Princess Dina Mired of Jordan: 'There is no time to waste' in fight against cancer

PARIS - Born Dina Khalifeh, she became HRH Princess Dina Mired in 1992 when she married HRH Prince Mired bin Ra’ad Bin Zeid, a member of the Hashemite dynasty. Her father-in-law is the grandson of the late King Hussein of Hejaz, who was also the first cousin of late kings Talal of Jordan and Ghazi of Iraq.

Princess Dina is the first Arab to be elected president of the Union for International Cancer Control (UICC) and has been the director-general of the King Hussein Cancer Foundation (KHCF) for the last 15 years. She is also the mother of a cancer survivor.

As a mother, what was your initial reaction and first course of action after receiving the diagnosis that your son had cancer?

We experienced a multitude of emotions: shock, sadness, helplessness, confusion and mostly fear; fear that we could lose what was most precious to us. We kept asking ourselves: “Why did this happen to us? Did we do something wrong? How did we miss the signs?” There were lots of questions.

After the initial shock, and lots of tears, we quickly realised that we had to be strong and focus on saving our child. So we quickly kicked into action.

At the time of our son’s diagnosis in 1997, there was no cancer care in Jordan; our centre (King Hussein Cancer Foundation) had not yet opened its doors. So we felt very blessed to have had the life-saving opportunity for treatment in Addenbrooke's Hospital in the UK and later at the Dana Farber Cancer Institute in the US.

As we speak today, not every mother has the same chance for her children.

As a mother of a cancer survivor, I plan to work tirelessly to help reduce the global burden of childhood cancers, until a child in the developing world has the same chance to be cured as a child with cancer in a developed country.

What kind of cancer was it? How is he now? 

It was Acute Lymphoblastic Leukaemia (ALL). Alhamdulillah, with God’s grace, top treatment, and lots of vitamin “L” (love), I can now call myself a mother of a cancer survivor.

How has your family life changed since your son's diagnosis? What did you do differently in your own home? 

The first thing any cancer sufferer tells you is that one starts to appreciate the little things; the ordinary acts of simple living. I would say that this is the one bright aspect of a cancer diagnosis, one really understands that one should never take one’s health for granted. And to count one’s blessings.

Now, as a family, we try to have better nutrition, exercise more and smoking is certainly forbidden in our house.

Congratulations on your election as president of UICC. As the first Arab and non-medical professional to have achieved this honour, what is the significance of this achievement?

I'm honoured to have been elected as president of the Union for International Cancer Control (UICC) for the 2018-2020 term. The UICC is the largest global organisation solely dedicated to reducing the global cancer burden, promoting greater equity, and integrating cancer control into the world health and development agenda. It is comprised of over 1000 organisations from 162 countries, making it the largest cancer-fighting organisation in the world.

As upcoming president of UICC, what is your vision for your presidency?

Coming from the heart of the developing world, and having led the King Hussein Cancer Foundation (KHCF) as director general for 15 years, I have extensive proven experience in addressing the challenges of cancer, and more importantly, in finding practical solutions that can improve cancer care and control in low and middle-income countries.

With 80 percent of cancer deaths worldwide expected to be in the developing world, there is no time to waste. We need to work together to make sure that everyone has his or her rightful chance of a cure. No individual should have to watch his or her loved one die just because they live in the wrong hemisphere.

UICC has a very strong membership base of not only credible and talented institutions, but also most importantly, members who are utterly dedicated to fight for cancer control equity in the world. I will work to strengthen this valuable synergy in order to find solid practical solutions to help bridge the gap in cancer control between countries in the developing and developed world.

As president-elect for 2016-2018, what is your first order of business?

My first order of business will be to meet formally with the current president Professor Sanchia Aranda and CEO Mr Cary Adams to understand the operational perspective of my role, and to, together, decide my first priority as to where I can add value in the global fight against cancer.

What has been your highlight here at the 2016 World Cancer Congress in Paris?

