In February 2014, a girl named Porter Louise Vought was born with cystic fibrosis.
By the time she was five months old, her parents were already juggling breathing treatments, medications, chest physiotherapy, and frequent medical appointments. It was a lot for a baby, and even more for her parents, who knew that children born with cystic fibrosis weren’t expected to live much beyond their early forties.
But Porter had something going for her that children born with the disease decades earlier hadn’t: thirty years of scientific progress.
In the 1980s, geneticist Dr. Francis Collins joined the search for the cause of cystic fibrosis. As Dr. Mitch Drumm, a researcher in Collins’s laboratory, later reflected, “If you want to fix something, you have to figure out what is broken first…”
In 1989, after years of painstaking research, Collins and a team of Canadian scientists finally found what they were looking for: a tiny, three-letter error buried in chromosome 7.
The discovery was huge. Still, finding the cause of cystic fibrosis was one thing. Figuring out how to treat it was another.
That would take another thirty years of research, clinical trials, government funding, and donations to the Cystic Fibrosis Foundation. Finally, in 2019, the FDA approved Trikafta, a revolutionary treatment developed by Vertex Pharmaceuticals that addressed the underlying cause of cystic fibrosis and dramatically improved the outlook for people living with the disease.
Forty years of scientific progress and billions of dollars in research meant Porter, and children like her, no longer had to grow up expecting an early death.
“The cure for cystic fibrosis is what happens at the end of decades of science and becomes so fully taken for granted that science is forgotten and all seems obvious in retrospect,” Michael Lewis writes in Blockers. “Had Porter been born when Francis Collins began jumping around chromosomes, she would have died long ago; had she been born yesterday, her parents would need to summon no more than mild concern.”
For Collins, the discovery was “like a glimpse of God’s mind, that we have understood something that God already knew.”
He had experienced one of life’s truisms: persistent effort, over a long enough period of time, creates extraordinary results.
Unfortunately, he would also experience another: fools have many followers; wise people have few.
—
By May 2017, Robert F. Kennedy Jr. had spent years promoting the belief that vaccines caused autism.
Scientists had spent years investigating autism, too. They found links between autism and prenatal infections, and autism and exposure to pollutants. But they could find no link between vaccines and autism.
Still, Francis Collins, now director of the National Institutes of Health, agreed to meet with RFK Jr. and hear him out.
Weeks before the meeting, RFK Jr. sent Collins a list of 94 academic papers that he believed supported his claims that vaccines caused autism.
On the day of the meeting, RFK Jr. arrived carrying a cardboard box of papers as evidence.
“The special weirdness of the performance,” Lewis writes, “was RFK Jr.’s assumption that he could make a thing true just by saying it. As he read through his evidence, a department head would try to point out that it had already been discredited. ‘Don’t interrupt me,’ RFK Jr. would say. ‘I need to get through this.’”
Forty-five minutes in, RFK Jr. was still refusing to listen. Eventually, he stormed out.
Collins followed up with polite notes. After the first, RFK Jr. stopped responding.
As Lewis observes, “The idea that there might be some link wasn’t nuts. What was nuts was RFK Jr. using his family name to secure a meeting on a subject with the world’s leading authorities and then roll in for the sole purpose of informing them that he knew better than they did.”
—
Fast-forward to 2025.
DOGE came in, and Francis Collins was out. Officially, he’d retired. But according to Michael Lewis, Collins had actually been given a choice: resign or be fired for cause.
RFK Jr. was now Secretary of Health and Human Services.
The administration began slashing funding to American universities and restricting collaborations with foreign researchers. Yet $1.6 million was directed to the University of Southern Denmark, for an experiment in Guinea-Bissau, a small country in West Africa.
Guinea-Bissau has one of the highest rates of hepatitis B infection in the world. Without preventive treatment, babies born to mothers with highly infectious hepatitis B face up to a 90 percent chance of contracting the virus. Of those who develop chronic infections, roughly a quarter may eventually die from liver disease or liver cancer.
The original proposal called for enrolling 14,000 newborns and dividing them into two groups. Half would receive the hepatitis B vaccine at birth. The other 7,000 would receive it at six weeks.
Here’s the problem: For these vulnerable newborns, prompt vaccination combined with other preventive treatment can reduce the risk of infection from as high as 90 percent to less than 5 percent. Withholding the vaccine at birth would leave some newborns vulnerable to a preventable disease.
And for what?
The experiment wasn’t designed to determine whether the hepatitis B vaccine prevents hepatitis B. Decades of evidence show it does. Instead, the experiment was designed to investigate…hypothetical harms.
This month, after widespread criticism from scientists and public health officials, Guinea-Bissau’s government officially rejected the experiment.
Had it gone forward, children could have contracted a preventable disease and eventually died. And, as Michael Lewis put it, they “would have died for a cause: proving that RFK Jr. was right.”
Thomas Merton said if we’re incapable of humility, we’re incapable of joy, because only humility frees us from the self-centeredness that takes away from joy.
That was supposed to be the beginning of this newsletter.
But then I found the above stories and thought they were too important, and too timely, not to discuss here, especially in the context of humility. Or in this case, a lack thereof.
The stories speak for themselves about the dangers of arrogance. But a lack of humility isn’t always grand and obvious. It can be perfectly detrimental in our most ordinary moments.
The other night, I wanted to watch a TV show before bed, but something I had committed to earlier had taken longer than expected. I felt myself getting impatient, rushing to get to what I wanted to do.
Then I thought of Merton’s idea: humility is happiness because it relieves you from the burden of selfish desires and self-centered expectations.
Immediately, the frustration melted away. I smiled and thought: How lucky am I to be here, at this moment, right now?
Wow!
By letting go of what I wanted the moment to be, I could finally enjoy what it was.
I know this sounds dramatic over a TV show, but aren’t most of our daily frustrations objectively petty? Life doesn’t go the way we want, and we make ourselves miserable wishing it would.
Leo Tolstoy said, “Life could be limitless joy, if we would only take it for what it is, in the way it is given to us.”
Humility is the key.
It’s the key to learning, to self-awareness, to a sense of direction. To growing and to doing the right thing. To better relationships. To patience and gratitude and selflessness and service. To living in the present, and therefore, living to the fullest. To freedom, to an easy laugh, to a cheerfulness despite it all.
It’s the foundation for all other virtues.
And virtue, as we know, is the key to joy itself.