Here’s the short version of this story:
We went to Boston and received from Vertex the equivalent of a corporate pat on the head.
If you choose to read on, I’ll provide some details.
Eli and mom traveled to Boston, lugging an over-sized carry-on that contained a machine called ‘The Vest,’ a backpack full of medicines and a miniature Hamilton costume for Eli, all the rest of our clothes for four days in one small carry-on, and a 20-foot long scroll in a yoga mat bag. (Yoga mat bags: perfect for those occasions where you need to unfurl a 20-foot-long 1700s-style petition on the go).
— thisiseli (@hithisiseli) October 10, 2016
Vertex, a major Boston-based pharmaceutical company that has come out with two inspiring cystic fibrosis drugs that cost hundreds of thousands of dollars a year, contacted us for a meeting after my change.org petition questioning those prices garnered nearly 125,000 signatures.
The petition is pretty self-explanatory:
I checked with
a constitutional lawyer three constitutional lawyers; my petition is protected political speech.
— thisiseli (@hithisiseli) October 10, 2016
Confession: I had publicity photos taken of Eli. I couldn’t help myself. Look at this kid!
Here’s the least “angry-you-put-me-in-a-costume-mommy” photo I got:
We arrive at Vertex in Boston
We arrived in beautiful downtown Boston, where Eli went mad for all of the construction trucks and fire engines all over the streets.
Really, he was only there for the excavators. We rolled up to Vertex, our meeting housed in a towering and tasteful glass-paned building with an understated purple sign. In the lobby stood a sign emblazoned with the words “All in for CF.”
A reporter and camera-man stood there in the lobby, too. Wasn’t expecting that, but I had e-mailed The Boston Globe’s STAT team ahead of our visit, just in case someone might care that we were there to mount a protest, mom and mini-Hamilton and my side-kick Amy, my best friend, who lives in Texas and who I hardly ever get to see anymore. Eli had taken to Amy, quickly developing separation anxiety every time she left the hotel room or otherwise got out of sight. “WHERE’S COUSIN AMY?” he’d cry out. Little Eli’s voice had one volume setting this trip: Loud.
That’s OK, because we were in town to spread a message: Compassion is greater than greed.
We got a little write-up in one of my favorite a.m. newsletters, The Morning Rounds. I send out a few Tweets, and there stood the camera crew. I gave an interview with an overview of our purpose and we checked in at the security desk.
Smiling Vertex minders met us in the lobby – I think there were three, maybe two, public relations people, to escort us up the elevator. I gave Eli the petition and started snapping pictures. When we reached our floor, a serious Vertex lawyer informed us of a no-camera, no audio policy within the building.
“C’mon,” I said. “I’m his mom. Look how cute he is! I have to take a picture!”
Then we agreed to shut it all down and I busted out my notebook.
I’d asked a number of times but was not told in advance of the meeting who I would meet. I only knew it would be two public executives of the company but not CEO Jeffrey Leiden, the subject of my petition, as he was booked the month of October, or so the story goes.
“Who am I meeting?” I asked.
Two public executives: Jeffrey A. Chodakewitz, the Chief Medical Officer, and David Altshuler, the Chief Scientific Officer, I was told.
I prefer to know something about people before meeting them, but here I was going in blind.
Eli, flanked by the lawyer, three PRs and Amy marched into the conference room as I suppressed my iPhone camera trigger finger.
Inside the room, Vertex had arranged a nice lunch spread of sandwiches, sodas, and chips, and mac n cheese for Eli. There were coloring books, too. Thank goodness for “COUSIN AMY” the Eli wrangler.
I met another corporate communications employee and a government relations employee. Altshuler, an affable fellow, showed Eli that an entire wall was a dry-erase-friendly canvas. The atmosphere was pleasant and banter friendly.
Then we unfurl a 20-foot long petition on a conference table
I sat at the head of the conference table and set about the task of unfurling my petition, as Eli had abandoned our mission for the dry-erase wall.
Down the table it went. And out came the second section, which tumbled onto the floor.
Mr. Altshuler asked me how I’d printed it out.
“I’m a very resourceful person!” I responded.
I’d wanted to wring more time out of life to prepare for the meeting. I had much more to read, to learn, to understand. But I’d done what I could in advance of our trip.
