Avedis Hadjian

Growing up with cancer in Iran

How sanctions affect pediatric patients in the Islamic Republic

TEHRAN — In February, Ali went with his mother on a pilgrimage to the Imam Reza Shrine in Mashhad in northeastern Iran. At 15, he is very ambitious. At the shrine, he prayed to become a famous actor like Mohammed Reza Golzar and drive a Maserati. Ali’s prayers also included a trip to Germany. “They have great soccer over there.” He prayed for his health too.

Ali, 15, has been in and out of the Mahak Clinic for the last four years.
Avedis Hadjian

Four years ago, during a soccer match, Ali’s leg became paralyzed. X-rays revealed a sarcoma — a rare type of cancer that develops in muscles and other tissue — in his hip. Then a tumor was found in his head. And then another one in his thigh. Since then, he has been fighting these three tumors at the Mahak Clinic, a nonprofit pediatric cancer hospital in Tehran with state-of-the-art facilities, staffed by some of Iran’s top oncologists.

Childhood cancer in Iran is deadlier than in the developed world, with a mortality rate of 46 per 1 million children ages 14 and under, according to a study published in The Journal of Pediatric Hematology/Oncology (JPHO) in July 2010. The average mortality rate for the same age group in Canada, the European Union, Japan and the U.S. was 23 deaths per 1 million in 2012, according to the World Health Organization. The JPHO study attributed the high mortality rate to “low education or least awareness of the parents, late diagnosis or the low access to the effective treatment.”

Unbeknownst to Ali, his situation ties him to Germany, which — along with the United States and other nations — enforces U.N. sanctions imposed on Iran for refusing to end its uranium enrichment program. These sanctions prohibit the sale or supply of dual-use goods, meaning items that can be used in nuclear weapon programs.

The Mahak Clinic has a Siemens Oncor medical linear accelerator, which delivers improved targeting of radiation and reduces healthy tissue’s exposure, but cannot use the equipment because it can’t get the operating software.
Avedis Hadjian

Two years ago the Mahak Clinic bought radiation-therapy equipment from Siemens, a German corporation, for $1.8 million. But the clinic has been unable to use the equipment — an Oncor digital medical linear accelerator, which enables three-dimensional targeting of tumors while sparing healthy tissue — because the provider has not supplied the original software.

“The supplier is more than willing to supply [the software], but they are bound by sanction regulations,” said Mehdi Khajenouri, Mahak’s deputy managing director. Even if the sanctions broadly allow the shipment of medicine and medical equipment, restrictions on financial transactions can make such exchanges virtually impossible. 

Siemens has not said whether sanctions are what is preventing the software transfer. “The dealer decided to connect our linear accelerator Oncor to a third-party IT product [alternative software for the machine], which seems to be the root cause for the operational issues,” said Matthias Kramer, a company spokesman. “Due to that, our possibilities to help are limited, since the third-party IT product would need to be adjusted. We are in close contact to our customer to discuss how we could help in this situation.” 

Because it has been unable to obtain the original software, Mahak has been forced to look for third-party alternatives. None of those, however, have worked properly. Without the original software, the linear accelerator has limited applications and works just like a regular radiotherapy machine — in other words, without the 3-D capability to attack tumors with enhanced accuracy.

According to a report published on the Iranian news site Khabar Online in October 2012, at some point 50 lifesaving drugs were unavailable in the country. Medicine shortages exacerbate what is already a stressful situation for families with a cancer patient and are compounded by high inflation rates — more than 30 percent annually — and a devalued currency, the rial.

Ali’s father has lost his job twice since October, first at a shipping company and then at a taxi agency, because of his frequent leaves of absence to visit or assist his son. Still, Ali’s mother said, “We have been fortunate,” explaining that Mahak underwrote the entire cost of her son’s treatment and hospitalization over four years.

A psychologist who works with pediatric cancer patients in Tehran remembers a mother and her 11-year-old son whose initial cheerfulness slowly mutated into daily arguments between them as his health deteriorated. The mother’s patience began to wear thin as the difficulties caused by the disease compounded marital problems. The woman became a nervous wreck. “She kept blaming her kid for her problems with her husband and her life,” the psychologist said, speaking on condition of anonymity.    

You can’t always substitute the original medication with generics. You sometimes have to increase the dosage in order to get results.

Mehdi Khajenouri

deputy managing director, the Mahak Clinic

But sanctions may not be the sole reason behind the shortages. In December 2012 then-President Mahmoud Ahmadinejad fired Health Minister Marziyeh Vahid Dastjerdi, the first woman to hold a Cabinet position in Iran, for saying that only a quarter of the $2.4 billion set aside for medicine imports was provided in 2012. “I have heard that luxury cars have been imported with subsidized dollars, but I don’t know what happened to the dollars that were supposed to be allocated for importing medicine,” Dastjerdi declared on state TV.

Human Rights Watch (HRW) has followed the issue of medicine shortages in Iran closely. According to Faraz Sanei, an Iran researcher for HRW, “We have also reached out to the Iranian government, without success so far, to better understand the extent to which other factors … may have played a role in reducing access to medicines and medical equipment.”

A pharmacist reviews his stock in Tehran. Sanctions have restricted the availability of certain drugs in Iran.
Avedis Hadjian

A doctor who was involved in preparing the pediatric cancer report for the JPHO and asked to remain anonymous said that on a recent trip to Iran, colleagues told him about a shortage of anesthetics and other medication. “You can never pinpoint a single death cause in the case of cancer, but lack of access to medication certainly increases the risks,” he said.

Khajenouri concurs, saying, “You can’t always substitute the original medication with generics,” which often are of inferior quality. “You sometimes have to increase the dosage in order to get results.” That, however, creates more side effects, which is particularly bad for children, who are more vulnerable than adults.

Thanks to the resourcefulness of Mahak oncologists — who made do with the lack of software and therefore less effective equipment — all this will soon be in the past for Ali. He said he was getting ready to be released from the clinic and return to school.

A nurse asked Ali to play outside for a few minutes so I could speak to his mother. “So you can talk about what I have?” Ali asked softly, his smile revealing decaying teeth. “I know what I have. I’m not a kid.” He stood up to leave the room. “I’ll be fine.”


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