This is Eli

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

Hey, everyone!

I want the quality of my son Eli’s life to remain high, forever, including on the financial end. That’s why I began a Change.org petition to protest the sky high of my son’s charity-funded cystic fibrosis medicines. That petition has nearly 125,000 signatures.

Vertex charges more than $300,000 per year for the drug Kalydeco and a cool quarter million for the Orkambi drug combo. Orkambi stands to help Eli, who has the most common mutation of CF.

To call the prices anything other than greed is a shameless lie.

The time has come to take our protest to the next level. To help, all you have to do is buy a T-shirt in the next 30 days, by July 4, 2016! My goal is to sell 1,000 to 10,000 T-shirts by that date.

I picked July 4  so the sick can declare independence from greed in medicine. Yes, I love history. I do believe in liberty and justice for all! It’s time for an American revolution for the sick.

Enter our T-shirt shop! 

Think of our T-shirt shop  as a sort of ‘Kickstarter’ that will fund a journey of truth and discovery when it comes to the ever-rising cost of our medicines.

This is Eli, btw:

 

Vertex, in defending the high cost of its latest medicines, points out it never turned a profit until recently. The company has repeatedly refused to explain itself outside of vague platitudes like that one.

Hmmm.

The CEO of Vertex, Jeff Leiden, made $94.2 million between 2010 and 2015 after the company accepted charity dollars to develop our rare-disease drugs.

Hardly ever turned a profit while taking millions in charity dollars? Why would you pay a leader so highly for such results? What is the board of this company thinking?

In total, nine executives brought in $252.6 million between 2010 and 2015, according to our analysis of the company’s filings with the Securities and Exchange Commission.

Here’s that analysis! Yay public data. There’s quite a lot out there, if you know where to look. I’ve hardly just begun.

My Excel-wiz husband, guided by my mad public document skillz, created the following table while Eli smeared Play-Doh all over his train set today:

VERTEXsalaries

 

The type of pricing for medicines that could help my son has risen from a miasma of greed that’s invaded many aspects of healthcare, including the cost of medicine.

High prices for cystic fibrosis drugs have far-reaching consequences. The prices keep the medicines out of the hands of children like Eli in countries all over the world.

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Ireland, Scotland and England are the latest to reject a so-called “game-changing” Orkambi based on  its high cost, according to news reports.

I wrote about a 14-year-old girl from Chile with cystic fibrosis who begged to die after painfully wasting away in a hospital for nine months. 

Her last words?

“Help,” she begged through shallow pants. “Help. Help.”

She wanted to die. But she was afraid and in pain.

Here’s Valentina.

valentina

There are Valentinas dying all the time, all over the world, from cystic fibrosis.

Our disease is rare and such suffering remains in the shadows.

I promised her dad I’d try to make things better for kids like her.

This petition, this campaign – it’s part of that promise.

Here at home, $10,000-per-month cancer medicines have become the norm. People are going bankrupt paying for co-pays on Hepatitis C medicines. Even the well feel those prices, in our tax bills and on healthcare premiums, deductibles and out-of-pocket caps that head ever northward. Cash-strapped states are slashing basic services to keep up with this insanity. That’s not a “normal” I can live with.

I’m a reporter and would like to use my skills to bring to light the far-reaching human impact of U.S. drug price insanity.

It’s the story that’s rarely told, and it is a powerful one.

We are not weak and voiceless just because illness is in the picture.

As a community, we can stand up and put an end to a brand of greed that is chipping away at the American dream.

If you have questions for me, e-mail hithisiseli [at] gmail dot com.

Read and sign my petition here. 

Sign up for a newsletter related to this campaign.

And, of course, purchase a T-shirt!

We are ordering them after the 30-day campaign is over from a local printer in Oklahoma City, then shipping them out ourselves, mom-n-pops grassroots-style and with love, so allow at least eight weeks for delivery.

Thank you!

Fight the good fight! Love, Eli & fam

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