My talk at the WCC was a talk on using human rights law to address cancer prevention and control. I was sharing experiences from Africa, I specially focussed on Uganda as a case study. Of course, given that we had a very limited time I just focussed my presentation on Uganda.

Do you have any case studies from Uganda you would like to discuss?

Yes, I have some case studies and maybe just to really place human rights law so that it’s clear from the beginning. In Uganda human rights law is really elaborated within our national constitution and specifically under Article 24 which is the Bill of Rights. Within this, that’s where you will find the right to life, the rights of women, the rights of people with disabilities. You’ll find all those rights and although the right to health is not explicit in our constitution it can be inferred. Indeed, we have used it and had a lot of success in the country.

Also, human rights law in many countries, and indeed my own country, could be traced within progressive laws, specifically there are countries with progressive laws on cancer. In Uganda, for example, we have a law, a national law, on cancer and it’s the Uganda Cancer Institute Act of 2016. Also we do have patient rights and responsibilities charters, still you’ll trace human rights law there with principles and standards and provisions that, for example, look at accessibility, availability, affordability and quality of services. You’ll find principles such as non-discrimination and prevention of stigma, gender equality issues. You’ll find all those within the human rights law provisions.

In terms of examples of how we have used this, maybe I’ll speak a little about the National Cancer Law in Uganda. So this law creates an autonomous body that coordinates and manages all cancer affairs in the country, including the formulation of policies and standards and guidelines, including oversight for cancer services within public health facilities and also private healthcare facilities, including the decentralisation of cancer services. So there is that overarching body which has the mandate to really provide leadership.

Why is it important? It’s important because then that empowering law cuts out all the bureaucracies related to cancer prevention and control. You find that because of that particular law we’ve seen progressive increment in the budget, in the funds that are allocated to cancer prevention and control from government. Between 2016 and now the budget has increased by more than 60% and partly it’s because we have that autonomous body.

Also we’ve seen in the country, in 2016 when that law was passed we had one radiotherapy machine, cobalt-60, in fact which broke down in that same year. We’ve made some progress, we have six modern machines right now so the expansion of radiation services in the country, because the law mandates this autonomous body to decentralise cancer services, we’ve seen government putting in some money, of course with other development partners, for the establishment of regional cancer centres. As I speak now, we have a regional cancer centre in northern Uganda, we have one in the southwest and there are about three more to be established. Of course that comes with more equitable access to services. Also, previously without this enabling law specialised cancer medications were procured through third parties and specifically the National Medical Stores. Of course, most of the developing countries are still struggling with issues of stock-outs and other supply chain challenges. But this law empowered the cancer institute to be able to directly procure specialised medications like chemotherapy. This means that third parties are cut out, the timeliness is also catered for. But, most importantly, the quality of the medications and it’s addressing equitable access because even the most vulnerable, the most poor person, when they get into the institute and they need expensive chemotherapy, as long as it’s on the list they are able to access it.

There are many other things that have happened because of this law. Of course, the Cancer Institute in Uganda is recognised as the East African Oncology Centre of Excellence that is even giving technical support to the rest of the region, including the Democratic Republic of the Congo. It’s because of its autonomous nature it is able to receive multilateral grants like from the African Development Bank. We’ve seen, again because of that autonomy and no bureaucracies for a government institution, expansion of partnerships and collaborations. So there are quite a number of things that have come with it.

Despite all that, it’s very important that this institution that is mandated is able to balance the clinical work and the policy development. I see maybe that’s where actually there is a challenge, that for a cancer institute that is traditionally focussing on service provision and research and training, I’ve seen that the policy side of things actually suffers.

Is there anything else you would like to add?

Maybe what I did in my presentation, the other important thing, is I elaborated how we have… That was just about national cancer law but I also was able to share how my organisation has used human rights law to advance the rights to health in other areas of health. Specifically, I shared the experience we’ve had around litigation in the area of maternal health. So the country has always had a high maternal mortality ratio and in 2016 our maternal mortality ratio was 336 per 100,000 live births. Before that, in 2011, we actually filed a case in the constitutional court of Uganda, together with two families that had lost loved ones while they were giving birth. Our arguments were that government has failed to meet its obligation of ensuring that there is basic maternal healthcare. We had different arguments – the fact that public healthcare facilities are not supervised, leading to preventable maternal mortality, stock-outs of drugs and supplies. Of course there was also unethical behaviour by healthcare workers, the low budget going to maternal health. So we had all those arguments that we filed in court, together with the two families that we identified.

