Via modern medical ‘Silk Road,’ Israeli doctors are saving the lives of Afghan kids
Ocular oncologists from Sheba Medical Center work with colleagues in Kabul and Lahore to get children with deadly eye cancer out of Afghanistan for critical treatment in Pakistan
Renee Ghert-Zand is the health reporter and a feature writer for The Times of Israel.
The original Silk Road was a 6,400-kilometer (4,000-mile) network of trade routes that operated from the second century BCE until the mid-15th century. The Silk Road got its name from the valuable textiles transported from China westward through Asia to Europe.
Today, doctors from Israel’s Sheba Medical Center are partnering with colleagues in Afghanistan and Pakistan to create a new “silk road” conveying something far more precious than material goods: Afghan children with a rapidly progressing cancer called retinoblastoma in dire need of life-saving care.
Crossing the border out of Taliban-controlled Afghanistan is not easy, but the eight-hour drive between Kabul, the Afghani capital, and Lahore in Pakistan can mean the difference between sight and blindness or life and death for young children with one or more malignant tumors on their retina. The retina is the layer at the very back of the eyeball that converts light entering the eye into electrical signals that the optic nerve sends to the brain to create the images a person sees.
According to Sheba ocular oncologist Prof. Didi Fabian, the Retinoblastoma Silk Road program has thus far brought 10 Afghan children with the cancer to Children Hospital Lahore for treatment unavailable in their home country. The hope is to bring many more.
The project is currently supported financially and logistically by Sheba Global, the international division at Sheba Medical Center, and by a British nonprofit. The fact that Israel does not have diplomatic relations with Afghanistan or Pakistan is not standing in the way.
“We are partnering with NOOR, the National Organization for Ophthalmic Rehabilitation, operated by the Afghan International Assistance Mission (IAM). They have four centers in the country, but they are not capable of treating retinoblastoma. Even when parents can bring their children to the main NOOR center in Kabul and they are diagnosed with the disease, they are sent home because there is nothing that can be done for them,” Fabian told The Times of Israel.
Israeli, Afghan, and Pakistani members of the Global Retinoblastoma Study Group, an international collaboration of experts on the disease started by Fabian in 2017, decided to take action.
They knew they could not achieve results similar to those in high-income countries, where the disease is almost always promptly detected and curable. But they wanted to make a dent in the dismal situation in middle-income and developing countries, where barriers to healthcare cause survival rates to plummet below 50%.
“Retinoblastoma is considered rare and affects around 8,000 children ages 0-5 a year globally. However, it is proportional to a country’s population and its birthrate. For instance, in Israel, we get between 10 and 15 cases a year, in the UK about 40, and in France about 60. In India there are about 1,500, and in China 1,200,” said Fabian, who is also associated with the London School of Hygiene and Tropical Medicine.
Retinoblastoma is caused by mutations in the RB1 gene in the retinoblasts, or immature retinal cells. There are two copies of RB1 in every cell. There must be a change in both copies of the gene in a retinoblast for a retinoblastoma tumor to develop. Sixty percent of retinoblastoma cases are sporadic, caused when a child is born with two normal RB1 genes but a mutation occurs in both genes in a retinal cell. In these cases, the disease presents in only one eye.
Hereditary retinoblastoma accounts for the other 40 percent of cases. It is passed from a parent to a child, and it can be familial or sporadic. In sporadic occurrences, there is no familial history of the disease. The RB1 gene mutation happens in the egg or sperm before a baby is conceived — a germline mutation — and is passed on to the child. In this situation, the child is born with one copy of the RB1 mutation in all cells of the body. Later, a mutation of the second copy of the RB1 gene happens in retinoblast cells and causes retinoblastoma, with one or more tumors developing in one or both eyes.
The purpose of the Retinoblastoma Silk Road program is to do as much as possible for the approximately 100 Afghan children who are diagnosed annually. The children brought to NOOR in Kabul are evaluated by the Retinoblastoma Silk Road team via telemedicine, and those who are diagnosed in time and stand a chance of being cured are prioritized for referral to Lahore.
Diagnosis of the disease is usually made by a physician following a parent’s noticing a white pupillary reflex, an effect known as leukocoria, in their child’s eye. Normally, direct illumination of the pupil makes it appear red; when there is a retinoblastoma tumor in the eye, the pupil appears white.
“If diagnosis comes too late, or if treatment is not started quickly after diagnosis, the tumor simply continues to grow, and eventually it will escape outside the eye. And if it reaches the brain, that is a death sentence,” Fabian explained.
With treatment unavailable at NOOR in Kabul, the Afghan project team arranges for a travel permit for the child and one or both parents so that they can cross the border to Pakistan. Having crossed, they are met by the program’s driver, who takes them to the hospital in Lahore. The families stay in a “safe house,” as Fabian called it, for as long as is necessary for the child’s successful treatment.
Treatment — all of which Fabian said was available at the Lahore hospital — involves chemotherapy, tumor surgeries, and enucleation (surgical removal of the eye from its orbit) if necessary. The professional team from Kabul, Lahore, and Sheba in Israel decides together on the correct course of action in each case. Chemotherapy can be systemic, intra-arterial (delivered directly into the artery or the blood vessel that supplies the affected eye by inserting a catheter in the child’s groin area), or intravitreal (injections directly into the eye cavity).
According to Fabian, the program will support the families staying in Lahore for as long as the child’s treatment takes, be it weeks or months. The treatments themselves are covered by the Pakistani government.
“It’s not like a single cataract surgery and then you’re back home and everything is well. It’s a long struggle,” Fabian said.
When asked about plans for follow-up for the children once they return to Afghanistan, Fabian said that the program plans to bring them back over the border to Pakistan as needed for several years until it is certain that they are in the clear.
“There are many clinical scenarios, which you cannot always anticipate. In the case of my patients, 90-100% of them need a very long follow-up and need to come back for additional examinations under anesthesia, sometimes with special imaging,” he said.
“If a child has a red eye or tearing or something like that, then yes, there are ophthalmologists from NOOR who can examine the child but if it’s a child that needs to be examined under anesthesia to evaluate the response to treatment, to see if there are any recurrences relapses or new tumors, then he will need to go to Lahore and the program supports that and has taken this into account in our planning.”
It’s assumed that the Afghan team will succeed in getting repeated permission for the families to leave the country. But what if it doesn’t?
“So what is the other option — to not treat them at all?” said Dr. Udi Reich, head of ocular oncology at Shaare Zedek Medical Center, who is not involved in the program.
“Any treatment option is better than nothing,” he said.
Reich surmised that follow-up care involving lasers and cryotherapy could be done in Afghanistan hospitals.
“I would think that they have equipment for this. If not, it can be obtained relatively inexpensively and can be easily maintained. Afghan doctors could receive guidance from the Israeli and Pakistani doctors on how to do the procedures,” Reich said.
Fabian shared that the idea of creating fellowships for Afghan ophthalmologists to train in centers of excellence in Pakistan and elsewhere is under discussion.
“The ideal endpoint would be to have a [retinoblastoma] treatment center in Afghanistan,” Fabian said.