Even before I arrived in Paris for the 2016 World Cancer Congress, I was impressed by the high quality of the programme and opportunities of shared learning. This event is extremely important, as it brings together all spectrums of the global cancer community to work together in coordinated cancer control efforts.

Of course, the big highlight for me was being elected as president-elect of UICC. I was very honoured and very happy for this appointment, but I also appreciate that with the role comes a lot of responsibility. I want to share my own stories and successes, as well as tribulations, as part of my new convening role.

You led KHCF for 15 years, what was your proudest moment while working there? 

Yes, I led and established all the core work of the KHCF from 2002 until June 2016, transforming the non-profit into an internationally known brand and leader not only in Jordan, but also in the global movement for people affected by cancer. So it’s really like my baby. My proudest moment therefore is really seeing how this “baby” has grown to become what it is today. I couldn’t choose just one a specific moment; it is the continued growth of this baby, from its delivery to adulthood and maturity.

You are known to be a fierce advocate against tobacco. You mentioned in particular how shisha is fast becoming the “new cancer” invading the Arab world, especially affecting women. How can we make smoking in that social setting less appealing?

I think the number one thing to do is demystify the myth. If you go to Jordan, or anywhere in the Middle East, and you ask someone if they smoke, they will say “No, I don’t smoke,” and then you ask them if they smoke shisha and they say “Yes, I do.” There is a complete lack of awareness that shisha is not only as harmful as tobacco, but that it is even more so. Did you know that a shisha is equivalent to three packets of cigarettes in a session?

We have a lot of work to do in challenging this myth. To do this, we need solid research to back us up. In the past, the Western world did not put in extensive research on the harmful effects of shisha. This is because, at the time, it had not reached their shores. However, now that it has reached the Western world, as it is seen as an exotic activity, research has doubled. We now know that shisha has many cancer–causing chemicals including benzene which is directly linked to leukaemia.

What inspires you to continue battling for this cause? What is the most valuable lesson learned from this experience?

You always feel that when God puts you on a path it is for a reason. With my title as a “princess” comes great responsibility. God blessed us and gave me my other most important title, that of "mother of a cancer survivor”. I am privileged to be in a position to help other parents who love their children just as much as I do.

The most valuable lesson is that we can all contribute in the fight against cancer. Whether one fights tobacco, donates for cancer research, contributes to treatment costs for an underprivileged patient, or helps promote healthy living. We can all do something individually and as a community.

How can mothers and teachers prepare children to understand and cope when their sibling is battling cancer? 

When my son was diagnosed with cancer, my daughter was only four years old, so it was very tough on her. Even though we were very lucky to have a close family who supported us. My daughter was too little to understand the situation. When something was happening to my son, I had this look of fear and panic, which she’d not seen before. It confused and upset her.

At the end of his treatment we were in the US and were coached on the huge effect cancer has on siblings. It’s very important for the whole family and the school to be told about how to recognise the suffering that siblings go through. There is now lots of research and great advice on how to talk to children and siblings about cancer. Speaking to children is an art in itself, but in such an important situation as a cancer diagnosis, I’d urge parents to seek advice so that they know how, when and what is age-appropriate to discuss.

How is the government ensuring that Jordanian cancer survivors maintain a healthy quality of life?

In Jordan, we have made some significant progress in supporting cancer survivors, particularly with our survivorship programmes. Jordan is also working hard on spreading awareness on the importance of prevention and on following a healthy lifestyle. Some positive steps are being taken, but there is still more to be done. The biggest challenge for now is the scourge of tobacco and shisha that are suffocating our community in thick black clouds.

We still need to implement smoke-free public spaces, impose more taxes on cigarettes and protect our children from tobacco companies who are bent on making them their everlasting new customers. We are working with the government to help achieve a smoke-free Jordan inshallah (God willing) in the near future.

Full disclosure: Jasmine Bager is a media grantee at the World Cancer Congress in Paris, France. The UICC paid for her trip to attend but all of her reporting was independent.