Afra Rafeeq was a 16-year-old Indian girl. Very few people in America or Europe will be familiar with her name. However, in her country she was a very popular face on social networks. She was loved and followed by hundreds of thousands of people, but her fame wasn’t due to wealth, beauty, or controversy: she became famous after posting a video on YouTube asking for help to save her brother’s life.
Afra suffered from a degenerative and often fatal disease called spinal muscular atrophy (SMA). Treatment was inaccessible for her, since a single dose of the drug she would need, Zolgensma, costs $2.2 million. Yes, you read that right: a single dose (which is the full course of treatment). Moreover, it had to be imported from the United States to India.
