Chapter 15: Real Role Models
On the way to see the source of the Mississippi, Minneapolis was a must stop. I had to see Rachel McMullen.
Rachel and her little sister, Rebecca, were in my psychology class. Rachel graduated in 2011, Becca two years later. Both were born with cystic fibrosis (CF).
Rachel once shared with me about her morning routine. It included her mom thumping her and Rebecca’s chests.
“My morning routine included doing a 30 minute treatment (chest physiotherapy - CPT). The therapy consisted of either wearing a vest that would vibrate or having my parents do percussions on our chests. This was to break up any thick mucus in the lungs to make it easier for us to cough up.
In addition to the CPT, we also had to do Albuterol and Pulmozyme nebulizers. The Albuterol was to open the airways. And the Pulmozyme helped to thin the mucous in the lungs. This whole process took about 30-45 minutes, including set up and clean up.”
This had to happen every single day. When I wake up, I whine to myself about “having” to work out to feel fit.
When I found out that Rachel and Rebecca had CF, I needed to know more. What I learned was heartbreaking.
When I was born, many children with CF didn’t survive past early childhood. When the McMullens were born, making it to 20 was a win.
Improved treatments in the 2000s extended their life expectancy to the 30s or even 40s. Better, but still awful.
I didn’t want to think about it. It didn’t make sense that these vibrant, fun, cool girls wouldn’t get to live long lives.
They certainly didn’t live like they were disabled. Since I never saw their morning routines, I wasn’t aware of their challenges. They never lamented. Never complained. They just lived “normally” and fully. Rachel was a gymnast, Rebecca a cheerleader!
I don’t remember how I first found out about their CF. Maybe a memo from the school’s administration? From their mom at a parent—teacher conference? I’m certain the girls didn’t bring it up on their own.
What I do remember is that when I learned the truth, it didn’t seem real. Just unfair.
Not surprisingly, Rachel and Rebecca both became nurses. Rebecca is a travel contract nurse, currently in DC. Rachel works for the Mayo clinic in Rochester, Minnesota. But since she was visiting her boyfriend in Minneapolis, that’s where we connected for the first time since she graduated from high school.
After catching up at a cool coffee place called Spyhouse, Rachel matter of factly told me about how a cystic fibrosis treatment called Trikafta changed her life. Since it was approved in 2019, not only has life expectancy increased, the quality of life of those with CF has dramatically improved.
With Trikafta, estimates suggest many patients could live into their 50s, 60s, or beyond. Some experts believe that younger patients who start Trikafta early could potentially reach normal or near-normal life expectancy.
Once Rachel began taking two Trikafta tablets each morning and another one at night, her life changed. The morning treatments were no longer necessary and the kid who couldn’t (shouldn’t) run a mile in high school completed a Rochester 5K!
How did I not know about this?! How did any of us not know? Why wasn’t Trikafta’s magic blasted all over the place — the lead story on the nightly news, the front page of newspapers, the cover of Time? How did it not go viral on Instagram, TikTok, and YouTube?
I found a half dozen YouTube videos about Trikafta. None had over 6,000 views. “The Poop Song,” which debuted two years after Trikafta, has been viewed 20 times more.
I get that what’s good isn’t always popular and what’s popular isn’t always good, but come on!
__________
So, who in the heck invented/created/manufactured Trikafta? How? And why isn’t whomever it was at least as famous as Patrick Mahomes, Caitlin Clark, Scarlett Johansson, or Kendrick Lamar? Why don’t they have a gazillion followers?
When I taught, I tried to change perceptions about who should be revered or at least share the pedestal with celebrities.
I had students create “historical role model” cards similar to the sports cards I collected as a kid. On the front was the person’s picture. On the back was a short narrative explaining the role model’s contribution to the world.
Jane Addams, for example.
Jane Addams
On the back of Jane’s card, a student might write, Jane Addams founded Chicago’s Hull House, a place that pioneered social work, advocated for immigrants, fought for women’s rights, promoted peace, and improved urban poverty conditions. In 1931, Jane won the Nobel Peace Prize.
(Side note: I couldn’t leave Chicago without first visiting Hull House. It didn’t disappoint. Strongly recommend!)
Not only didn’t my historical role model cards catch on, I’m not certain most my students thoroughly understood my point — that we honor the wrong people. That instead of worshiping athletes and entertainers, we should be modeling people like Jane Addams and Dr. Barry Marshall.
Dr. Barry Marshall
On the back of Barry’s card: Dr. Barry Marshall proved that Helicobacter pylori causes ulcers, revolutionizing treatment with antibiotics, transforming global healthcare, and earning a Nobel Prize for his groundbreaking discovery. In essence, he cured ulcers!
I figured that behind Trikafta, there had to be a Jane Addams or Barry Marshall. Someone specific to heap praise upon and look up to.
Guess what? There’s no such (one) person.
It was a team effort. I learned from a Chat GPT inquiry that the Trikafta manufacturer, Vertex Pharmaceuticals, does not publicly attribute Trikafta’s development to any specific individuals.
Vertex’s Boston headquarters
The exact team that developed Trikafta remains largely unnamed publicly, as is common in large pharmaceutical companies. The drug was built on years of research involving teams of chemists, biologists, and clinicians working collaboratively over many years.
Although some “notable figures” were given credit for “having an important role in advancing cystic fibrosis treatment,” there isn’t going to be any Marie Curie (radioactivity), Jonas Salk (polio), or Alexander Fleming (penicillin) behind Trikafta.
Even though it didn’t fit with my storyline — that we mix up who should be our real role models — I love Vertex’s explanation that Trikafta exists because, over time, teams of chemists, biologists, and clinicians worked collaboratively.
Is it me or our culture that looks for individual heroes to save us when, usually, it’s a group of brilliant, committed people working together that evolves us?
“Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it is the only thing that ever has.”
The thoughtful, committed, and selfless citizens at Vertex Pharmaceuticals definitely changed the world for Rachel and Rebecca.
“(Now) neither one of us have to complete the treatments (daily morning routine) unless we get sick. I say it was like an addiction before Trikafta. If I didn’t do the treatment, I couldn’t breathe, and my first instinct would be to go set up for a treatment no matter what I was doing in that moment. But after Trikafta, I don’t feel that need to do it everyday or multiple times a day.”
It’s not all rainbows and butterflies. Trikafta treatment costs over $300,000 a year. Unless you’re super wealthy or (as in Rachel and Rebecca’s case) your health insurance pays for it, it’s not an option. Rachel explained that it’s super expensive because it’s a “specialty medication” made only for people with CF. And since only about 40,000 Americans have it, there’s no money to be made from mass producing it.
Still, there are heroes among us. People content to contribute without applause and adoration. Without trying to be role models, they’re teaching us that shared group success can be a greater and more gratifying success than individual achievement. And that no one, not even Addams, Marshall, Curie, Salk, or Fleming succeeds alone.
“If I have seen further [than others], it is by standing on the shoulders of giants.”
Growing up, I don’t think I got that. Whether it was selfishness, a lack of trust or, (probably) both, I wasn’t much of a team player. It wasn’t until I started teaching and coaching that I began to see the light.