We’d spent weekends since July packing T-shirts that paid for the trip. I work full-time. Mark works full-time. Eli’s disease care takes a good 20 hours a week. I’d taken Laila camping with her Girl Scout troop two days before we left for Boston . A damn pack of howling coyotes kept me up all night, I kid you not. And my God, there is something particularly terrible about trying to sleep in a sleeping bag as an adult. We returned, Laila and I, covered in dirt from digging for crystals on Oklahoma salt flats. I showered, packed, collapsed into bed, got up and got on a plane with my son.
Anyway, my point is, I had little time prepare, but only one question anyhow, and it was more like a statement.
My one request
Here’s what I said, if memory serves me correctly, since we were banned from recording, even in the name of accurate note taking:
“One hundred twenty five thousand people believe you are gouging our drugs. They think this company’s greedy. Tell me why we are wrong. Use numbers.”
Here’s how I remember what happened next:
Mr. Altshuler started talking about why he came to work every day, and a bit about his history. He’s quite new, about 18 months in at Vertex.
I appreciated the info, but suspected he was following a corporate script.
He’d pivoted to bullet points.
I spent a lot of time after that trying to pin down some numbers, since I was there for data that supported the usual claims: research and development is expensive. We have to charge this much to continue our work.
A few times, Mr. Altshuler mentioned there was a lot of data publically available. And he’s right. The company filings with the Security Exchange Commission contain quite a lot of information. As I said, I’d gotten through a lot, but not all I wanted to read ahead of our meeting.
It took a lot of doing to pin down from the team how much they had invested in the drugs.
The main numbers I received were from the corporate communications employee.
The company has existed for 27 years. It has produced three drugs. That’s taken a lot of failure, offered the CMO, Mr. Chodakewitz, and through failures, the company learns. But failing and learning is expensive.
I get it.
I took a moment to tell the executives that I knew how different Vertex was. Founded by pharma cowboy Joshua Boger, a brilliant refugee from Merck, it’s taken risks few companies would dare to take. The company is aiming high, going for cures and discoveries that aren’t exactly safe bets.
I know and appreciate that very much about Vertex. Mr. Altshuler mentioned that’s one of the reasons he came on board. The company is willing to take risks.
Circles and question marks
We went around in circles for a while as I tried to get a figure on what it takes dollar-wise to get a drug to market.
It went round and round until I finally said, “Are you saying there are no figures that exist on how much it took to create your drugs?”
The executives deferred to the corporate communications employee, who told me there is an accurate estimate from Tufts University that it takes about $2.6 billion per drug. The figure $9 billion was thrown around, too, as a ballpark for what it took to get Vertex to create three medicines: a hep C med that is no longer on market as Solvadi’s Gilead came around; Kalydeco, the $300K+ per year drug ($376,000 per year retail) approved in 2012, the year Eli was born, that helps a small number of people with a different version of CF than what Eli has; and Orkambi, the $259K/ year drug approved in 2015 that could help Eli.
I threw out quite a few follow-ups but my notes on each question tend to end with: “?”
As in, question not answered, so time to move on to the next.
Toward the end of the meeting, Amy sensed via her body language-reading abilities that the corporate communications and government relations employees were getting annoyed. She couldn’t see their faces, but they exuded irritation as they turned toward each other like I was taking up too much of their time.
I didn’t notice. If I had, I wouldn’t have cared. I’d lugged my son, his vest, his costume and my petition half way across the country to ask these questions in person.
The executives apologized, since their time was drawing short, but I kept talking.
One of the last questions I threw out was about a scenario that bothered me a lot.
It happened in 2014.
Four Arkansas cystic fibrosis patients required Kalydeco, the company’s signature discovery, to stay alive.
Medicaid refused to cover it, and the matter went to trial.
Following a two-year court battle, Medicaid lost; it was forced to pay.
Buried deep in a 2014 Wall Street Journal article is a tid bit that has gone widely unnoticed for two years.
During the trial, Vertex refused to provide the medication to the patients, who were severely ill. It’s right there in the 2014 article, just about at the point any reader would stop paying attention, and reported before Shkreli and Darapim, before Mylan and the Epi pens, before anyone cared.
I asked the execs to explain how that decision was made.
