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People With Rare Conditions Deserve Medications
But are pharmaceutical companies abusing “Orphan Drug” rules?
At one of his follow-up psychiatric appointments, Joey wanted to try a new medication. He had read online that Sunosi (solriamfetol), a medication for daytime sleepiness from narcolepsy, appeared helpful in treating ADHD. I told him that this report was a preliminary study, and that Sunosi had not yet been approved for ADHD. I also reminded him that just last week he had raved about how well Vyvanse was working for his ADHD symptoms. “Well it is, doc, but maybe this will be even better…..”
I’m used to individuals with ADHD craving novelty, and wanting to switch things up. I also know some of the ways that the pharmaceutical industry works to make their products enticing, and to foster the fear that you might be missing out on something even better to treat your condition.
Not only are pharmaceutical companies adept at manipulating prospective patients, they’re also pretty good at stretching government regulations, including “orphan drug” laws. Orphan diseases are those that are so rare that it wouldn’t usually be worthwhile for a drug company to either develop, or bring to market, a medication to treat the condition. Until governments provided financial incentives for companies to create treatments, such rare conditions were effectively orphans, with nobody to help take care of them.
In 2019, the FDA approved Sunosi for narcolepsy as an orphan drug. Many medications designed for one condition can work for completely different ones. An anti-tuberculosis medication, isoniazid, was one of the very first effective antidepressants. So it isn’t much of a stretch that a medication, like Sunosi, that helps reduce daytime sleepiness might also improve focus, decrease distractibility, and help organize thoughts for someone with ADHD.
I’m glad that our government encourages finding effective treatments for very uncommon conditions that might otherwise be neglected. But are patients the primary beneficiaries of orphan drug laws, or are the pharmaceutical corporations?
An exploration of who Sunosi helps now, and whom it may benefit in the future, illuminates how the Orphan Drug Act shapes the decisions of pharmaceutical…
