Changing the Cancer Landscape in the Developing World

What brought you to cancer advocacy?

Growing up, we had one cancer hospital called the Hope Center (notice the omission of the word “cancer”). We walked past it every week, but we always ignored it because it was so easy to think that we’d never be the people who needed it. At that time, there was such a big taboo associated with cancer that nobody would talk openly about it – and that was my experience throughout childhood. I never even considered cancer advocacy until our son, Rakan, was diagnosed with leukemia in 1997 at the tender age of two. I didn’t choose cancer; it chose my family.

Our battle with leukemia was long and challenging. After Rakan was treated in the UK, we moved to the USA and the cancer returned. My daughter donated her bone marrow and we were lucky – not only that she was a good enough match, but also that we had a strong network of supportive friends and family. When our time in the USA came to an end in 2000, we were dreading going back to Jordan because cancer treatment and care was below average; the Hope Center was tantamount to a morgue. But we had to return and resume our life – and that’s when I was asked to join a new effort to transform the hospital. As a member of the Jordanian royal family, it’s important for me to fulfil my title with public duty; that, and being the mother of a survivor, is why I wanted to join the fight against cancer. I became Director General of the newly named the King Hussein Cancer Foundation.

What did you set out to achieve?

Our first step as the board and management – renaming the hospital – was crucial because people needed to understand that this was a major shift for cancer care in the region. This was no longer a place where people came just to die. Our late King Hussein was the first public hero to appear on TV without the typical Arabian headdress and talk about cancer openly, so the new name was in his Majesty’s honor.

The main issue we had to resolve was that the hospital wasn’t being managed effectively – despite having good infrastructure and fantastic, globally trained medical staff. It was a clear example of how cancer control is not just about medical aspects; it’s also about how you manage the entire process. We didn’t set out to reinvent the wheel; we followed the example of St. Jude’s Children’s Hospital in the USA, because they had a similar structure to the King Hussein Cancer Center. We also gained a Jordanian doctor from the National Cancer Institute, Samir Khleif, who became the Center’s new CEO. I was Director General for 15 years and, thanks to hard work and dedication from everyone involved, the King Hussein Cancer Foundation and the King Hussein Cancer Center became premier institutions of excellence not only in the region, but in the world.

What is the landscape like in Jordan now?

The King Hussein Cancer Center is now CAP-accredited and has the capability and capacity to carry out bone marrow transplantation and genomic testing in specialized labs. Inevitably, however, not everyone in Jordan has the opportunity to receive care at the King Hussein Cancer Center. I would love to see more homogeneity in terms of cancer care quality across the country.

The other thing I would like to see is improved screening. I was lucky enough to lead the Jordan Breast Cancer Program, which helped change perceptions of the disease among women in our country. Many women used to present in the late stages of cancer – but, because of our message that early detection saves lives, we’ve at least halved the number of women who present in stages III and IV. Unfortunately, though, people still have to pay for a test and not everyone can afford that. I would love to see a population-based screening program as part of heavy investment in prevention and early detection. It has been proven that, for every US$1.70 invested in prevention and screening, you get a $7 saving. However, it is very difficult to convince politicians, because this strategy involves a lot of foresight and they focus more on the present. In Jordan – and many other countries – our healthcare system is geared toward communicable disease and emphasizes reaction. Noncommunicable disease is a different ball game and we need to completely reorient the system from the patient perspective to adapt to the new landscape.

Tell us about your role at the Union for International Cancer Control (UICC)…

When I asked myself what I brought to the table before becoming President of the UICC – a position I am immensely proud to hold – two things stood out. I am probably the first non-medical person to be at the helm of such an institution but, given my own experiences, I felt that I truly understood the patient’s perspective. I also come from the developing world, and I thought it was important for the UICC to have someone who had experienced the challenges and inadequacies faced by the places that they were aiming to help.

What I love about the organization is its focus on partnerships and its lack of an ego. The UICC doesn’t want to repeat things that others are doing; we see gaps and endeavor to address them. Although much has been done in terms of global advocacy, it doesn’t mean anything unless it trickles down to the local level – and that’s why we launched the City Cancer Challenge. The initiative encourages cities to form their own executive committees and influence cancer control in their local region. We facilitate and support these groups with strategies, action planning, and finance to help them identify gaps and implement their own managerial structure.

How can pathologists help?

Thanks to modern technology, pathologists can give their time to virtually train people and offer diagnostic opinions for cases around the world without having to travel. Professional bodies must help facilitate this by encouraging – and funding – global work. I also think it would be extremely beneficial to construct an “essential laboratory list” to help labs in developing countries select the most appropriate equipment. I have seen countries waste huge amounts of money buying the most expensive machinery when the staff don’t have the necessary skills and when outsourcing would be cheaper. In my opinion, the main stumbling block for cancer centers in the developing word is effective governance and management. And that’s something we must – and can – improve across the board.