Expensive Drugs and Lotteries

One of the news items that was circulating over the Christmas break was about a young child and her incredibly rare disorder that if not treated will cause her death. There is a potential cure (although it is not clear as to whether or not the medication will reverse the damage or just stop the disease from getting worse) - the catch is that the single-dose medication costs 2.1 million dollars (some media outlets reported the cost was 2.1 million, others said it was 2.8 million) for that one dose. The family have raises 1.5 million dollars on their own but they are running out of time. There is another option - Novartis, the Swiss-based pharmaceutical company that produces the drug is offering 100 doses of the medication-free to individuals living in countries where the drug is not approved. The names of those who will get the drug will be drawn by lottery.

The parent must be rather remarkable people, who must have an equally remarkable circle of friends and family. Raising 1.5 million dollars is no small feat. Their courage to keep on fighting is impressive. No parent hearing their tale could not help but to feel empathy and if some of us are honest, just a little prayer of thankfulness that our children were healthy. It was, of course, no accident that the above story was released around Christmas. It was written to tug at our heartstrings. It certainly had that effect on me. But in spite of my feelings for the family - I saw another story that needed to be explored.

Novartis, if someone bothered to ask them as to why the medication was so expensive, would state that the cost of researching and then finding cures for some genetic or rare illnesses is so expensive that companies need to charge exhorbinet prices to recover their costs. Research can be expensive. However, the company is offering a 100 doses for free. Their donation on the open market is worth 210 million dollars. The company clearly expects the profits from this drug will be so great that they can afford to write off that amount of money and still generate countless millions of dollars for their shareholders. They are making the offer only to families who live in countries where the drug has not been approved. Why else would Novartis make this condition other than to have pressure applied upon those countries to approve the drug and thereby increase their sales.

The lottery is a blatant attempt to increase their profits. It is shameful that any company would apply pressure on families, communities and the country to pay for a drug that is so over-price as to be unaffordable to all but the riches of individuals and indeed the most affluent of countries. This sort of emotional blackmail should be against the law - it is certainly against any moral standards a reasonable person would apply. It is well past time when countries, collectively refuse to pay these prices.

It is perhaps worth knowing that the CEO of Novartis earned 10 million dollars in 2018 (https://www.fiercepharma.com/pharma/compared-jimenez-novartis-ceo-vas-narasimhan-gets-smaller-2018-paycheck-after-cohen-scandal)