This is Eli

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

I’ve arrived in Washinton, DC, and it’s permanent.

And now it’s Saturday morning, 20 days after my plane landed.

My family isn’t here yet, technically, physically.

I carry them all around like magic.

lailaeli

Eli is with me right now, sitting on my heart playing choo choos, for instance.

But how did this all happen?

I’ve been thinking a lot about that.

To get here, in a little suburb right outside the nation’s capital, I had to land in Oklahoma first.

That was back in 2012. Shortly thereafter, Eli arrived. He was squishy and pink and perfect, with wise dark eyes. He fussed very little, even for a newborn.

His tummy began to swell. Nurses began to panic. They put him on ze chopper.

Ze chopper?

Was that necessary for a 10-minute drive across town? I still have the bill we got a week later, made out to my one-week old son, for $22,000. And I later found out the hospital where he was born offered to drive him in one of its ambulances across town. But in a decision I was not a part of, he was instead made to wait six hours for a helicopter transport from the hospital where we wanted him to be, the only children’s hospital in the state.

Eli in the beginning

The beginning

When I learned these facts later, about the travesty transport decision that put his life at risk, our finances at risk, and that I was not a part of, despite being a consumer for healthcare, one of the most expensive fucking things you can ever buy, it hit me square on my brain.

Your son has a target on his back. He is sick. And everyone wants a fucking piece of him.

Every entity that will save my son wants to rob him, too.

New hospital, after robbing us, saved my son’s life. His doctors diagnosed him with cystic fibrosis.

Side note: It’s stunning to be told a baby has a fatal illness. There really aren’t adequate words to describe what that felt like. A mack truck? A wildfire? I grieved for the life we wouldn’t get. One that was normal, like everyone else’s, at least from the outside.

But things got better as real Eli replaced fake Eli from my mind. Caring for him has become our honor. Sometimes he breaks our hearts, asking why he has an illness, or thrashing at us and scratching at us when it’s time to do the care that is keeping him alive. Other times he is docile and cozy, laying on our chests during hours of breathing treatments with cartoons or video games. He is frustrated, screaming in anger from a deep, primal place after his stupid shaking vest knocks over the wooden train track bridge he so carefully engineered, yet again. He is funny, playing pranks, like turning the lights off when we are in the room, and keeping running jokes going for days.

Every entity that wants to save him wants to rob him, too. It hit me again at our first drug denial. We couldn’t afford the RSV-preventative drug Synagis. That was a special kind of hell, knowing a drug existed to keep his lungs safe and that he wouldn’t get it.

There was no fucking grant program. There was no fucking charity. He didn’t get the fucking drug, and then he was fucking hospitalized for five days, where there are fucking superbugs fucking roaming the halls waiting for a set of lungs like his to destroy.

Fuck that.

I shall say it again in all caps FUCK THAT.

Luckily I have pleasant distractions in my life that prevent bitterness from settling in.

Since I’ve moved to DC, Eli and Laila have remained in cahoots, attempting to trick me every single phone call, saying it’s night when it’s morning, morning when it’s night, as if they are now half way around the world.

Back to Oklahoma. Right after Eli’s birth.

I met an inspiring group of people with our local Cystic Fibrosis Foundation (Love you, Celia), and they invited me to Washington, DC for a volunteer leadership conference.

The event was incredible, and it left me wanting to do more. Later, I would, locking down about $70k in grants for drug research for the foundation over the next three years.

But at the event,  at this big forum in a conference room, my son having just been denied a drug, I sent a big, obvious question up to the front of the room about drug costs. It was along the lines of – so we’re giving you all this money, where is the guarantee we will be able to afford the drugs?

The CF Foundation leaders totally ignored my question.

It pissed me off.

Back in Oklahoma, I’d made a friend named Brianna. She has two littles. She is really smart. Her ideas are really fucking good. She is also a reporter. She is a boss

She did this smart thing, walking down one of Oklahoma City’s arterial roads. it is really difficult to walk anywhere in Oklahoma City. There are no sidewalks. She walked anyway and talked to people along the way, and then she wrote about it, and then she gave a speech about the walk, which I found inspiring.

Also, there was free wine.

The group putting on the speech was looking for speakers to talk about what inspired them. I had too much free wine and I signed up for the next round.

The speech was to be about something I was passionate about. But anger is passion, and I had lingering anger about the cost of the drug Eli couldn’t get.

