Using the example of one-year-old Harper Hanki from Canada, it becomes clear that the project may not necessarily have to be morally reprehensible – after all, she has hit the jackpot and will receive the probably life-saving drug from the manufacturer free of charge. But how does the highly controversial “drug lottery” run by Novartis and can such an action be fair in any form? At the beginning of November, the parents of one-year-old Harper Hanki posted on Instagram that they had won the prize for their sick baby. The Swiss biotechnology and pharmaceutical company Novartis contacted her to give her child a drug worth the equivalent of 1.8 million euros. This was preceded by the parents’ participation in a kind of “medication lottery”. Little Harper suffers from a rare spinal muscular atrophy (SMA).
Health insurance companies do not cover the treatment
To date, very few health insurance companies have taken on the treatment of this rare disease. The decisive factor for this is likely to be the amount of treatment costs. The necessary treatment with the drug called Zolgensma developed by Novartis AG costs in Canada, for example, 2.8 million CAD, which is the equivalent of around 1.8 million euros. This sinfully expensive drug is supposed to replace the defective gene that triggers muscle wasting in the sick. While the drug has already been approved in the USA and Europe, the approval process is still pending in Canada.
Spinal Muscular Atrophy (SMA)
This is a type of muscle wasting that is often fatal. As a rule, the extremely rare disease is diagnosed at birth or in the first few months after birth. The spinal muscular atrophy attacks both the breathing and the muscle tissue of the sick baby. If the disease is not diagnosed and treated promptly, the majority of patients will die within the first two years of life.
Novartis is holding a “Drugs Lottery” at the beginning of the year
At the beginning of the year, a number of media reported on the pharmaceutical company’s controversial idea of giving away the life-saving drug in a kind of lottery. At that time, Novartis AG stated that it wanted to provide a total of 100 treatments with the multi-million dollar drug Zolgensma free of charge. In order to ensure the greatest possible fairness, the company has announced that it will raffle all Zolgensma treatments. With this project, the company received a lot of criticism.
Parents of the sick Harper Hanki overjoyed
Amanda and John Hanki are the parents of the sick Harper Hanki from Canada. At the beginning of November they posted on Instagram that Novartis AG had contacted them and wanted to provide their daughter with the life-saving dose of medication. The concerned parents had previously started a crowdfunding campaign themselves in order to be able to buy their child the life-saving drug. Over a period of several months, the parents managed to collect a total of 272,000 CAD – an impressive amount that unfortunately would not have been enough to buy the drug, which was more than ten times as expensive, for around 2.8 million CAD. The parents will no longer need the donation because Novartis will provide them with the drug free of charge. According to the current plan, treatment for Harper will begin in a Calgary hospital in the next few days. Amanda and John Hanki let their feelings run free on Instagram and at the same time thanked all supporters of the crowdfunding campaign:
This week we won the lottery to save Harper’s life. That all SMA families dream of. (…) Now we can take a deep breath and celebrate!
Donations should flow into research
Since the parents of one-year-old Harper Hanki will no longer need the donations from the crowdfunding campaign, they announced that they want to spend the entire amount on further research into the rare disease SMA. This is intended to support other parents in conquering the painful illness.
“Medicines Lottery” – Morally Reprehensible?
The question remains whether a “drug lottery”, as organized by the Basel pharmaceutical company Novartis, is morally acceptable or not. After all, it is in the nature of things that not every participant can win a lottery. And the participants in this case are parents of toddlers who are emotionally stressed and who fear that their child could soon fall victim to the disease. On the other hand, it would probably not be a satisfactory alternative for all participants if nobody at all received free treatment from the pharmaceutical company.
In conclusion, it can be stated that one can rightly criticize such a “drug lottery”. But it is also a fact that the generosity of the pharmaceutical company Novartis AG will probably save the lives of sick children like little Harper Hanki. Therefore, there are basically no convincing arguments in favor of not holding or banning such a lottery a second time. Nonetheless, it appears to be relatively unlikely that such a “drug lottery” will also be held in Germany in the future. In this country, however, there is also a well-functioning health system, which would usually pay at least for a promising treatment.