How to investigate a drug company 

Yes, as through this world I’ve wandered

I’ve seen lots of funny men;

Some will rob you with a six-gun,

And some with a fountain pen.

-Woody Guthrie

If you, like me, are interested in getting a handle on the inner-workings of pharma, – the good and the bad – you’re going to want to take heed and say hi to Edgar.

IMG_2743

Eh?

Yeah, EDGAR, see? He’s got the inside knowledge. The scoop.

EDGAR stands for Electronic Data Gathering, Analysis and Retrieval. Can we call him Ed?

The database is an arm of the U.S. Securities and Exchange Commission, the Big Brother outfit that seeks to protect investors and promote transparency to win the public’s trust.

What that means is an s-ton of info is available to the public online about publicly-held companies, like Vertex, the target of my anti-gouging petition.

(Gouging  the hell out of a drug, BTW, is not illegal at all. Gouging a gallon of gas after a tornado? Why, that low-down dirty Tom fuckery’ll land ya in jail!)

Whether your are a disgruntled prescription drug consumer, an investor or a person who like me has a passion for original source material, you can follow these steps and start digging like a reporter-mom.

This is what you need to look for to get started:

  1. Visit this link to EDGAR
  2. On the sidebar along the left side of the page, click “Company filings.”
  3. Now what? To get started, here are a few things to know and do:

Know: EDGAR is unforgiving.

To pull up Vertex, I had to type “Vertex Pharmaceuticals” to find the correct company, quotes and all.

On the top left, I can filter the results by the type of document filed. Those document names, tho. Steel self for the opaque, acronym-plagued bureaucratic parlance that’s characteristic of Uncle Sam.

First, it’s helpful to understand a few basics about what you are looking at.

  • The 10K

    This important filing is an annual report. These are superlong and contain oodles of juicy info. The company needs to detail its business, like risks and potential conflicts of interest, with its named executive officers and directors.

  • The 10Q

These quarterly reports contain mostly financial info as well as updates on lawsuits and other goings-on that have changed through the quarter. Most of what is in a quarterly report is compiled in the annual report, so you might want to read the bigger summaries first and then follow interesting issues throughout the year or as long as you are interested.

 

  • The DEF 14A

I’m sorry, what? These terms are the worst type of jargon. DEF 14A is code for proxy statement, which is not self-explanatory. So let me explain: Ahead of a shareholder meeting, the SEC requires companies to debrief its shareholders so they can make informed decisions about info that will be aired at an annual or special stockholder meeting. The company must file a DEF 14A ie proxy statement with the SEC. These are public documents.

Back to the unforgiving EDGAR:

To filter your results, you need to type “10-K,”  for annual reports “10-Q”for quarterlies or “DEF 14A” for proxy statements. These search terms must be typed in exactly, including the dash, or it won’t work.

The work of combing through EDGAR yields lots of information, like the below chart of Vertex executive salaries. Mark n me combed through five years of reports, gleaned the compensation packages and then tallied it all up in a Google Doc to come up with what you see below.

VERTEXsalaries

Have fun and let me know what you find out about the companies you investigate.

Silly stuff at clinic

“The truth is like poetry.

And people fucking hate poetry.”

-overheard at a D.C. bar and quoted in “The Big Short” (on Netflix now BTW)

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Eli: Like a boss

Eli earned a new nickname this week:

Boss.

He did the best he could to boss everyone in his world, everyone trying to mess with him.

He is 38 pounds of piss and vinegar.

He’s a boss.

Want to take the piss out of him? (Literally)?

Naw, he ain’t havin it.

Need a drop of blood?

Yeah, sure, ya want a knuckle sandwich first?

To alleviate our boredom as a hospital stay stretched on, I blew up hospital gloves and turned them into weird, blue people, like Hand Baby, who became Eli’s hospital Wilson.

Except Eli punched the shit out of hand baby, not to mention hand baby’s ill-fated dad, Dad Hand.

Next, Eli potty trained hand baby, like a boss.

We could all learn a thing or two from Eli. He knows how he feels and he’s not afraid to let you know how he feels.

Of course, at 3, he doesn’t understand people trying to take things from him and hurt him are actually trying to keep him well.

