June 8, 2017

Juliana Keeping, Patient Advisor

I am in Boston today, a new shareholder in Vertex, the drug maker that could cure my son Eli’s deadly illness, cystic fibrosis.

At what cost?

So far, the drugs it has developed cost anywhere from $286,000 to $376,000 per year. The company priced our drugs this way after taking untold millions of dollars from the cystic fibrosis community.

Those prices are a betrayal. Of course, we’d pay whatever it takes to keep Eli alive. The sick make easy extortion victims, and drug companies know it.

I bought stock to have some say in how this company is run.

If you care about how the company is run, you should also buy a few shares of stock.

So far, I voted in favor of a shareholder resolution that would force the company to disclose what it pays lobbyists.

The board wants to keep those numbers secret.

Why? What’s with the secrecy?

Tomorrow, at the annual meeting, I hope to find out more.

With our country’s few real protections for the sick at risk, there’s no guarantee that when Eli needs those expensive drugs a few years from now, he’ll get them. Far less expensive drugs and procedures have wreaked havoc on our lives in his four short years here.

That’s not his fault.

We are all to blame, for allowing the drug price system in place to save him to run all over the sick and their caregivers, financially, just because illness is in the picture.

This latest effort comes on the heels of a semi-failed one. I tried to do something with my opposition to the latest drug costs by giving a speech and launching a petition that asked the leader of Vertex, Jeffrey Leiden, to stop gouging our drugs. It has 130,000 signatures. The company met with me. Since that October meeting, Vertex hasn’t changed a thing.

Yes, more discoveries have come about. More hope.

More terror that the cost of those drugs will be ruinous.

The line that “they have to cost that much” is tossed around a lot. I’ve seen no data to back up those words. In fact, studies have shown clearly there is no correlation between price and innovation and that drug companies spend far more on marketing than research and science.

Here’s a line for you: Vertex is extorting the dying.

You may be thinking: So what? Quit whining.

Would you say the same thing to Lucas’ mom? He’s an Australian boy, severely malnourished, frequently hospitalized, lungs deteriorating more by the day, who has been waiting for Orkambi for two years.

Why should it take so long to get a dying child a drug that would be like a life raft?

Answer: It shouldn’t.

There is no excuse in the world to justify his needless suffering.

Stories that trickle my way also come from the U.S.

Like the mom whose private insurer refused to cover Orkambi because it was so expensive. It had worked so well for her child, but to keep it, they had to switch to a government plan. This family is kind, smart and and extremely hardworking. Almost no one can afford a $200k+ per year drug. So now, fellow taxpayer, the kid’s extreme drug costs are your problem. She’ll need this $200k/year drug for the rest of her life. The programs funding it are now at risk, too.

Other reports entail employers telling employees to get outside insurance in order to keep their jobs. Kalydeco and Orkambi are just too expensive. Businesses and individuals alike are scrambling. The prices set by the drug companies are just too high.

As far as I can tell, most people are too busy, ashamed or too afraid to pipe up about these problems. I can appreciate that, but at the same time, as a storyteller, it frustrates me to no end. Nobody wants to use their name.

Silence is a problem. With silence, problems go unacknowledged. Nothing ever changes.

And – in a lot of cases – I’m too busy playing rapid-fire CF mom catch-up to think to ask.

I’m asking now.

Please share your story. Your voice is powerful.

The group that sent me to Boston, Patients for Affordable Drugs, takes no cash – not a dime – from Vertex or any other drug corporation or insurance company.

They are independent, and they are collecting your stories to bring to policymakers and elected officials.

Please do not be afraid.

Speak. Here is where you can deposit your story.

Remember: Buy a couple shares of Vertex stock so we can all fight back at the shareholder meeting next year. I hope to see you there.