Diagnosing the Appeal of Elizabeth Holmes and the Claims She Made

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by Sherry Toh |

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For the past several months, I’ve been obsessed with stories about financial fraud by perpetrators of elaborate schemes. Hence, I fell down the rabbit hole of the story of Elizabeth Holmes, the disgraced CEO and founder of Theranos, a startup company Holmes promised would change the face of healthcare with her revolutionary blood-testing technology.

Holmes claimed her Edison device could run hundreds of tests using only a single or few drops of blood. But as former president of the American Association for Clinical Chemistry David Grenache points out in an interview with The Verge, Holmes’ concept was impossible. While glucose tests can be done with a drop or two of blood, the scientific processes are more complicated for other types of tests, and they can vary widely in methodology. A single device simply can’t perform hundreds of them on a miniaturized scale.

On May 6, as two nurses drew my blood for a genetic test to determine the copy count of my SMN2 gene, I couldn’t help thinking of Holmes and the recent limited drama series based on her life, “The Dropout.” I’m used to blood tests as someone living with SMA, but it’s still unpleasant to have a needle pushed into my arm, draining my blood into vials. I wished then that the Edison could’ve delivered on Holmes’ promises, and I reflected on why people might’ve wanted to believe her.

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“The Dropout” frames Holmes in a complicated yet ultimately sympathetic light. Amanda Seyfried portrays Holmes as having a fierce ambition to create a health information device that would “keep people safe.” Her ambition turns poisonous when she meets failure and refuses to give in even when she should, beginning with a faked demonstration of an early and unstable prototype of her blood-testing technology for pharmaceutical company Novartis. Holmes flies home with a deal worth millions.

That’s how Holmes’ life is depicted in “The Dropout” — a sequence of good intentions, followed by failures, followed by lies, millions invested in Theranos, and the snuffing out of her conscience. Eventually, the Edison’s tests are put on the U.S. market through a partnership with Walgreens.

I’ve seen people wonder if the real Holmes had the same suppressed conscience and good intentions as Seyfried’s portrayal of her. Jurors at Holmes’ trial believed so. They acquitted her of fraud against thousands of patients who received false test results (some of whom had cancer scares), though they convicted her of fraud against investors who poured almost $1 billion into Theranos based on her claims.

However, other questions might have larger implications for the public, such as: What weaknesses in healthcare did Holmes identify that helped her sell her story and her product?

Sure, many would want to invest in revolutionary, industry-disrupting tech — particularly in Silicon Valley, birthplace of Google, Facebook, and Twitter. Except a product wouldn’t be a worthwhile investment unless it solves a problem.

On the drive home from the hospital after my physical assessment, three big things that would make me want to believe Holmes came to mind.

Needles aside, the first would be the amount of blood required for traditional tests. My genetic test required four or five vials, though this varies with the type of test. I was also on my period that day. By the time I arrived home, I was faint from lack of blood.

The second would be cost, for both patients and healthcare providers. Holmes claimed her technology would cost patients much less than traditional tests. My genetic test was over $290 ($400 SGD). I could buy weeks’ worth of groceries with that amount of money.

The third, and most important, would be transparency and accessibility in healthcare information for patients.

My medical assessment on May 6 was part of my pursuit of Evrysdi (risdiplam), an oral disease-modifying treatment for SMA that uses a patient’s SMN2 copies to produce more motor neurons. I’d assumed my doctors knew how many SMN2 copies I had, since medical staff has emphasized to my parents the importance of keeping my records updated since my childhood. Months after my scouring for information about Evrysdi to appeal for a prescription, I didn’t appreciate discovering that my doctors had never tested for this key information.

If the Edison worked and was put in homes as Holmes envisioned, I could’ve tested myself and known more about my body much earlier.

The good news is that healthcare is always evolving. Researchers are working to make blood tests more pleasant and healthcare information more accessible. Progress is bigger than one person.

Still, it’s important to remember Holmes’ story as a consequence of the ails in healthcare, and to work to prevent others like her from taking advantage of people. Prevention, after all, is better than a cure.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.

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