That’s where Mark and me come in. We let those people do the things to him they need to do to keep him well, completely against the wishes of my little big boss.

It’s heartbreaking. I betrayed my son roughly 204 times in our thus far short 5-day battle to get his lungs working right, holding him down procedure after procedure, through his protests of thrashes and screams and “I HATE YOU”s.

His preferred emphasis word is “really,” as in “REALLY,” as in “This REALLY REALLY REALLY hurts,” and “I REALLY REALLY WANT TO GO HOME.”

We know more now about what happened this week to Eli’s body, when he stopped breathing right and his tum and neck sucked in to squeeze more oxygen into his blood and his heartrate spiked. We know thanks to a sputum sample that entailed a team of doctors and nurses and me holding him down while they stuck a tube through his nose and down his throat and scraped out some junk, to tot protests so loud that they were surely heard around the world.

A few days later that junk had a name; the blossoming outbreak of a common cystic fibrosis bacteria currently fucking with my son is Haemophilus influenzae. 

It’s a little more complicated than that, though. He had a trifecta of viruses in him, including RSV, entero and rhino viruses. Those viruses made the Haemohilus influenzae bacteria stuck in his lungs because of the CF jazz on up. He had a “CF exacerbation,” a clinical term that essentially means bad chronic bronchitis.

That much we know and today, after five days of pumping oxygen and antibiotics, Eli was well enough to go home.

He had a PICC line placed and needs antibiotics for roughly 10 more days at home.

It doesn’t mean he’s over it, all of this, all of these people messing with him.

After ignoring his demands all week for the sake of his health, he made a final plea as we left the hospital and drove by a fire truck.

“STOP!” he commanded.

“I WANNA SEE THE FIRE TRUCK.”

He went on and on.

‘I WANNA SEE THE FIRE TRUCK. THE FIRE TRUCK. TURN AROUND!!!!!!!!!!!!!!”

And for the fir st time all week, I did what he said. I did him one better.

I went to the goddamn fire station 1 downtown with Eli still in his tiger-emblazoned hospital scrubs.

I had to do what the boss said, didn’t I?

Yeah – I DID.

Ok, buddy, here we are. Wanna get out of the car?

He went shy on me.

Come on, sweetie, let’s go look at the ladder truck.

Me with my no-makeup/hair askew/inexplicable active wear (had I not just had like three scones in 12 hours while sitting on my ass?) got Eli out of the car and we walked over to Fire Station 1 in downtown OKC.

The fireman tried to coax Eli into sitting inside the truck, but my son was so shocked that we were at the actual firestation he had  practically gone catatonic. We checked things out for about five minutes and the nice firefighter brought over two sticker badges, one for him, one for sister.

I put Eli back in the car.

He noticed a glass factory across the street.

He wanted to go there now.

“NOW.”

No, sweetie, we have to go home now.

Eli next screamed “NO” for 20 straight minutes, along with “TURN AROUND” and “I HATE YOU.”

He had some residual rage from his hospital stay, from his frustration with people messing with him, doing everything he told them not to. That’s my theory, any way.

I let him scream. I took him home and let him hit me, roll on the floor and hollar to his heart’s content.

“Inconsolable” is the word that comes to mind.

He ran to the door and messed with the locks, so determined was he to get back to the goddamned glass factory.

We distracted him with the prospect of opening a gift that had come in the mail.

Things were better until the home health nurse arrive and we gave him his next dose of antibiotics.

Again, I had to restrain him completely as he screamed and Mark worked the IV flushes and drugs under the supervision of a nurse.

“It won’t hurt, buddy. It’s going to be over soon,” I cooed. “Shhhhh. It’s OK. Shhhh.”

He forgave me, cuddling up afterward.

Since then his smile has returned. We threw him a party with pizza and cake.

He’s smiling again.

Like a boss.

A cystic fibrosis drug price spiked 9000 percent one year to the next. These pulmonary doctors are raising hell, but will anybody listen?

Did you hear about that cystic fibrosis drug that spiked in price 9000 percent from one year to the next? Neither did I.

