Patients lose when lifesaving drugs are distributed by lottery

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Image: DraconianRain/Flickr

The first Monday of February marked the inaugural draw in a global game of chance, with the lucky winners receiving free access to a lifesaving drug as their prize. It was the most heartwarming sweepstakes story since Shirley Jackson's The Lottery. You might recall, perhaps from English class, Jackson's story of a quaint raffle in a small village. If you do not, spoiler alert: The prize is getting stoned to death by the other villagers as a sacrifice for the greater good.

Another life or death lottery is now the last resort for Canadians hoping to access the most expensive drug in the world. A single dose of Zolgensma (the trade name for the dubiously pronounceable "onasemnogene abeparvovec") costs $2.8 million dollars. On the bright side, a single dose may be all that's needed to treat a form of the rare genetic disorder spinal muscular atrophy (SMA). As such, it could prove invaluable to those patients who receive it.

However, compounding its price tag is the fact it is currently only approved in the United States (and there only for children under two years of age). For everyone living where Zolgensma is unapproved, which is to say the rest of the world, Novartis, the company that owns the drug, announced it would donate 100 doses for free. It is these doses that are allocated by lottery, distributing the drug at random among thousands of eligible patients worldwide.

Healthcare often raises difficult questions about resource allocation, frequently involving expensive drugs for rare diseases. Provinces are still grappling with controversial questions around which patients will receive Spinraza, another pricey drug for SMA. And all else being equal, a random lottery may be the fairest way of going about the unpleasant task of distributing limited resources among those who might equally benefit from them. But, just as in Jackson's story, the communal benefits of the lottery remain hazy, and its horrific outcome out of place in modern society.

Both the number of donations and the market price are factors within Novartis' control. Regarding the former, it is true that a genetic therapy like Zolgensma cannot be scaled up overnight to reach all possible patients, but the nice round figure of 100 donations worldwide is also untethered to capacity. More important is the cost. If the eye-watering price tag is intended as society's reward for discoverers of treatments for rare diseases, it is worth noting that Novartis itself has little claim to inventing Zolgensma. Novartis didn't do the research; instead, it acquired the drug when it bought out the smaller company AveXis, a deal framed as a "financially attractive acquisition with multi-billion dollar peak sales potential."

In turn, AveXis didn't create the drug either. Instead, it originated with Généthon, a French non-profit. Furthermore, its development has been shrouded in controversy, from manipulated data to side-effects being concealed. Thus, while for the sake of patients it must be hoped the treatment is effective, the drug itself remains a bit of a gamble.

Lastly, while the lottery may be a temporary measure for countries like Canada, where Novartis has plans to gain Health Canada approval, the lottery offers a worrying precedent for elsewhere in the world. According to a Novartis Canada spokesperson, the company designed the lottery as a program "anchored in principles of fairness, clinical need and global accessibility -- meaning a program that serves all markets irrespective of where we have submitted or plan to commercialize."

For countries where Novartis has no plans to commercialize, this means access for patients would remain entirely dependent on the luck of the draw, hardly an ideal model for "global accessibility." While many lower income countries already have the odds stacked against them when it comes to adequate healthcare, seldom has access to medicines been so blatantly dependent on blind luck.

If and when Zolgensma comes to the Canadian market, it will almost certainly be the subject of tense funding battles. Even now, Canadians face further hurdles; at least one Canadian family was unable to enter the initial draw in the first place, as they had not received permission from Health Canada to even attempt to access an unapproved medicine. Given that only very young children are eligible, delays in casting one's lot stack the odds even higher. But while the lottery is far from the only barrier between patients and medicines, it is certainly one of the most overtly disquieting.

When first published in The New Yorker in 1948, Jackson's story was immediately met with a flurry of outrage. When a life and death lottery becomes fact rather than fiction, the response should be similar. Novartis has since issued a press release stating they are reflecting on feedback "and will consider adaptations to the program as we move forward," a far from satisfactory response. Drug companies need to offer their wares at a fair price for everyone, everywhere, rather than letting some patients draw lots for a shot at life while keeping the financial jackpot for themselves.

Adam R. Houston is a PhD candidate in the faculty of law at the University of Ottawa working on access to medicines issues at the intersection of law and health. Twitter: @HealthLawAdamH

Image: DraconianRain/Flickr

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