Looking around, I didn’t see anyone in the cystic fibrosis commiunity raising the alarm about the cost of our latest drugs, which were a lot more pricey than Synagis.

The most exciting and groundbreaking drug, from the Boston-based company Vertex, Kalydeco, approved in 2012, gave all of us in the CF community hope. It had been announced at 376k per year, which stunned me. I mean – the CF community had paid for this drug. The company had used tax incentives for orphan drugs to create it. Where do they get off putting that kind of price tag on our drug?

The phrase that comes to mind is “Drinking from both sides of the trough.”

Where do they get off threatening my hope?

What’s shitty is – we’re all desperate for our children to stay alive. We would do anything, pay anything. We are busy as hell, too. CF care takes at minimum 2 hours a day for Eli.

We are occupied and desperate, myself included.

We are beinge extorted. And it’s easy to extort us.

On principal, I objected.

I gave the speech. A petition I designed to go along with the speech took off, eventually gaining 130,000 signatures.

What good is a petition on the internet? It’s yelling in an echo chamber. So what?

I wanted to give it to the company. I wanted a sit down.

They oblidged.

Vertex first offered to come to Oklahoma. I told them no. I’ll come to you.

I didn’t want them to spend money on me. I didn’t want a steak. I didn’t want to be pals.

I sold T-shirts instead so I could take Eli and deliver it, without taking their money or gifts.

We put our petition in a yoga mat and got on a plane. I put Eli in a Hamilton costume.

Shameless:

elih

Our visit – futile and frustrating as it was – got a little media coverage.

I got a phone call.

His name was David M. I googled him. He was an ‘M’ in a mysterious DC firm named for first letters of the partners. He divulged he’d be retiring soon. He told me he had  terminal cancer. He told me $450,000 worth of drugs had pumped through him to stay alive.

He told me he knew patients who weren’t so fortunate as he, that were dying because they couldn’t get a hold of the drug Revlimid, or others. They couldn’t afford it. So they died. Quietly and in the shadows.

You hear from the sick in the shadows sometimes. GoFundMe is like their last gasp of fucking air.

He was starting something new and calling it Patients for Affordable Drugs. And he wouldn’t take money from drug companies, or any other industry, in going about this activism, which no one else was doing, because everyone takes pharma money. Everyone is, therefore, muzzled.

No one is truly speaking for patients in the ongoing drug cost tragedy.

We were same page, David and I.

I helped them launch and gave them advice for eight months on a volunteer basis.

I was really down after that first stupid, futile meeting with Vertex. My smart friend Brianna with all the ideas told me to buy stock in the company and become a shareholder activist.

So I did.

My new friends at the patient group even flew me back to Vertex so I could finally get facetime with the CEO, in the boardroom.

He gave me more runaround.

A job opened up at P4AD and David hired me.

I put some stuff in some suitcases and got on a plane. I’m in DC now.

My family is still in Oklahoma, but they are here, traveling with me by way of my heart.

I’m glad to be here, because greed keeps trying to kill my son. Not just along the lines of drug costs.

The GOP tax plan is a greedy hot mess that will hurt the sick. If it were a plan from the Dems that hurt the sick, I’d say the same thing. It happens to be from the right. And I’m opposed to it because it’s wrong to do things like take away deductions for medical equipment from families whose children have incredibly complex medical needs.

littlelobbyists

I’m connecting with other activists now who are independent and who want to work with both sidea of the aisle on drug costs.

My group may be small, but we are good at making connections with others who refuse to be owned and muzzled. We are good at telling stories.

And little people have big stories to tell. They maybe just need someone to listen. Someone to deliver the messages to the right places and to the right people.

That’s what I’m trying to do now.

I’m here trying to occupy the space between yelling on the internet and getting something done.

And what I’ve found in a few short weeks is that getting something done is going to be infinitely harder than yelling on the internet. My brain needs to catch up to my loud mouth. I’m humbled by how little I actually know. I’m humbled by the people I meet who know so much more.

I only know now that compassion is going to win. Greed is threatening the livelihoods, lives and liberty of the sick.

Here is a good place to be. Here is a good place to fight.

Eli is sitting on my heart and his little fists are up. He’s ready. Me too.

 

 

 

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One thought on “Eli goes to Washington

  1. Thanks, Juliana! Carry on!

    Like

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