We need to wake up. This is happening. It’s going to happen until it’s curtailed by humanity and common sense and better laws. It’s going to kill, real quiet like, while no one is paying attention and executives line their pockets.

An editorial that ran Sunday in The Pittsburgh Post-Gazette talks about the insane 9000 percent price hike, and other suspect shenanigans.

“The problem of runaway drug prices has not been limited to new scientific breakthroughs like Kalydeco and (perhaps) Orkambi — even previously inexpensive drugs are now being priced out of range for some: Doxycycline, an antibiotic used for decades for CF (and other conditions), went from $20 a bottle in October 2013 to $1,849 by April 2014, a 9,000 percent increase.”-Drs. David Orenstein and Brian O’Sulliavan.

Right on.

The docs who wrote this have become my e-pen pals

Like me, the docs see drug prices – in particular our rare disease drug prices – ballooning out of control.

I tracked them down because they were among five lung docs who in 2012 signed a protest letter that made it into the hands of a Milwaukee Journal Sentinel reporter covering the Cystic Fibrosis Foundation’s venture philanthropy model. While Eli was just a wee guy recovering from a gut surgery in the hospital in late 2012, the FDA approved a cystic fibrosis drug called Kalydeco. It helps a different genetic version of his disease and targets the way the cells operate, unlike all other CF discoveries, which address symptoms. It costs upwards of $300K/ year – that is $900/day- Next up came Orkambi, which bumps lung function a small percent for Eli’s diseaseand costs $259,000 per year.

Armed with frontline details from the docs, I gave a speech in protest of CF drug prices and launched a Change.org petition a few weeks back. It now has more than 93,000 signatures.

I also bugged my new doctor friends to take their solid points out of medical journals and push them into the mainstream.

Cuz I’m pushy.

My hope is these parallel efforts will bump my petition up to 100K signatures, one for every person in the world with Eli’s the disease.

Eli turned 3 over the weekend.

The next day, The docs published a smart editorial.

I’m over here like: Eli this editorial is the best present ever. Long live freedom of speech
Eli: Gimme my Tonka chopper mommy.

Give it a read.

Sign my petition if you haven’t already!

Right on.

 

Problems, problems, how you gonna solve ’em?

Sometimes you just gotta write through the fog of despair to find clarity.

That’s what I did Saturday, starting at 5:30 a.m., before my kids were up, so I could let go of a crummy week and have a fun Halloween with the family.

I discovered that when you put it out there, solutions float your way. Some come in the form of an epiphany. Some come from the wisdom of pals who know what’s what.

Problem 1: My son decided he doesn’t want to do any physio for cystic fibrosis, and instead prefers flipping chairs, thrashin’ sis and popping mom in the nose in protest

Solution: Epiphany= visit Amazon.com and order youth punching bag w/ 2-day shipping (we can’t take it any more)

This punching bag as as substitute for the rest of us.
This punching bag as as substitute for the rest of us.

Problem 2: Getting Eli’s treatments in before and after work and an extra session for crud cough battle

Solution 2: Friend idea=Let someone else do it!

After I lamented all my woeful woes, a CF mom (Hi, Becky!) texted me. Our kids go to the same day care, which caters to children with special needs. Crazy thing about CF – our children can’t get within six feet of each other due to infection concerns. They aren’t in the same class and don’t threaten to infect others – but CFers lungs like certain types of bacteria and can spread that bacteria to each other. This day care is so on it they basically follow our children around with Lysol any time the other is in a common space. Anyhow, other CF mom e-mailed me to remind me that our day care handles this type of special need – like vest sessions and breathing treatments.

This solution was so right there and so right on and we’d tried it once before, then gave up. Why? Mark brought Eli’s vest to school once and Eli stared at it in silence as tears streamed down his face. Pops never had the heart to haul the equipment to school after that. I guess we were both resigned to being the party responsible for pissing off our toddler with his treatments.

Becky reminded me that the school is there to help, as a partner for parents who need partners in care. YES.

Eli needs three sessions on a shaking vest a day to shake up his lungs so he can circulate and/ or cough out the thick sticky mucus his body makes. He needs good sleep because he’s a growing boy whose body is always fighting invisible battles. And we need to get out the door on time and sans exploding heads.

