People with Rare Diseases Are Humans, Not Commodities


If you keep up with CF research, you may have seen the news about Phase 3 of the triple combination Vertex therapies. In these results, patients had a robust lung function boost after trialing a triple combination therapy treatment. More importantly, these results were tested in a broad population of people with CF, meaning the upcoming therapy may be accessible to the largest population of people with CF yet.

While these results are worthy of celebration, there’s another element to this news to consider — business entanglements.

Since CF is considered a rare, orphan disease, its research money is delegated differently than diseases that affect millions of people. There are financial incentives involved in CF research investment, but at the end of the day, one of the most important things that pharmaceutical companies are concerned about is fiduciary responsibility, meaning they must ensure shareholders benefit from their money investment strategy.

This is how businesses work: Shareholders give businesses money by buying shares, which the business then reinvests with the hope of turning profits for themselves and the shareholders. I’m sure I’m not saying anything groundbreaking that most people don’t already know. Pharmaceutical companies are businesses, and developing therapeutics is a business venture. Beneath the surface, though, there’s something darker.

The United States’ healthcare system is deeply damaged in more ways than one. There’s a movement to remove pre-existing condition protections while healthcare costs simultaneously skyrocket. We also have poor morbidity and mortality rates, especially for women giving birth, which is a shame, considering how wealthy the U.S. is. Atop all of that is the dilemma that business interests dictate most medical research. Whenever results are announced about a medication that could benefit the CF community, my mind immediately rushes to two questions: Is this good enough that the shareholders will be happy? Will they be able to turn a profit off of this?

In our world of healthcare, it’s easy to feel like a commodity. This isn’t to say I’m not thrilled with the medications that have come to market for people with CF, including myself. This is also certainly not an attempt to smear all the hardworking scientists, doctors, volunteers, and so many others who sacrifice countless hours of their time to develop better therapeutics. After all, I am a scientist and work closely with many CF researchers and the Cystic Fibrosis Foundation.

I’m not really sure this is a sentiment most people with CF even share; it’s just how I feel when I worry about the potential for a company to make a treatment profitable enough for continued development and distribution. The point is that I involuntarily have a chronic, rare disease that relies on important medicines developed within a framework that has also made me feel commodified and less humanized. It’s a strange feeling. I’m well aware of how important these treatments are! I’m not even sure if most of the medication I’m on would have been developed under a different framework. But it’s also a painful reality that money is the root of why these therapies have come to fruition.

Business people and researchers: All I ask is that when you look at people with CF, please see us as humans, not commodities.

Follow Tré at his humbly named website www.trelarosa.com.

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