This is Eli

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

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.

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).

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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:

“Vertex CEO Jeffrey Leiden: Stop price-gouging our charity-funded drugs.”

I checked with a constitutional lawyer three constitutional lawyers; my petition is protected political speech.

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:

eli-hamilton

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.”

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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.

Curious.

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.

Explain Arkansas

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.

I noticed.

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.

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Eli pumping antibiotics after his RSV bout

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:

VERTEXsalaries

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.

I thought the point of medicine was to ease human suffering.

Silly me.

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.

I’m sorry.

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jimmorinpharma

(Used with permission of James Morin of the Miami Herald)

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23 thoughts on “I confronted my chronically ill son’s drug maker. Here’s how that went:

  1. Lisa Rushing says:

    Im so sorry that those jackasses dodged your questions and didn’t give you any real answers! To travel all that way….for nothing. This is where you need to get the media involved and tell them what has happened and how they were not forthcoming and had no decent answers about price gouging the medicines. Explain that we’re not going anywhere and this isn’t over. Make them look like the jackasses they are!!!
    On a lighter note. I loved Elis outfit! He looked adorable ❤

    Liked by 1 person

  2. Ana says:

    Never give up hope. There’s more than one way to skin a cat. Sometimes you have to start from the inside. I will pray for Eli. God bless!

    Like

  3. Debbie Schaadt says:

    I think you accomplished a great deal and are beyond gutsy for having done this. Pharmaceutical companies care about the bottom line and their shareholders, not about sick people, sadly and disgustingly. The reality is you have gotten publicity for this. That alone has to be worth something. Your son does look adorable.

    Like

  4. Larry Manter says:

    Maybe, just maybe, Hillary Clinton can do something about it. A long shot but …

    Like

  5. kenxtc says:

    Dear Juliana, you and Eli are very brave. I wish for you both that things improve. Keep fighting.

    Like

  6. tommie balizan says:

    You didn’t fail. You did the best you could and you should be proud for doing everything you can. Unfortunately there will always be greed but just know there are people praying for you and your family. My grandson has CF and takes the kalydeco. Believe me we know the hardships. Sending huge hugs and prayers your way!

    Like

  7. Rónán Ó Scolláin says:

    This is absolutley awful. While the presidential candidates exchange insults and decide on who is going to be tougher on foreign policy these are the bread and butter issues that both candidates will abdicate responsibility on that actually matter. The USA is a corporation’s heaven and thats why as a country it is hated across the globe. People before profit should be the idea that drives any nation on. The US politicians care only for the free market and for the corporations who exploit people.

    Im sorry that this was not the outcome you expected nor do I see it changing. (Even the way you can appeal in court is rigged based on wealth). Until the people take control en masse, it’s another day another dollar. Land of the free… if you are rich.

    Liked by 1 person

  8. Michael Lorello says:

    I fully agree with Lisa. Get the national media involved. This can ride on the coat tails of the Epi Pen story that shows that not just people with allergies are being held for ransom. A quick calculation using the number of 30000 US cars of CF: If they charged $10k per year for that medication and got it from only half of the patients (15,000), the gross would be $150 million which is a pretty healthy research budget. The numbers and their secrecy with them speaks volumes.

    Liked by 1 person

  9. Kathy Kelley says:

    Juliana, you did accomplish something. Maybe not the very thing you wanted and need, but you made 125,000 aware, think and care. It’s not enough, but it IS something.
    The story is not over.

    Like

  10. I am so sorry you were stonewalled!!! Not surprised. Big pharma is all about money..that’s all. And all these foundations that raise money for research should be using their money to help patients. And BTW no big Pharma ever wants a cure!!! I suggest you contact Dr. Art Mathias at Wellsprings in Alaska or Dr Henry Wright at Be In Health in GA. They have had a of success in healing various diseases…getting to the root cause. Praying for you.

    Liked by 1 person

  11. JJ Faseler says:

    Thank you for working so hard and taking the risks you have taken. You are an inspirational mother.

    Liked by 1 person

  12. Rose Castro says:

    I think it’s great that you TRIED! So many Americans have just given up. These corporations control the government regulators, who do nothing to try and control the exploding cost of medications. You should pat yourself on the back for your effort. To me, the really sad part is that the CF charity seem to just be funneling money to Vertex, and getting nothing in return for its patients. Has anyone confronted the people running the charity? How do they justify giving millions to Vertx and getting nothing for the patients in return? Best of luck to you and your family.

    Liked by 1 person

  13. Lisa Rushing has a great idea with getting the media involved. I don’t think your meeting was fruitless and please don’t give up.
    Whether it’s the CF medications, the ALS medication approvals or epipens, they do need to know that we’re not going away!
    Your son is beautiful and I wish him better health very soon.

