This is Eli

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

Panic strikes as I remember my make-up is in my gym bag at work.

There is knock on the door.

It is a TV reporter and cameraman.

My son is eating cereal in his diaper.

The TV reporter and cameraman enter.

Eli sees them, throws himself on ground and refuses to wear pants.

So began our little dispatch on the petition I made to stoke public discussion on the high price of charity-funded drugs made to help my pants-less fellow with cystic fibrosis.

My lady reporter friend Rachel Calderon reads my blog (Hi Raaach!)

She’s always up on social media looking for interesting stuff. Last year, due to my blathering on about trying to figure out personal finance in the face of chronic disease, I served as her every-mom in a different report. Still trying to figure that one out, personal finance plus chronic disease.

Turns out it’s hard for people to go on camera and admit life’s a struggle, man, because Rachel had a real hard time finding a subject.

But, life’s a struggle, man.

That struggle is why I started my petition. That’s why Rachel came to my door again.

I found make-up in a corner somewhere. Eli put on overalls-with great difficulty. 

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

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?

No.

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?

No.

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

No.

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?

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. 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.

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 from early childhood to 42 in the U.S.

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.

I can say I find that deplorable.

I can say that I hope the last words of the now dead schoolgirl ring in his 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 have 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?

No.

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

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.

Thank you for your support. My petition has almost 9,000 signatures, and I’m blown away.

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