That was in 2011 and we walked a nine-year journey in court processes and finally, towards the end of 2020, we had a landmark constitutional court judgement in the affirmative with the court agreeing that, yes indeed, government neglected its legal obligation of protecting and the right to health. Specifically, having women die because of lack of basic maternal and obstetric services in public healthcare facilities.

What are the positive things that this judgement brought to Uganda? First of all, this judgement placed maternal health, the right to maternal healthcare and, indeed, the right to health broadly within the constitution of Uganda. We use common law in Uganda so any precedent like that becomes law. So we now know that via that precedent we have the right to health placed into our constitution. Of course, many things have happened. There were court orders, for example court orders asking the Minister of Health to prepare a report on the status of maternal health in the country and submit it to parliament, submit it to court. Again, the court was instructing government, ordering government to increase the budget for maternal health. The court was instructing government to ensure that healthcare workers are well trained, also that lower level healthcare facilities are well equipped to manage maternal healthcare needs. All these things, we saw that in early 2021… We do celebrate positive court judgement but what is most important is that these judgements are implemented to impact on the people they are supposed to impact.

So we officially approached the Minister of Health about this judgement and they wrote back to commit themselves that they are going to implement the judgement, including the orders from the court. What we have seen is quite significant progress in terms of maternal healthcare in the country. In 2021, 2022, the first maternal healthcare audit was done in the country and this was presented in parliament, it was presented to court. The ministry also launched weekly surveillance for maternal and perinatal deaths so there is real-time data every week.  The ministry will know how many women have died, from which locations, from which healthcare facilities, what are the causes of death. They also launched a weekly maternal perinatal surveillance and response system where every week everybody gets on to a virtual call to discuss issues, cases, typical cases of women who have died, with leading clinicians who were in charge explaining why. This is meant to help quality improvement.

The Ministry of Health also launched, this is the second year they are going to hold the National Safe Motherhood conference. So there is quite a lot. We’ve seen an increase in the budget allocation to maternal health, including life-saving commodities like blood. So there is so much development that has happened. But what is most important is that the maternal mortality ratio within the last few years, especially that whole period of that court case and the judgement, has reduced by more than 40%. So it has reduced from 336 per 100,000  live births to 189 in record time. Of course, perhaps there are other factors that have contributed to this reduction but we do think that the court judgement has played a significant role.

So those are some of the things that I was sharing. Perhaps there are lessons for us that we can also use the same approaches. We actually combined litigation with advocacy, mobilising the women to speak about their right to maternal healthcare. So there were real actions from advocacy – women marching to show their support for this case. Also we combined the human rights and public health and gender responsive approaches in this particular case. I think it has given us a lot of value in the country, especially when it comes to maternal healthcare.

So there has been less use of human rights law in cancer prevention and control. Taking examples such as that, I think we can really use the law much more to advance our goals for cancer prevention and control.

I also shared the fact that we had British American Tobacco take the Minister of Health to court against the Tobacco Control Act of 2015. Of course the Minister of Health does not have a legal team, a huge legal team, so, as an organisation advancing the right to health, we decided to actually join the Minister of Health and support them with this particular case. Indeed, the court, the constitutional court, dismissed the case citing the obligation of government to protect fundamental human rights like the right to life, also the right to a clean and healthy environment. So, again, these are ways through which human rights law is being used to advance cancer prevention and control.

There are also other legal and policy frameworks that could be important. In my country we’ve been working on, or government has been working on, the national care guidelines for health and wellbeing to really institutionalise self-care and enable individuals to be able to take care of themselves, to lead in their own health. The guideline currently is focussing on sexual and reproductive health but it’s also focussing on non-communicable diseases. You find that cancer, especially self-testing for HPV, also self breast examination, are approaches that are included in this guideline. That is going to enhance cancer prevention, especially at community and family level.

There are others, currently the Ugandan parliament is debating the bill on assisted reproductive health technology. Of course, this is where we have been able to do a legal review of this bill and give recommendations to parliament that one of the key areas that is important to include in this bill is the issue around cancer. Fertility preservation is not something we have in the country but yet it’s a human rights argument for such a bill, for such a law, that young people in their reproductive age having cancer and being treated for cancer are actually able to preserve their fertility.

So those are the many different ways we are using to really, really utilise human rights law in advancing cancer prevention and control. Also in other areas of health and there are lessons that we can take on for cancer prevention as well.