So off to daycare pops and the vest go again! It packs up in a bag the size of an XL carry-on, but it has rollers.

This was all a good reminder: We can’t get through this crazy game called life alone.

We need punching bags, friends and a helping hand!

xo

And the alarmingly-named bacteria growing in my son’s lungs is…

Streeeeeep aureussss!

I’d like to thank my gene pool, Mark’s gene pool and modern medicine, without which, I would never know what was growing in Eli’s lungs.

Continue reading And the alarmingly-named bacteria growing in my son’s lungs is…

0 to crud in 60 seconds

I put a note on my Facebook page for Eli that buddy improved and was no longer coughing.

Shouldn’t have done that.

Continue reading 0 to crud in 60 seconds

For a few tense moments, Eli couldn’t breathe: here’s why

Our world went topsy turvy yesterday when my nanny walked into my son’s room to find him on his belly, neck flexed and thick and craned toward the ceiling, face beet red.

He wasn’t breathing. She performed CPR. When that didn’t seem to do much, she held him upright and gave him big pats on the back.

Eli seemed to be choking on something, she said. Once she got him upright, he stopped choking and started sucking in labored, wheezy, shallow breaths.

Continue reading For a few tense moments, Eli couldn’t breathe: here’s why

Eli breaks the scale

Yesterday I found out that my little buddy is actually more like a big buddy.

big buddy in the elevator
big buddy in the elevator

Continue reading Eli breaks the scale

Day 1: Healthy 65 Holiday Challenge! #healthy65

Today is the first day of the #healthy65 holiday challenge! Nov. 10- Jan. 13, do one healthy thing per day of your choosing to participate. It only needs to be related to wellness – the mental or physical. You can join at any time! Here I am drinking my fruits & veggies this morning via a green smoothie.

Healthy65-Day1

Sixty five has a tie to the cystic fibrosis community (kids sometimes call it 65 roses)- also, 65 days will get us through the holidays and give us power in the face of sweets and holiday parties and various obligations and stressors. This is not a weight loss challenge (though you are free to use it as such — and dropping some poundage is one of my goals). It’s all about creating healthy habits and breaking the bad ones. It is def open to the inspiring cystic fibrosis community, too! Sticking to treatments is a great goal! Coffee with a pal, a brisk walk – anything wellness- oriented goes. Thx for following along. Feel free to make posts on Twitter, Facebook & Instagram about what you are up to! Use hash tag #healthy65 to share.

For those new to hash tags, by typing pound and then a word ie #healthy65, your thoughts are grouped on Twitter or Instagram with everyone else doing the same thing. So in those social communities, searching #healthy65 will turn up everyone posting about the #healthy65. It’s a way to create an online wellness tribe and get inspired by the ideas swirling around us in cyberspace.

You can post about your effort where you like — your own blog, Facebook, Twitter, Instagram etc. You can share every day, every other day, on occasion, whatever you wish. You are free to do the #healthy65 in total secrecy or as noted below “semi-secrecy,” if that’s how you roll. The purpose of it all is to get a wellness movement going. Let’s see how big we can get it.

Get ya background info here.

View my smoothie recipe from today below:

I drank my fruits and veggies first thing this morning. Here’s what I made

Pump it up with Pumpkin Smoothie!

1/2 can pumpkin
2 cups spinach
1 cup frozen fruit blend (mine had peaches, pineapple, grape and strawberries).
2 cups water
Dash of cinnamon
Drop ‘o vanilla

I blended the greens first, with most of the water, until pureed.

I set this aside in a two cups. Next, I blended the pumpkin, fruit, cinnamon and vanilla with the spinach mixture in two batches. I still use our Baby Bullet for blending. One of these days I’ll get a powerful blender. Baby bullet is getting tired and grumpy from all this blending, but she does the trick.

I also added about a cup of 0 percent Vanilla Greek yogurt.

To fatten Eli’s smoothie up, I would add some heavy whipping creek and whole milk Greek yogurt.

Happy Day 1. Do you want to join in? What are your goals?

Eli, the body slam snuggler in duct tape.

During our vest session tonight I made a video to showcase Eli’s body slam and snuggling skill(z).