This is Eli

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

My son’s body is already under attack by his disease, cystic fibrosis. But that’s not the only predator closing in on him. There is something else eyeing him from the shadows. A tiger is stalking him. That tiger is greed, and if we don’t do something now, it’s going to eat my son alive.

Processed with VSCOcam with c1 preset

Our system is ill and it kills children.

Let me tell you what I mean by that.

Let me tell you the things I can say and the things I can’t.

There is an arrangement between a charity foundation and the drug company Vertex. Charity dollars stream in to fund the research and development of drugs to cure this horrible illness my son has, cystic fibrosis.

The last two Vertex drugs the FDA has approved – Kalydeco in 2012 and Orkambi in 2015 – have a prices that range from $259,000 to $376,000 for a year of pills.

Parents organized in 1955 to form the Cystic Fibrosis Foundation because they were sick of their children living short, painful, tragic lives. In 1938, when cystic fibrosis was first identified, a child with it would be dead by 2.  Today, due to grass roots efforts of CFF supporters spanning decades, in the U.S., the median age of survival is now 42.

It’s brilliant. It’s disruptive. It’s game-changing.

Why, then, have I kicked up dust with my cowgirl boots?

Please let me be clear: I love the biotech company called Vertex. Vertex could save Eli’s life.

Please let me clear: I am not anti-profit. Competition is healthy for innovation.

Please let me be clear: Eli is getting the drugs he needs.

I am pro-reason. Drugs and lives are not Wallstreet play things, which is what they’ve become.

My protest is a pre-emptive strike on the struggles of future Eli.

Here is my petition, which is nearing 20,000  65,000 95,000 125,000 signatures. 

After doing so much good work over many decades, it’s time for the cystic fibrosis community to hold Vertex to account.

This is not an act of war; it’s a controlled burn, the type that is necessary to keep systems healthy and pure.

Pricing a year’s worth of pills the same as a nice upper-middle class home in many markets sets a dangerous precedent. Insurers pay. Governments pay. Ultimately, we all pay, because that’s how it works. The common gal foots the bill. Small and developing nations also have children born with cystic fibrosis. Those nations won’t get these drugs, or future discoveries, at these prices.

Do I know that my insurance company will approve of future lifesaving drugs when current medications are being priced in the hundreds of thousands per year?


Do I know if my son will be subjected to co-pays in the hundreds or even thousands of dollars and need multiple medications priced as such to stay alive?


Do I know if he will have to choose between food and drugs, as the chronically ill do, or between bankruptcy or death?


Those are the stories I’m hearing as thousands and thousands of people sign my petition and leave messages of support.

Stories like that. Bankruptcy or death.

It’s like the game we used to play when we were children:

“Would you rather – be eaten alive by a bear or drown in a sea of tapioca pudding?”

WTF? I was an odd child.

The stories – bankruptcy or death?- are the stuff of my nightmares for little Eli.

No, I can’t say how it’ll go for future Eli. But I can say that I don’t like the way things are going, with new drug combos from Vertex priced in the hundreds of thousands of dollars for one year’s worth of pills, those very drugs funded by millions in charity dollars funneled into science from CF patients, their friends and families.

Then there’s this story: A CF doc named Brian P. O’Sullivan with The Children’s Hospital at Dartmouth-Hitchcock in New Hampshire told me Orkambi – a drug priced at more that $200K/ year – is packaged in 28-pill packs, meaning patients have to buy 13, not 12, times per year.

There aren’t 13 months in the year.

So, what, are drug companies creating ghost months now?

Banalities like these tell us a lot. Forcing a sick consumer to purchase drugs 13, rather than 12 months a months a year is move made to glean yet more profits from sick consumers. It’s greed; it’s another symptom that humanity is ill.

An extra payment is a pretty big deal if you are an adult patient who pays a $500/month co-pay on a month’s supply of Orkambi, like one of Dr. O’Sullivan’s patients. BTW, that adult CF patient paying the $500 is one of a set of twins with the disease. The other twin Dr. O’Sullivan sees pays a reasonable $30/month!

I can say that I found out dying kids in poor and/or small countries aren’t getting cystic fibrosis drugs. In some places kids are still dying by 10 or 15, and I can say that that bothers me.

No one seems to care about dying sick kids from obscure countries we know only as vacation destinations or something we learned about in 7th grade geography.

I wrote a column about a 14-year-old Chilean schoolgirl with cystic fibrosis who begged on YouTube to die by euthanasia in February 2015. Her father, who works in the lab of a chicken farm, relayed to me that he tried to move to the U.S. to help her in the mid-2000s but authorities told him “No.”


By the springtime Valentina Maureira strained to stay alive through quick, shallow pants.

“Help,” she said.“Help. Help.” Those were Valentina’s last words. She died May 14 of the same genetic illness my son carries.

I can say that’s what I mean when I put forth the idea that our system is ill and it kills children.

Vertex began as a small biotech company. The company grew along with amazing discoveries that have helped extend the median age for people with CF by leaps and bounds. In my petition, I highlighted windfall compensation packages Vertex executives have swung for themselves after brilliant minds working under them made a blockbuster drugs funded by patients and their families and friends. Kalydeco was approved in 2012, the same year Eli was born. It thins out the body’s mucus, literally correcting the genetic defect at the cellular level for a small number of patients with CF. Next came just-approved Orkambi, which stands to help those with a more common type of the disease, like my son, by bumping lung function by 3 percent. The price ranges for these charity-funded discoveries are $259,000 to $376,000 for a year of pills.

In 2014, CEO of Vertex Jeff Leiden took home nearly $46 million, according to Bloomberg News.

