Amir Hossein Naroi, an Iranian boy, was only 10 years old when he died from thalassemia, an inherited blood disease. The condition is highly prevalent in the southern Iranian province of Sistan-Balochistan, where Naroi’s family lives; tens of thousands of people in the region are believed to suffer from the disease.

It is not an inevitably fatal condition: Thalassemia can be treated with regular blood transfusions and oral medications designed to remove the excess of iron built up in the bodies of patients. For much of his short life, Naroi was able to get treatment. His fate, however, was decided when access to the necessary medicines inside Iran began to dry up in recent years.

In the earliest years of his life, Naroi was taking a specialised drug known as Desferal, which is manufactured by the Swiss pharmaceutical company Novartis. Starting in 2018, however, around the time that President Donald Trump launched a “maximum pressure” campaign of economic sanctions against Iran, supplies of the iron-chelating drug in Iran – along with other medicines used to treat critical diseases – started to become difficult or impossible to access inside Iran, according to local NGOs supporting patients with the disease.

By the summer of 2022, his organs failing due to complications from the disease, including damage to his organs from excess iron in his blood, Naroi passed away in a hospital, surrounded by his family.

According to documents obtained by The Intercept, multinational companies providing drugs for thalassemia and other conditions, as well as banks acting as intermediaries for attempted purchases, said US foreign policy was ultimately causing the problems delivering drugs to Iranians.

Namely, American sanctions against Iran have made the transactions so difficult that supplies of the medicines are dwindling.

The US government is now facing a lawsuit from the Iran Thalassemia Society – an Iran-based NGO supporting victims of the disease – on behalf of Iranians with thalassemia and another inherited disease, epidermolysis bullosa, claiming that thousands of Iranian patients have been killed or injured after foreign companies producing specialised medicines and equipment for these diseases and others began cutting off or reducing their business with Iran as a result of sanctions.

While the US has given assurances that humanitarian trade with Iran will be exempted from sanctions, the lawsuit, which is currently pending appeal after being dismissed, alleges that the large-scale sanctioning of Iran’s banking sector has created a situation in which foreign companies are either unwilling or unable to do any trade with Iran at all.

“The American government has said that they will consider some exceptions for humanitarian aid, but in practice we have seen that there are no exceptions.”

“The American government has said that they will consider some exceptions for humanitarian aid, but in practice we have seen that there are no exceptions,” said Mohammed Faraji, staff attorney at the Iran Thalassemia Society. “We have had communications with countries that export medicines and medical equipment who have clearly told us that we cannot import medicaments to Iran because of sanctions. Banks won’t work with us, and healthcare companies won’t work with us. They are afraid of secondary sanctions and tell us that directly.”

Documents obtained by The Intercept bear out the picture of some companies balking at humanitarian trade with Iran because of the risk of being caught up in sanctions enforcement or because sanctions have closed off legal pathways for transacting with Iran. The communications reviewed, between European healthcare companies, foreign banks and their Iranian counterparties, began in 2018. At times, the messages relayed are explicit: The companies won’t engage in trade with Iran – even to provide lifesaving medicines – due to the sanctions.

The intensity of foreign companies and banks aversion to dealing with Iranians reflects a victory of sorts for sanctions advocates, including hawkish pro-Israel advocacy groups and think tanks like United Against Nuclear Iran and the Foundation for Defence of Democracies. Thanks to their efforts, Iran today is one of the most sanctioned and isolated countries on Earth.

While its government has held on to power and continues to remain aggressive and defiant despite the international pressure, life for ordinary Iranians has become materially worse under the sanctions regime, especially patients suffering from rare diseases.

The letters between banks, drug companies, and their Iranian interlocutors show in detail how the “maximum pressure” sanctions on Iranian financial institutions have blocked even mundane transactions for medical equipment required to treat a range of conditions.

A letter in September 2018 from a Danish manufacturer of urology products, Coloplast, informed its Iranian distributor that “despite the fact that Coloplast products are not excluded by US and/or international export control sanctions, we now face a situation, where the international banks have stopped for financial transactions with Iran. Under current conditions it is not possible to receive money for products sold in Iran.” (Coloplast did not respond to a request for comment.)

Mölnlycke, a Swedish provider of specialised bandages needed to treat patients with epidermolysis bullosa, sent a letter that same year to the head of an Iranian NGO supporting patients with the disease, EBHome, commending the organisation for its work helping patients with the condition.

Despite the approbation, the company said it would not be sending any more bandages to treat Iranian epidermolysis bullosa sufferers: “Due to the US economic sanctions in force Mölnlycke Healthcare have decided not to conduct any business in relation to Iran for the time being.”

A complaint from an Iranian NGO was filed against the company in Sweden in 2021 over the humanitarian impact of its cessation of business in Iran, but the complaint was rejected.

Mölnlycke did not respond to a request for comment.

The denial of these specialised bandages has been particularly dire for Iranian patients. Epidermolysis bullosa is a disease that causes painful blisters and sores to appear on patients’ bodies. Many people with the condition are children whose skin is particularly tender and who require specialised wound dressings to avoid tearing the skin off when bandages are changed.

An Iranian specialist on the disease submitted a testimony as part of the pending lawsuit describing the cases of six young Iranian patients who suffered excessive bleeding, infection and “excruciating, severe pain” as a result of losing access to the specialised bandages produced by Mölnlycke.

The sanctioning of these supplies has at times led to desperate workarounds by foreign governments. In 2020, the German government and UNICEF cooperated to purchase and deliver a shipment of specialised bandages to Iran. Iranian doctors have also been forced to rely on locally produced approximations of specialised foreign medicines, many of which are of poorer quality and have resulted in life-altering complications and even deaths of patients.

Thalassemia sufferers, in particular, have been forced to use a product known as “Desfonac,” a local equivalent which is less effective at treating the disease and carries debilitating side effects not found in the original product. The Intercept obtained communications made in 2018 by local country representatives for Novartis, the company that manufactures Desferal, telling their Iranian interlocutors the drug company experiencing difficulty conducting transactions as a result of banking sanctions.

These transaction problems, local organisations working on the disease say, were the beginning of the end of their own steady access to thalassemia drugs, which must be regularly administered to patients with the disease to be effective.

“We have documented at least 650 people who have died since 2018 when we stopped being able to import medicine.”

“We have been fighting for years to control this disease inside Iran and it is achievable, but the simple reality is that if patients do not get the iron-regulating drugs they need to treat it, they will die,” said Younus Arab, head of the Iran Thalassemia Society. “We have documented at least 650 people who have died since 2018 when we stopped being able to import medicine and over 10,000 who have had serious complications.”

• The Intercept report