Jordan challenges stigma attached to cancer in the Middle East

Twenty years ago the word "cancer" was taboo in Middle East culture. But in 1998, King Hussein of Jordan challenged that stigma by appearing on a live CNN interview without the traditional headscarf, revealing his hair loss from his battle with lymphoma and speaking proudly to the nation of Jordan.

Before 1997, a cancer diagnosis often meant a death sentence for middle- and lower-class Jordanians. If, for example, a patient found a tumor, the family wouldn't know which hospitals to go to or what steps to take. Before the early 2000s, oncologists living in Jordan could be counted on one hand. Fear and hopelessness dominated any discussion of treatment or recovery. Families of cancer patients wouldn't even mention the word cancer.

"People would come in vertical and leave horizontal. People who got cancer, they didn't survive," said Jordanian Princess Dina Mired, president of the Union International for Cancer Control, a nongovernmental organization helping the global health community accelerate the fight against cancer.

But that's changed, and it's still changing. And people such as Mired are largely responsible. The story begins a few years before King Hussein appeared on the live interview.

Raising $360 million for cancer

Speeding through traffic in Jordan's capital city of Amman in 1995, Princess Mired shook a tube of blood platelets donated by a family member. Her father was in the ICU, diagnosed with multiple myeloma, and he needed a platelet transfusion immediately. Recovering from cancer in Jordan required fluency in English (most doctors were trained in English), an understanding of biology to find the right kind of care, plus time and money--all of which were available only to the elite top 4.8%. Mired's father later recovered in a treatment center in England.

Two years later, Princess Mired was in a U.K. hospital with her 1 1/2-year-old son, Rakan. After days of waiting for a blood test, she received the devastating news that Rakan had leukemia. As Rakan received treatment and recovered in the U.S. and the U.K., Mired realized her ability to travel outside of Jordan for comprehensive cancer care was a rare privilege.

"Many children in developing nations don't have the chance to fire a single bullet at cancer," Mired said. "Imagine your loved one has cancer, and someone says we have the magic potion that can save your life, but it's not for you."

In 1997, Jordan's only available cancer care was the Hope Center, established in 1997 by King Hussein. According to Mired, the Hope Center housed cancer-care equipment and a few trained nurses, but it lacked what it claimed to give: hope. Like many cancer centers in developing nations, it lacked organized management.

Knowing she needed to act, Mired stepped up as director-general of the center in 2002, renaming it to the King Hussein Cancer Center (KHCC) in honor of the late king, who died from cancer complications in 1999. Mired purposefully put cancer in the center's title to help remove the fear and stigma surrounding the word. From 2002 to 2016, she raised $360 million, transforming Jordan's cancer care. KHCC is now the only cancer center in the developing world to earn the Joint Commission International's Clinical Care Program Certificate for its oncology program, and it stands as a model for the developing world.

"It wasn't an easy journey," Mired said. "Raising $360 million was unheard of in Jordan at that time."

"We ignited a grassroots movement in Jordan. From zero money to zero programs, the phone never stopped ringing," she added. "Children were bringing us piggy banks."

Today KHCC houses 200 full-time oncologists and consultants and treats more than 3,500 new cancer cases each year. The Center has also earned three international accreditations. Inspired by St. Jude Children's Research Hospital, KHCC provides early detection procedures and holistic treatment with teams of radiologists, oncologists, surgeons, neurologists and nurses. Most important, they've built trust among the Jordanian population that recovery is possible.

Emotional support

Nehad Dabbs is another of Jordan's heroes in the fight against cancer.

Dabbas worked as a middle-class barber in Amman, Jordan's capital city. His uncle was diagnosed with cancer and passed away in 2008. During his treatment, Dabbas would visit him in the hospital and cut and style his hair. Although treatment had become accessible to Jordanian citizens, Dabbas noticed room for emotional support and care for patients and their families.

In 2016 Dabbas met a boy named Ahmad who changed Dabbas' life. Ahmad was sitting forlornly reading a magazine on the salon couch as his friend was getting his haircut. Ahmad was wearing a hat to cover his loss of hair from leukemia treatment. As Dabbas saw all the strands of hair being thrown away as he cut his client's hair, he knew that he had to do something.

"Would you like me to create a wig for you to look like your old hair?" Dabbas asked Ahmad.

"Yes," Ahmad said.

At that moment, Dabbas realized he could cut, gather and use his client's hair to create wigs and give hope. Hareer was born, Jordan's very own version of Locks of Love. Hareer means silk in Arabic, and the NGO collects hair to create natural wigs.

Since its inception in 2017, Hareer has created wigs for 60 children. Each wig takes two weeks to complete and costs $1,000 to make. Debbas styles them by hand, then sends them to a manufacturing company in China to complete, replicating the patient's hairstyle before their chemotherapy treatment.

"I don't sleep, I can't stop thinking of all I could do," Dabbas said. "I give all the wigs for free even if it costs me."

Other similar grassroots organizations have begun to spring up, since Hareer's founding, such as Khasal, which means hair locks in Arabic.

Dabbas collects hair by holding events at local malls, schools and universities, with volunteers offering donors free haircuts. Interestingly, the most common donors are children.

Leen, a cancer survivor, is only eight years old. In 2018 she cut her hair to create a wig for her mother, Maha, who was also diagnosed with cancer.

At university events, some students donate because their immediate family members suffer from cancer; others are hearing cancer patient's stories for the first time.

Dabbas' enthusiasm is infectious.

"I have been telling everyone to come and donate," said Jordanian university freshman Rahaf Faiz. "This is a topic that needs to be talked about more. ... I want to start a creative business which raises money for cancer patients."

In addition to collecting hair donations, Hareer's events play a significant role in tearing down the remaining stigma surrounding cancer in Jordan.

Building connections

"When you let someone who is not sick help with the problem, you are building a connection, said Wedad Saba, a lymphoma cancer survivor who volunteers with Hareer. "It is hard for someone to have this much passion and compassion without having experienced it."

Dabbas dreams of creating community spaces within cancer hospitals with hair salons, libraries, art spaces, English lessons and food donated from local companies. He also hopes to buy a bus equipped with blood donation equipment to take to Hareer's events.

Both Mired and Dabbas believe Jordan's model is replicable in all developing nations.

Noticing how top cancer international organizations lacked representatives from the developing world, in 2017 Mired became the first Arab, non-medical individual to be elected president of the Union for International Cancer Control.

"I felt like they were speaking on our behalf, and you know that we have a lot to say," Mired said. "It is important that we shape the narrative about the developing world. ... Now when I go to the developing world they actually listen to me because they like the fact that little Jordan is like the engine that could."

Reflecting on Jordan's growth in cancer treatment in the last two decades, Mired believes the late King Hussein, who died in 1999, would be proud.

"This is what King Hussein dreamed about," Mired said. "I wish he could see it."