Risdiplam and WHO model list

Risdiplam and WHO model list

SMA Ireland is part of a global community of organizations that are working tirelessly to increase access to treatments for spinal muscular atrophy (SMA) around the world. Earlier this month, SMA Foundation Poland reached out to us with a proposal to support the inclusion of the treatment risdiplam (Evrysdi) in the World Health Organization (WHO) Model List of Essential Medicines for the treatment of SMA.

We are happy to report that the letter, supported by 21 SMA organizations including SMA Ireland, has been accepted by the WHO and is now available online.

The WHO Model List of Essential Medicines is an advisory document that many governments rely on while ensuring drug availability to their citizens. This is an important step towards increasing access to this life-saving treatment for patients in low- and mid-income countries.

It’s important to note that the WHO requires that all medicines placed on the EML can be produced and distributed at low cost, even in low-income countries where healthcare facilities can often be basic and transport links challenging for patients. To put it bluntly: the WHO cannot recommend governments to procure a product that is only sold by one manufacturer and at an exorbitant price on top of that. Therefore, a large part of the original submission focused on the feasibility of producing generic risdiplam. Interestingly, the estimated cost to manufacture risdiplam is $1.18 a bottle.

The next update of the WHO Model List of Essential Medicines will take place very soon, and a WHO Expert Committee will meet in Geneva on 24 April 2023 to discuss the hundreds of proposed updates. SMA Foundation Poland will be presenting a brief talk to the WHO Expert Committee at the start of the EML meeting.

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