    Liked by 1 person

  14. Gail says:

    Are you kidding me!!! You totally accomplished something – you educated 125,000 people and beyond! As said above, big pharma is big business…I am actually surprised Vertex didn’t use cute Eli’s picture in some sort of advertisement. Be proud of yourself and pat yourself on the back, you may have accomplished a lot more in the long run than you think…

    Liked by 1 person

  15. Linda Oswald says:

    I am so sorry for your disappointment, but so admire your hard work for Eli and others dealing with CF. your account of your meeting is interesting and appalling. We so often hear that drug prices are high because of research costs, yet this company could not or would not site those costs. I am also disappointed in the CF Foundation funding research, but apparently unconcerned with access to the results of that research for patients. Don’t think I will make or encourage others to donate there

    Liked by 1 person

  16. So sorry that Vertex drug maker company is a Dickhead. This is a story for “60 minutes” if I ever heard one. It’s a great public interest story! Please send the story to them and other major news outlets. If “60 minutes” runs it, it may embarrass them into action. Also send to – Times, Newsweek, CBS, NBC, ABC, CNN, MSNBC, (Forget Fox, who is probably on the side of the drugmaker). Also – New York Times, Wall Street Journal, Chicago Tribune, LA Times, USA Today, Christian Science monitor, BBC News.

    Liked by 1 person

  17. Sandy Towery says:

    Dear Eli’s Mom, I hear your frustration. You did accomplish something. You poked them with an angry stick! You are a water pistol against a tommy gun for sure but I think it is time to pressure the members of the board of directors. Who out is the world knows them and can comment on this situation to them? Do none of them have a conscience?

    Liked by 1 person

  18. guttutiwari@yahoo.com says:

    You have changed my thinking. I am horrified to hear about the big pharma, but even more so about the CF foundation. Their lack of participation in helping the two families. I will be emailing them and asking some questions.

    Liked by 1 person

  19. Michelle says:

    If society didn’t care about your plight no one would have signed your petition or bought your t-shirts. Just because corporate executives are greedier than they are compassionate doesn’t mean the rest of society shares their priorities. Don’t throw in the towel, and don’t become so burdened with your crusade that you have no time or energy to enjoy your son. The people in our nation who have bought into the idea that corporate greed is not only admirable but deserves to be rewarded with deeper and deeper tax breaks and weaker and weaker regulation will wake up one day and realize that they’re shooting themselves in the foot. Hopefully sooner rather than later. Hug your son for me.

    Liked by 1 person

  20. CallMeLee says:

    A good question (among many) is: What is the point of spending billions of dollars on a drug that nobody will be able to afford if the typical model (of recouping R&D, marketing and other costs) is not changed?

    Liked by 1 person

  21. Martha Clark says:

    Bless your precious heart and those of your husband and Eli! He is incredibly handsome! I know about big pharma to a much smaller degree than in your heroic fight. I have multiple allergies and must carry an Epi-pen. I hope the one I have will last a long time. That one cost $300; however, a new one will be $600. All because of a new company CEO who decided arbitrarily to raise the price. When asked why, he replied, “Because I can.” It’s beyond outrageous how much financial abuse the American middle class must endure!
    My congratulations, prayers and love to you for being the best, most courageous mom, and to Eli for being a brave, strong little “Hamilton.”

    Liked by 1 person

  22. arianna2316 says:

    I am a 25 year old female with Cystic Fibrosis, from Maryland. I went to Hopkins for 25 years. In adult care- my care went down hill two years ago; I was symptomatic but was told my lung function was too high for my symptoms to be considered concerning. The nurses became annoyed with me reporting symptoms over the last year; they told me that no other patient called in as much as me and that since I was 25 I should be able to keep up with all of my treatments and not require so much attention. For the first time in eight years I required a Picc line and inpatient stay last February. My infection still wasn’t fully taken care of so I needed another inpatient stay in July. The nurses bullied me and still minimized my condition even though I lost so much of my lung function (108% down to 88%). I asked the doctors to investigate the mistreatment and they told me no because everyone is friends and their friends wouldn’t do that. I filed a complaint to patient relations to have someone advocate for me and suggested looking into other clinics- then the clinic terminated me as a patient. I have no other clinic in Maryland to go to. My lungs are back to bad condition. The CF Foundation did nothing for me. Yay me and Hopkins and CF Foundation; what a team! This is what we all fundraiser for- this awesome support.

    Liked by 1 person

    1. j&m says:

      Oh my gosh that is terrible. So wrong!!!! I’m sorry . We have to look out for each other!

      Liked by 1 person

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