After all, “All in for CF,” the sign in the lobby said.
This alarms me, as a parent, that the “All in for CF” company let these dying patients languish as it waited to get paid.
My son could get sick, and as entities argue over who pays, his health could fail. He could die waiting for medicine. It’s a totally plausible scenario, the way the wind seems to be blowing.
The Arkansas scenario, the potential for it to repeat, it justified why I did all of this.
A pre-emptive strike on the struggles of future Eli. Orkambi, a two-drug combo that bumps lung function 3 percent in some, not at all in others, costs $259K/year. What are they going to charge for the 3-drug combos?
Vertex has promised grant program help for U.S. patients, but I disagree any patient should need a grant to cover a drug.
I object to grant programs, which have failed my family before
And grant programs have fallen through for us before, with another drug, Synagis, by another company. Synagis prevents a severe type of cold called RSV. My insurer refused to pay for the drug for Eli in 2013 and the supposed grant program wouldn’t cover the drug either.
The soul-sucking insurance battle got us nowhere. It crushed me. Hopeless, I didn’t even bother to ask for the drug in 14/15 or 15/16 during cold and flu season. Then my son got RSV and went to the hospital for five days this January, scared, crying and begging for us to take us home, subjected to needle stabs and invasive tests and God-knows-what bugs that live at hospitals. And then we paid another thousands-of-dollars out-of-pocket tab, our third big tab in three years, all when a drug existed to prevent exactly that.
Arkansas, though. Those patients were on the brink
Back to the meeting, back to the question: Arkansas. Explain that.
What followed, as I recall, was some muttering and looking down.
Amy remembered the corporate communications employee saying something like, “Things are different now.”
Jeffrey Leiden, the subject of my petition, brought home nearly $95 million between 2010 and 2015.
Here’s a little run-down on the other execs’ compensations:
Executive salaries are easy targets. How about the Vertex board members, who hold part-time positions? How much money do they make?
It’s a lucrative deal. In fact, Vertex board members are the second-highest paid among all companies in the S&P 500, according to a report released October 5 by Equilar, a Redwood City, CA-based board recruiter and executive compensation consultant, the enterprising Arlene Weintraub reported.
The median salary of a Vertex board member, who again, works part-time, is 1.23 million per year, reported Weintraub for industry publication Fierce Pharma.
But, shrug, they just didn’t have the money to give compassionate use medication to the four dying patients in Arkansas who suffered horribly without it for two years.
I didn’t think of it in the moment, but afterwards, I contemplated:
Where was the Cystic Fibrosis Foundation while those women were dying awaiting drugs? (???) (!!!)
In November of 2014, the same year those sick patients suffered as entities fought over who paid, the Cystic Fibrosis Foundation, the charity that feeds Vertex millions of dollars to stoke research into this rare and fatal illness, sold the rights to Kalydeco to a hedge fund for $3.3 billion.
But if I’m not mistaken, the women languishing during the trial didn’t get Kalydeco from the CF Foundation either.
That would suggest no one at the foundation took a stand for them.
So who is going to help us, then, the next time this happens?
It appears we’re on our own.
This will keep happening
And it will happen again if nothing changes and our medication costs keep rising. Insurers are going to find every reason not to pay. During those battles, people will get sicker. People will die.
You can point fingers one way or the other, but either way, in the end, suffering people will only suffer more.
— thisiseli (@hithisiseli) October 12, 2016
I thought the point of medicine was to ease human suffering.
Am I missing something here?
In conclusion, my meeting accomplished nothing.
I’d love to tell you otherwise, but I can’t.
There were no promises made, no decisions adequately explained.
I learned the company plans to expand its technology to other disease areas. Multiple sclerosis. Cancer. Neurological disease. Sickle Cell anemia. It’s as exciting as it is terrifying
Because to hold up life-saving medicine like carrots in front of the sick and dying, just out of reach, is cruel. That’s what happened in 2014, during the Arkansas trial. For two years.
It’s so cruel it should be criminal.
How is it not criminal?
And this will continue, unchecked. Society doesn’t care. We’re rolling over. We’re half dead. We’ve given up. It makes me sick.
I’m sorry to report it, but that is the conclusion I reached.
I accomplished nothing.