This is Eli

A blog about Eli. A blog about survival – and by that, I mean life!

I walked under the understated purple Vertex sign and into the airy, modern corporation in Boston’s posh Seaport district with two goals:

  1. Attend a shareholders meeting.
  2. Ask a question to the CEO, Jeff Leiden.
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Vertex visit! Take 2!

First, I had to get past a company attorney, who asked me for the paperwork that proved I owned shares.

Then he asked if he could keep it.

This all felt familiar.A year ago, I sold a bunch of T-shirts to get to Boston, in the same airy lobby, with my little boy, then 3, and my best friend. We arrived at that lobby on Oct. I’d put Eli in a Hamilton costume for emphasis. He carried a 20-foot long petition we planned to unfurl in a dramatic flourish in front of Vertex executives. It had 125,000 John Hancocks, all asking the CEO, Jeff Leiden, to stop gouging our charity-funded cystic fibrosis medicines.


Security, back then, also asked my best friend and me for our personal property –  drivers licenses.

“No,” we’d said.

Back then, in light of my petition, the company gave us a meeting with executives, but one person was missing. Jeff Leiden, the chairman and CEO of Vertex.

That bugged me, and I knew I’d be back.

My only goal with this latest trip was to look the man in the eyes and ask an earnest question, human to human, on behalf of humans.

I bought 28 shares in 2016, after my petition and first meeting got me nowhere. That’s peanuts to a $20 billion corporation like Vertex, but it’s plenty to get me into a shareholders meeting and hear from the man himself.

I’m grateful for this company. Its motto is “All in for CF.” It could legitimately cure my son’s illness. But ever since it announced the price of its first major discovery, Kalydeco, in 2012, at $376,000 per year, I’ve had grave concerns about how much it would cost for me for me to keep my little boy alive.

I donate to the charity that has given Vertex millions to incentivize its cystic fibrosis work, locking down $70,000 in grants an another handful of thousands from family, friends and supporters in Eli’s first few short years here. To say I support the cause is an understatement.

And yet, despite handing over a pile of cash for research, I don’t recall having any say in the final prices. I’m not sure the charity did either. I’m not sure any of us do.

It feels fundamentally wrong, not having any say. Not having any say has inspired generation after generation of American protesters, all the way back to colonial times.

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Sure, our lawmakers are, in theory, supposed to have some kind of regulatory authority over big corporations like this. But while it’s illegal to gouge a gallon of gas during a weather event in states like Oklahoma, where we’re from, you can gouge a drug made for a dying person without any hassle whatsoever from the government — local, state or federal.

It’s the kind of thing that makes you go hmmm.

It made a new advocacy group called Patients for Affordable Drugs go hmmm. The group is one of very few patient advocacy groups that takes no money from drug or insurance companies.

So, as a volunteer patient advisor for this group, which liked my style, I traveled to Boston again for the June 8, 2017 shareholders meeting. They paid my way. I didn’t have to sell T-shirts this time.

Now I’m selling them for a podcast. Ha!

Besides looking after my 28 shares and a major asset named Eli, I was also there to listen to what that a group called the Interfaith Center on Corporate Responsibility would have to say. One of their reps would be at the meeting too, trying to push Vertex to disclose what it pays lobbyists.

I liked their style.

First, I had to get in.

Standing there in the lobby, at a desk topped with a few neat rows of plastic shareholder name tags, I produced from a manilla folder a legal proxy, a document I’d secured from my broker. It stated the shares were in my name. I’m not sure the lawyer expected me to have that, but I did.

I told the big bad tough guy lawyer he couldn’t have it.

Up the elevator I went.

I walked into another modern room awash in window light.

It was smaller than a classroom and full of well-heeled employees.

A number of them had a staring problem.

Nothing menacing. I sensed curiosity.

I mean, last time, I had a kid in a costume. Maybe they thought I’d show up as Abigail Adams or something, I don’t know.

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What’s this poor kid’s mother going to think of next?

I’m telling you — more people attend my daughter’s PTA events than this!

Did anyone in this teensy room even have cystic fibrosis?

I wasn’t sure, but somehow, I doubted it.

As I took my seat, the man who said he’d been appointed chairman of the meeting handed me a sheet of rules.

I tried to remember what I wanted to say. At 9:30 a.m., the meeting began. I think there was a brief intro from the emcee.

Quickly, the agenda moved along to the shareholder presentation from the ICCR rep. She walked to the mic to make her case.

She had just two or three minutes to do that, per the rules.

