modalities that should have been prioritised are surgery, radiotherapy and, to some extent, chemotherapy, and then, if you add to it, palliative care. They should have been well aligned much earlier. What I can say is that it all depends on the different countries. For instance, in Uganda, something that happened, which was the trigger that made our government, as well as institutions including the Ministry of Health, fairly acutely aware about cancer, is that there were earlier research works that were done in the country from the 50s and then the 60s. You do remember very well the discovery of Hodgkin’s lymphoma and stating that this is a childhood cancer. That raised a lot of questions among people in the academic arena.

Then that eventually led to the establishment of the Uganda Cancer Institute. The fact that there was first a lot of emphasis on treatment led eventually to the development of interest in how effective this treatment should be, and then the question of if we put in a lot of money in just treatment alone, what is going to be the impact? That raised now the interest of saying: look, wait a minute, why don’t we try to make everything comprehensive so that we look at a holistic picture? That is why, when you come to the Uganda Cancer Institute, you find that we are doing things a little differently from other countries. In other countries, they continued along that trajectory of looking at just the individual modalities, but we are looking at how can all this work together in a comprehensive manner. One of the most exciting aspects, which I’m really very proud of, is that we have also now thought about how we can include the community.

Cary Adams: From a UICC perspective, where we are focusing on drugs and medicines at the moment because we believe that there’s a shortage of core basic essential medicines for cancer around the world, particularly in low‑ and lower-middle‑income countries, we’re engaging with Uganda and many other countries at the moment, saying how can we help to get medicines in there? I guess if I look at the International Atomic Energy Agency, they’re working on radiotherapy with their Rays of Hope programme, seeing if they can improve access to radiotherapy in countries around the world. I hope that all of those initiatives help you and your colleagues put in that holistic support that you want to put in for patients who are diagnosed with cancer. Let’s talk about diagnostics. Diagnostics often comes onto the table as being a big issue in low‑ and lower‑middle‑income countries. Diagnosing cancers in Uganda, is that a problem for you?

Dr. Jackson Orem:
Actually, that is one of the things we noticed from the onset as being a major problem. We decided that we needed to make sure that we spend some resources alongside treatment on diagnostics. Let me just give you a practical approach that we took. When we went looking for funding for drugs from the government, we noticed from the word go that they were not very keen on putting money into diagnostics, because they thought that a lot of money was already being put into diagnosis for HIV and malaria. What we did was embed what we felt was going to be used towards setting up our own diagnostic system within the budget for the drugs. Actually, it has worked very beautifully because now we couple diagnostics and drug work together. Going back to government, we are stating that the good outcomes that we are beginning to witness are because treatment goes hand in hand with diagnostics. We actually got some support from philanthropic organisations. I think we did get some money through the support of UICC, and we have set up a very nice diagnostic laboratory that now can even do immunohistochemistry and some of the other molecular testing, making life easier for our patients.

Cary Adams: The other challenge is professional human resources: the oncologists, the nurses, the pathologists and so on. We often hear that there’s a real shortage of those skills, and it takes a long time to train them up as well. How are you facing that challenge, Jackson?

Dr. Jackson Orem: As you know very well, earlier, specialists like myself needed to go outside of the country, and it’s usually a very long process, not very easy, and very costly. So one of the areas that we are now investing very heavily in is developing our own training capacity. For instance, for oncologists now, we do have a number of training programmes in all the different areas: paediatric oncology, medical oncology, radiation oncology, and so on. Then the surgical disciplines have also come up with some areas which previously had not even been thought necessary. Now we do have a uro‑oncology fellowship and also a head and neck fellowship because of the demand. For nurses, we are trying to develop similar programmes, as well as for the other supportive staff. What is key is to make sure that there’s specialisation in all the areas and then making sure that there is good coordination so that we have a truly multidisciplinary team. One recent addition we have made is ensuring that patients themselves are aware of everything going on. It’s not just communication among the different specialty specialists, but the patients should also be knowing what all this means as far as they’re concerned. There’s a growing awareness about the need for patient navigation, and we have been working with the American Cancer Society to develop a very unique patient navigation programme.

Cary Adams: I’m a great admirer of the American Cancer Society. They have done tremendous work in cancer, not just in America, but around the world, over many decades. Thinking more broadly, Jackson, we’ve talked about Uganda. What about the challenges faced by the region itself? Are there any key things you think the international community should know that Uganda and other countries in your region are facing?

Dr. Jackson Orem: The first one that comes to mind immediately is the current instability in a number of countries around us. There is lack of functioning government, and the worst affected sector is health. If health is affected, you can imagine what the plight of cancer patients would be. A good number of the patients who are coming to Uganda, and in particular to the Uganda Cancer Institute, are actually coming from that background, be it from Congo, Sudan, and of course many other countries. The other issue is that even in times of stability, and even when countries are developing, there is still a need for capacity in cancer care. I really want to give credit to leadership in our region, the East African region, where we have the regional bloc called the East African Community. Our leaders decided to approach non‑communicable diseases together and developed a model they call Centres of Excellence. Each country in the region was encouraged to develop a comparative advantage, and then take the lead in that area for the whole region. We were privileged that, because of the long history and some of the work already done in Uganda, and the approach that we are taking, the Uganda Cancer Institute has been designated as the East Africa Centre of Excellence for oncology and cancer medicine. Our role is to help develop best practices in cancer registration, cancer materials, and guidelines for early detection and treatment. We then share these with other member states and also provide training opportunities. The fellowship training programmes I mentioned earlier are quite popular within the region. We have students coming from Tanzania, Kenya, Rwanda and Burundi. Right now, I do have trainees coming from as far as Malawi, some are coming from Cameroon, from Congo. The borders are not really a limitation, because the problems are quite similar.

Cary Adams: Jackson, we’re getting to the end of the podcast, but I have to ask: you explained beautifully how, in the 1990s, you were the exception, choosing oncology while others focused on infectious diseases. You are now a leader not just in Uganda, but in the region. Tell me, what do you think about that career choice?

Dr. Jackson Orem: Well, yes, I think I would say that if I were given the chance to go back and make the choice again, I would do the same. It was the right thing to do, and I’m very proud of it. I can see that at every step there has been some outcome that I can point to and say, yes, this has come as a result of this decision. I think it added very beautifully to the earlier work that was done, especially here at the Uganda Cancer Institute. You remember some famous names like John Ziegler and others. These were big names, and one good thing they did was build foundations. I feel very privileged to be continuing to build on those foundations. The country is the beneficiary, and not only the country, but the region, because what is happening at the Uganda Cancer Institute is exemplary and can be replicated. Our doors are open for colleagues from the region to come and learn from it.

Cary Adams: Well, Jackson, thank you very much for inspiring us with your story. It’s been fantastic to talk to you, and I wish you the very best in everything you do in the future. Thank you very much indeed.

Dr. Jackson Orem: Thank you. Thank you very much.

Cary Adams: Thank you for listening to this episode of Let’s Talk Cancer. If you like this podcast, please give us a rating and subscribe for more content every month. And if you want to know more about UICC’s work, visit UICC or follow us on social media. The topic of access to medicines and others covered in this podcast are integrated into the UICC World Cancer Congress, which is taking place in Hong Kong. If you’re interested, register and come along to talk to me and my team about the challenges you see in your country. Thank you very much for listening, and I’ll see you again soon.