The hospitalization of Sina Alikhani, a teenager with Spinal Muscular Atrophy (SMA) in Iran, has once again brought attention to the critical issue of medicine availability and the apparent neglect by the authorities of the Islamic Republic of Iran.
Approximately two years ago, Sina Alikhani gained recognition as the ‘ambassador of SMA patients’ in Iran, following the release of a video where he appealed to the regime’s parliament for access to essential medication for SMA patients.
Through his Instagram page, Sina has consistently raised awareness about SMA, making desperate appeals to draw the attention of the regime’s authorities towards the urgent need for medication. Recently, he shared on Instagram that despite two years and three meetings with the regime’s President, he is still without the necessary medicine.
A video circulating on the internet features Sina on a hospital bed, recounting his plea for funds to provide medication during a protest rally two years ago. His father, Morteza Alikhani, informed the state-run news agency IRNA that some patients’ conditions deteriorate, leading to fatalities, due to the unavailability of medication.
In December 2021, a group of SMA patients’ families gathered in front of the regime’s parliament, prompting its president Ebrahim Raisi to promise a swift resolution to their problems. However, last week, SMA patients protested in front of his office, highlighting the limited distribution of medicine and the regime’s officials’ indifference due to insufficient funds.
Despite promises from senior regime officials, including Raisi, to address medical crises and the country’s drug shortage, reports from regime media indicate severe neglect, with promises remaining unfulfilled.
The regime and its media often attribute health and treatment issues to sanctions. Contrary to these claims, sanctions have not included medicine and medical items, as confirmed by reports. Saeed Azamian, CEO of the SMA Patients’ Association, criticized the Ministry of Health’s lack of a concrete plan, relying only on vague and non-transparent drug localization rumors.
The issue of drug shortage and high treatment costs extends beyond SMA patients in Iran. Dr. Hamidreza Edraki, CEO of Iran’s Rare Diseases Foundation estimates the number of patients with rare diseases in the country at 1.5 to 2 million, with 6,500 registered so far. SMA is considered the most expensive rare disease in Iran.
Edraki notes an increase in the number of rare diseases, from 422 to 433 types. Ramek Heydari, CEO of the Society for the Support of Dystrophy Patients highlights ‘many families forced to migrate to countries offering free services for dystrophy patients.’
Patients with rare diseases have repeatedly protested the subpar treatment in trustee institutions and regime organizations. A few years ago, protesters accused the regime’s Ministry of Health of halting medicine imports, citing the short life expectancy and high costs associated with these diseases.
In addition to specific drugs, access to painkillers and occupational therapy, vital for improving patients’ quality of life, is restricted due to exorbitant costs. Each occupational therapy session in Iran costs between 500,000 to 700,000 tomans, an expense many families cannot afford, limiting the number of sessions for patients.
