It seems to me orphan drugs are something of a luxury rather than an essential for society at large.
It depends what you define as an essential or a luxury.
Is reducing pain in arthritic knees by 40 % (Paradigm’s Zilosul) an essential?
And is it a luxury to improve the lives of cancer patients (e.g. AbbVie’s Imbruvica - approved), restore sight in those with inherited retinal disease (e.g. PYC Therapeutic’s VP-001 – in development) or finally allow a Rett girl to speak, read and write (the hopes of one mother whose daughter participated in an earlier trial of trofinetide)?
Also, if society at large matters more than minorities, does this mean that governments should have just let COVID rip through the community. Should they waste billions of dollars on chasing a vaccine? After all, only a small minority die. And why not hasten the exit of those in nursing homes who are using up massive financial resources (each costing the government $60,000+ p.a)? After all, they no longer contribute to society at large. Or should we deprioritise those on NDIS packages, who can cost the system $100,000 p.a?
The ethics rabbithole....
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