Brainstorm Health: Stephen Hawking and ALS, Theranos Settlement, U.S. Health Spending

Stephen Hawking, the celebrated physicist, passed away at the age of 76 early Wednesday. Hawking will be remembered for his research into the very fundamentals of the universe, including the nature of gravity and black holes (as well as his role as an eloquent scientific emissary to the public). But a key part of his story centers on the disease which likely claimed his life—amyotrophic lateral sclerosis (ALS), also known as Lou Gehrig’s disease.

ALS is a nasty neurological ailment without a cure to date that affects about 12,000 to 15,000 Americans; it eats away at the body’s ability to voluntarily move muscles, eventually sapping essential functions like walking, talking, eating, and breathing. Hawking was diagnosed with the degenerative disorder in 1963, when he was just a 21-year-old graduate student. He was given less than three years to live by doctors.

And yet, live he did, for another 55 years and against all odds (though he had to live a substantial part of his life in a wheel chair and speaking with the assistance of a computer). “Most people with ALS die from respiratory failure, usually within 3 to 5 years from when the symptoms first appear,” according to the National Institutes of Health (NIH). Just about 10% of patients live for 10 years or more.

So Hawking is an extreme outlier in this regard. And the precise reason he was able to live with the disease for so long is unclear. “This is fairly untypical,” says Lucie Bruijn, chief scientist at the ALS Association.

The medical mystery underscores how much work is left to be done—and how much remains unknown—in the quest to treat and possibly cure ALS. But there’s also been some incremental progress in the field in recent years. In 2017, the Food and Drug Administration (FDA) approved the first new drug to treat ALS since 1995. (Though it’s important to note that the treatment, Mitsubishi Tanabe Pharma America’s Radicava, is mightily expensive and only treats symptom progression rather than the root cause of the disease.)

Scientists have also made recent breakthroughs into understanding the genetic causes of Lou Gehrig’s. About two years ago, funding from the “Ice Bucket Challenge”—the viral video trend that raised millions for ALS research and was initially met with a big dollop of skepticism—helped researchers identify a gene associated with the disease.

Read on for the day’s news.

DIGITAL HEALTH

Blue Cross Blue Shield expands Lyft partnership. A new Blue Cross Blue Shield arm called the Blue Cross Blue Shield Institute will help expand the insurance federation's partnership with ride-sharing giant Lyft. The initiative will help provide no-cost transportation via Lyft to retail pharmacies like CVS and Walgreens in an effort aimed at patients who have trouble getting themselves to these key hubs in the medical supply chain; it expands on existing Lyft collaborations to get Americans in secluded regions to the doctor's office.

INDICATIONS

Theranos' Elizabeth Holmes settles with SEC, avoids jail time. The ongoing drama over blood testing startup and hobbled unicorn Theranos just crossed into a new chapter. On Wednesday, reports emerged that the Securities and Exchange Commission (SEC) and Theranos founder Elizabeth Holmes had reached a settlement that will oust Holmes from the company she built in addition to a $500,000 fine and other financial penalties (Holmes will be barred from being an officer or director at a public company for a decade, too). Theranos, Holmes, and her chief deputy are accused of inflating claims about "nano-prick" blood testing technology in order to lure hundreds of millions in investments (Theranos was also forced to throw out a multitude of patient lab results over possible inaccuracies). Not included in the punishment package is any jail time. (Bloomberg)

THE BIG PICTURE

Expensive U.S. health care seriously lags behind other countries'. A new JAMA study finds that the U.S. spends nearly twice as much as 10 other high-income countries on health care for considerably more mediocre results. "The Harvard University researchers analyzed data from international organizations on types of spending and performance outcomes between the U.S. and other high-income countries. What they discovered is a country with low health care performance and high costs primarily driven by prescription drug prices, administration costs, and physician pay," writes my colleague Kirsten Korosec. (Fortune)

REQUIRED READING

The 50 Most Powerful Latinas In Business, by Association of Latino Professionals for America

Apple and Google See Consumer Views Soar, by Aaron Pressman

Why the Keto Diet Is Sweeping the Nation, by Chris Morris

Former Equifax CIO Accused of Insider Trading, by Bloomberg