What Would You Choose? Preserving Privacy Versus Treating SMA

What Would You Choose? Preserving Privacy Versus Treating SMA

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Source: www.pixabay.com

I don’t think it comes as a shock to anyone to say the costs of drugs are too damn high. The rarer the disease, and the smaller the patient population, the higher the cost. Sadly, that’s the economic reality of the pharmaceutical industry. But when the economic reality slams up against the medical reality of patients living with life-threatening and life-limiting diseases, something has to give.

In the case of parents of children with spinal muscular atrophy (SMA)—a horrible disease that causes muscle weakening and degeneration—the medical reality will invariably trump all other concerns, and they’ll move an Appalachian Range’s worth of mountains to save their children. That means making decisions that might seem difficult when you’re on the outside looking in. But how does it look from the inside?

This profile from The Washington Post about Kristen and Jonathan Lasko’s quest to save their son Max offers some insight. It also highlights the pros and cons of pharmaceutical companies’ efforts to offset the gargantuan cost of their medications with generous patient assistance programs.

In the Lasko’s case, the drug in question is the recently approved Spinraza, and it couldn’t have come a moment too soon. At only three years old, Max has been wheelchair bound and reliant on a breathing tube for most of his short life. The breathing tube disqualified Max for the Spinraza trial, so his parents could only watch and wait as the treatment wound its way through the labyrinthine approval process.

When it was finally approved, their joy was tempered by the sobering price tag: The first year of Spinraza would cost $750,000, and each year after that would cost $375,000. For a family with complex, ongoing medical needs, that posed an insurmountable financial obstacle.

So when Biogen, the makers of Spinraza, offered financial assistance that would make the drug attainable, the Laskos jumped at the chance. But it came with a cost: The parents had to sign over authorization allowing Biogen access to Max’s private health information for the vague but sweeping purposes of “patient support services and marketing/other communications.” Whatever hesitation the Laskos had about Max’s future right to privacy—and it’s clear this is something they do think about—took a back seat to the more pressing need of actually giving Max a future.

But this approach does raise some interesting ethical concerns about the nexus of business and philanthropy, as well as the true motivation of financial assistance programs. Ultimately, pharmaceutical companies are in the business of turning a profit, but that’s never going to happen if all their prospective customers are bankrupt. So, absent going bankrupt themselves, pharmaceutical companies are left to haggle with insurance companies about money while doing what they can to attract more customers and cultivate lifelong loyalty.

That’s how we end up with scenarios like the Laskos, where potentially life-changing treatment is bought at the price of potentially opening their son’s medical history for marketing Spinraza. That’s not a judgement on them as parents—as a parent myself, I’d make the exact same decision they did, without a moment’s hesitation.

But it does raise some big questions about the massive costs of bringing drugs to market and providing healthcare for rare diseases. Like, how can we bring those costs down? How do we balance the need for speedy approval of new drugs with the need to ensure public safety? And how can we make sure that pharmaceutical companies and patients both get what they want and need—respectively, healthy profits and healthy living?

On the surface, these two goals may seem totally at odds with each other. But until we find a way to make both sides happy, families like the Laskos will continue having to make those tough decisions…even if they do so with no regrets.


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