Remarkable drugs at remarkable prices

15 January 2013 Last updated at 19:20 ET By Ken Macdonald BBC Scotland Science Correspondent

It's one of the oldest debates in economics: what's the difference between what something costs and what it's worth?

The debate has been given new life by the advent of orphan drugs.

The term was coined in the US. They are "orphan drugs" for the simple reason that they were designed to treat orphan diseases - conditions so rare that only a relative handful of people are affected.

Lesley Loeliger, who lives just to the south of Glasgow, remembers the day she was diagnosed with the orphan disease Paroxysmal Nocturnal Haemoglobinuria - PNH for short. The doctor explained it was a bone marrow disease with a median survival rate of just 10 years.

Its effects were dreadful.

"I was having to be carried up and down the stairs," she says.

"I was having to be dressed and undressed. I just couldn't do anything for myself. Sometimes, when I was so bad, and I was so exhausted I couldn't even turn over in bed."

Since then, Lesley's life has been transformed by an orphan drug called Soliris.

It's an exceptional treatment at an exceptional price. At 250,000 per patient, per year, Soliris is the world's most expensive drug.

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Remarkable drugs at remarkable prices