I can say I find that deplorable.

But it gets worse!

Check out five years of Vertex executive salaries!


(I’ve yet to determine how Bloomberg got its $46 million compared to the $36.6 million figure reported to the U.S. Securities and Exchange Commission, the source of these figures).

I can say that I hope the last words of the now dead schoolgirl ring all of their ears:

“Help. Help. Help.”


I can say that they probably don’t.

Forty six million in a year? How’s about you dice that up and kick it on out to all the CFers for whom the discoveries have come too late, who are desperately campaigning for money for new lungs?

That’s another reason I did this. I’m just sick of it all.

I’m sick of the desperate pleas for help paying for overpriced medical treatments and procedures and drugs. To be clear, I’m not sick of the people making them, I’m sick to my that they <em>have</em> to campaign for cash to pay for what they deserve-life.

It boils down to greed on the backs of the sick and dying.

I know research and development is expensive. But show me the numbers that justify these prices. Show me the profit margin on a $900/day medication like Kalydeco.

Yeah, you can say “but kids in U.S. get the drugs!” via insurance companies, state aid or grants, or some combination – but do we know that this arrangement will last?


Governments are strapped for cash. Tax payers are strapped for cash. The middle class is strapped for cash.

NICU nest flashback.

NICU nest flashback.

Our wages are stagnant and in cases like mine even going down as health premiums rise.

Why are premiums going up? Why are deductibles going up?

Maybe it’s because drug companies create drug prices that are works of fiction and nobody ever does anything about it.

It’s getting out of hand.

Why is the ratcheting up of drug prices boundless and ever-expanding like some dark, evil universe?

Why are we so willing to sit here and take it?

I’d love to be able to shut up and be all doe-eyed and agreeable, maybe pick up a pyramid scheme and make adorable cupcakes and pretend I’m all joyous and shit, like a regular “mom blogger.”

But I can’t. Just can’t.

My son’s body is already under attack by his disease, cystic fibrosis. But that’s not the only predator closing in on him. There is something else eyeing him from the shadows. A tiger is stalking him. That tiger is greed, and if we don’t do something now, it’s going to eat my son alive.

Eli, cowboy

Eli, cowboy


7 thoughts on “Why I picked a fight with the drug company that could save Eli’s life

  1. Kathe Ana says:

    We have a 6 yo CFer in our family and though we might like to think a new drug, this new drug combo from Vertex for instance, would be his savior, I doubt that life and pharmaceuticals-in-our-lives, work that way. In this study there is an improvement (in some of the 12 yo and older) of 61% to 64% lung function. The side effects (in some) are liver damage and shortness of breath. When you look at that risk/benefit relationship, one would have to seriously think twice about bringing these drugs home to your child.

    I signed your petition because I think the dollars being thrown around are unconscionable…compare the CEO salary to the one-year cost of the drug. But, The Cystic Fibrosis Foundation did partner and will receive financial benefits from every child who goes on this regimen. Because the CFF financially supported the development of both Kalydeco and lumacaftor they are entitled to royalties on their sales.

    Liked by 1 person

  2. Jack Butrum says:

    Having done work on a contract basis at a pharma company, I learned what happens in that type of business. The astronomical costs associated with all of the FDA required testing blew me away. When I discovered the long list of unnecessary protocols, I understood what these companies go through in order to attempt to test and bring a new drug to market. The real culprits are the FDA. Did you know that this company was required to test these drugs an so many different population groups (Chronic Heart failure, age lower than 8, age older than 18, Reyes Syndrome, etc.) with each study costing in excess of 4 million dollars apiece.Every single drug! Even if they were targeted to a specific group! The FDA’s unnecessary requirements account for at least 75% of the development cost of every investigation. And mind you that the company eats all of those costs if it fails during research or is rejected in the end by the FDA.

    As far as the compensation of the CEO, he doesn’t write his own paycheck. Protest to the company board. Good luck on that because they are only beholden to their stockholders.

    BTW, I am sympathetic to your plight. I, also, am terminally ill with high treatment costs. I just understand where they come from.

    Best of luck,

    Liked by 1 person

    1. j&m says:

      Thank you for responding. Nothing is as simple as it looks. I’ll continue to investigate all angles!


    2. Jackie Schulkin says:

      I agree, the FDA needs a major overhaul. It takes too long and too much money to get new technologies and drugs through the FDA. Also, they are very incompetent at regulating the food industry. The FDA is in large part accountable for the price gouging. And then there’re unscrupulous, immoral “investors” like Martin Shkreli. That stuff is just wrong and it should be illegal.
      Death or bankruptcy– shouldn’t be a choice. I support this petition.

      Liked by 1 person

  3. Maria Palmer says:

    I am so sorry you and others are having to deal with this in the ‘land of opportunity ‘. This article opened my eyes with tears of sadness, anger and disgust. I don’t personally know anyone with CF but as a mom and as an American, I can say I’m even more disgusting with this government and the way we do and DONT do things for humankind. Praying for this cause and the many children and families worldwide fighting for their loved ones to live. God bless you.

    Liked by 1 person

    1. j&m says:

      Thank you for having a heart! Love, Juliana, Eli and crew!


  4. Dick Holden says:

    But I can say that I don’t like the way things are going, with new drug combos from Vertex priced in the hundreds of thousands of dollars for one year’s worth of pills, those very drugs funded by millions in charity dollars funneled into science from CF patients, their friends and families.

    –are you asked to give the proceeds of charity walks,etc to the company?are they restricted in any way from going to company salaries?


Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

%d bloggers like this: