As a child in Syria, Aber Al Rehman Attar battled an eye cancer called retinoblastoma. Without access to consistent medical care, he eventually lost his left eye, which surgeons removed. After the disease returned in his right eye, Attar was completely blind.
Years later, three of his five children were also found to have retinoblastoma.
However, their vision was saved, thanks to a partnership between St. Jude Children’s Research Hospital and King Hussein Cancer Center (KHCC) in Amman, Jordan. Attar’s 5-year old son, Suhaib, began treatment at 18 months after his mother noticed “something wrong with his eyes.”
“We went to the doctor, found the cancer, and he was transferred to KHCC,” Attar says. “He has completed treatment, and we’re doing follow-up visits to make sure he’s cancer free.”
Although Suhaib’s vision is impaired, his eyesight and his life have been saved. His two other siblings were tested for retinoblastoma during infancy. Their treatment occurred early enough that they avoided vision issues. If the children have no recurrences before they turn 6, the chance of cancer returning is slight.
Same disease, different outlooks
KHCC is a regional partner for St. Jude Global, the hospital’s initiative to transform the care of children with cancer and blood disorders worldwide.
“St. Jude Global allows us to harness talent and resources across St. Jude and around the world, developing strong regional networks that are focused around education, capacity-building and research,” explains Carlos Rodriguez-Galindo, MD, director of St. Jude Global and executive vice president. Capacity-building entails creating an infrastructure to ensure that all children have access to quality care.
An early diagnosis of retinoblastoma in the U.S. often results in successful treatment, with little or no lasting effect. But patients in the Middle East may have to travel hundreds of miles to a hospital not equipped to treat a serious illness, much less a cancer diagnosis.
This reality is why the partnership between St. Jude Global and KHCC is so important, according to Yacoub Yousef, MD, an ocular oncologist and surgeon at KHCC. The program originated in 2003 with Ibrahim Qaddoumi, MD, of St. Jude, and ophthalmologists Ibrahim Al-Nawaiseh, MD, and Mustafa Maher, MD, in Jordan.
Although the partnership has grown under the leadership of St. Jude surgeon Matthew Wilson, MD, he attributes its success to “the two Ibrahims” (Al-Nawaiseh and Qaddoumi) and their passion for improving care for children in the region.
“In short, the Jordanian retinoblastoma program is inspirational,” Wilson says. “If not for their partnership and passion, the program never would have started. Retinoblastoma care in Jordan never would have been centralized, and we would not have witnessed the precipitous drop in retinoblastoma mortality from 40 percent to 3 percent in two decades. As I reflect back on my career in treating retinoblastoma patients, this may be the pinnacle.”
Up to date
Yousef estimates KHCC sees 14 or 15 retinoblastoma patients per week, coming from across the Arab world, including countries where previously functional health systems have collapsed, such as Syria and Iraq. St. Jude Global has initiated a program for displaced children with cancer in Jordan, a country with the second highest number of refugees per capita in the world.
“St. Jude Global assists health care professionals and patient advocates in these Middle Eastern countries in building sustainable networks that optimize equitable access to quality care for children with cancer,” says Sima Jeha, MD, director of the East and Mediterranean Region for St. Jude Global. “Childhood cancer is largely curable, but the treatment is complex. While a Syrian child with cancer could have received appropriate care before the crisis, the diagnosis of cancer is equivalent to a death sentence for a displaced child.”
Before 2003, patients like Attar had one choice for treatment: removal of the affected eye. If therapy doesn’t begin within days of diagnosis, the tumor could eventually grow and spread outside the eye. Once that happens, the odds increase that cancer will spread to the brain and other parts of the body. Before the KHCC program began, the 40 percent mortality rate existed because patients would wait until the tumor had spread beyond the eye before seeking treatment. That’s not the case anymore. But Yousef is still working to educate patients and their families about the disease.
His message is simple: Diagnosed early, the cure rate is extremely high.
“You can describe treatment in three words now: up to date,” Yousef says. “I’m looking at patients who have the disease in both eyes, but it isn’t due to genetics; it’s due to receiving a later diagnosis. Most patients and families don’t know eye cancer can happen.”
Where hope is reborn
In addition to using social media to promote early diagnosis and treatment, a robust fellowship program allows Yousef to train doctors from other Middle Eastern countries in the care and treatment of retinoblastoma. The therapy parallels that used at St. Jude. The retinoblastoma service has been built upon the principle of twinning.
After completing their fellowship, physicians return to their home countries and teach others what they have learned. KHCC is one of six regional partners that St. Jude relies on to build capacity in the Middle East.
Rawad Rihani, MD, a pediatric oncologist at KHCC, says treating children according to published St. Jude clinical trials has provided the best outcomes for patients. As a result, KHCC has become a regional cancer center of excellence for childhood cancer treatment. By widely replicating this program, the outlook should improve for children throughout the region.
“KHCC is a place where hope is reborn for patients and their families,” Rihani says. “St. Jude was a partner from the beginning, coming to visit the facility and working with our doctors.”
Looking toward the future
To determine the impact of St. Jude Global, look no further than Attar’s family. Lack of treatment options years ago resulted in his complete loss of sight. But early detection and treatment means his children have not only retained their vision, but have better chances for living normal lives.
“We can understand the disease and create better treatments for the future,” Yousef says. “You start in your house and you improve your home. Then you can help your neighbors, your city and country.”