Her group had submitted a proposal for shareholders to vote on that asked Vertex to disclose what it pays lobbyists. The proposal has been  part of a wider 2017 effort; ICCR members challenged 11 U.S. pharmaceutical companies and six foreign ones with resolutions like this one. The hope was that Vertex, as a major force in pharma, would take a leadership role in expanding disclosure around its drug pricing strategies.

“In our view, corporate boards of directors have an obligation to oversee strategic decisions regarding pricing to ensure they do not present undue risks for shareholders, patients and providers alike,” the group wrote in a letter to 17 companies, including Vertex. “Without adequate transparency around these strategies, investors cannot hold directors accountable for decisions that may have sweeping and long-term implications for the business and its many stakeholders.”

I liked the idea. Transparency is like bleach to big, opaque entities, whether you are talking about the federal government or big pharma.

Big transparency fan over here. Shine a light. Lift a rock. Show us your documents, sexy.

The board, chaired by Leiden, who is also the CEO, recommended shareholders vote “against” disclosing what it pays lobbyists to shareholders.

(I used my big 28 shares to vote “for!”)

I knew the conclusion of the ICCR’s presentation would mark my first chance to ask a question as a shareholder, and hopefully not my only one.

I hopped up and got in a real obvious one.

I walked to the mic and said:

“Why don’t you disclose what you pay lobbyists to shareholders?”

I remember a vague line of reasoning from the emcee and the promise that they’d get better at it.

But, he pointed out, shareholders had sided with the board – chaired by Leiden, who is also the CEO. Shareholders voted it down.

I sat down.

In a blink of the eye, it was time for any other audience questions.

Man, this emcee talked fast. This cat talked like that guy from the MicroMachines commercial!

My only other chance to address the board of directors and executives as a shareholder had passed me by in an instant.

I shot up my hand and let out a little cough, lest he overlook me.


I got my chance to speak again.

This time, I asked about a very ill boy who has been waiting for two years for Orkambi, another great discovery that costs the equivelant of an OKC house a year (maybe a Boston parking space), one that Eli isn’t old enough to take yet.

The boy, Lucas, is severely malnourished. His weight makes him vulnerable to lung infections. He is hospitalized all the time. He’d rather be outside, playing with his friends.

He’s from Australia.

Borders don’t matter to me. I see the cystic fibrosis community as one big family.

Well or sick, we are all tumbling toward the same fate  – death! The end! Buh-bye!  People with cystic fibrosis are heading there much faster than most of us.

I’d read in my shareholder materials that the company had reported a billion and a half cash on hand.

It could improve Lucas’ fate. Maybe it could save his life.

Surely, they could do something for a kid like him.

That brought me to the one question I had come to ask.

Here it is:

“How do you justify the  neglect of this child?” I asked Mr. Leiden, the chairman and the CEO.

To my surprise, he walked to the mic. Unlike some of his employees, he hadn’t turned around and looked at me before then, but he was looking at me now.

I listened as he said my son’s name.


Vertex wants to cure the disease, for Eli.

The company is working extremely hard.

I appreciated his words.

In the fog of polite confrontation, I hope I remembered to say so.

He hadn’t answered my question.

And so I told him, he hadn’t answered my question.

I repeated it.

“How do you justify the neglect of this child?”

Lucas could be Eli. Eli could be Lucas.

Lucas may be far away, on another continent, suffering in the shadows, but to hold out on him for two years means the company would have no qualms holding out on my kid, either.

Each little life is precious. Each little kiddo deserves a chance to give these wonderful, charity-funded drugs a go.

“Thousands of children like Lucas will never see these drugs,” I said.

Leiden had taken a seat. I still stood at the mic.

The meeting emcee told me if I kept pushing, I’d be removed.

My only regret is that I said “Thank you” and sat down.

I glanced at my phone on the way out. 10:05 a.m. The meeting was over in 35 minutes.

I should have kept pushing.

I will never stop pushing.



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4 thoughts on “One giant pharmaceutical company. A simple question. And me.

  1. Simon Weiner says:

    Keep up the fight. Don’t give up


    1. j&m says:

      Thank you! It all feels so futile! Bit no one is going to do us for bit us!


  2. Jenifer Webb says:

    The world needs caring mavericks like you to stand up for what you believe is decent, compassionate, and right,
    and to speak for those who cannot..Thank you for being proactive. I sign a lot of petitions and you are inspirational! Bless your son. I hope he and all kids with CF get affordable access to life-saving medicines in time. Keep sharing your story and in time you will gain a loving army.


  3. Chris says:

    You inspire me. Bigger revolutions have been started by single spark. Who knows . . .


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