This is Eli

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


My petition protesting the prices of the latest round of charity-funded cystic fibrosis medicines, Kalydeco and Orkambi, which wholesale in the $200/$300K per year range, now has 64,610 signatures.

I”d really like to go for 100,000, the estimated number of people in the world with cystic fibrosis, according to the UK’s CF Trust.


Children in small and developing nations aren’t getting the latest medicines, or even those created 20 years ago, in some cases. The cost of our CF drugs are too huge a burden on government health systems. That should change.

Because: “Drugs that are lifesaving ought to be affordable..”-Francis Collins, director of the National Institutes of Health.


Right on, Francis. I’ve enjoyed reading the comments on my petition. I’ve also heard back from Vertex, and I’ll make sure to write up the company’s point of view in my next post. But for weeks I’ve collected an assortment of comments. Those weighing in have kids with CF, know someone with CF or have lost someone with CF. I’ve heard from people who struggle to afford multiple sclerosis medication, drugs for crohns and other chronic illness. I’ve heard from people who love people like that, or who watch others struggle with the cost of drugs, or who just want things to change because they feel medicine is a human right. I’ve heard from pharmacists and doctors and nurses who just don’t like the way things are going from the ground. A number of people report being driven into debt by the cost of medications.

Here are their thoughts:

“my sister goes through the same issue – her son has crohns – it has destroyed her credit and they struggle.

Eileen Keck, Sound Beach, NY

“I’m signing because I am in the same boat with meds I need to treat Wilsons Disease. The costs have skyrocketed from $250/mo to $5,000/mo for a drug that’s been in existence for decades. Not nearly the price tag you face, but still indicative of a growing and concerning trend.

David Hardegree, Kennesaw, GA

“My best friend’s mom died of a similar disease: sarcoidosis. And it was very traumatic for me to see her die slowly…not only because she was sick, but because of her grief of not being able to afford the medications, the treatment and the equipment she needed (oxygen tanks, CPAP device, wheelchair, etc.). She got diagnosed as an adult, while her son was in his last year of college. So my friend had to drop college and go to work to make money to take care of her during her last years. When she died two years ago, the bills left were so big that he hasn’t been able to go back to college yet. He still has to work two jobs and during weekends to be able to cover for all of the debt that his mother’s treatment left. Not to mention all of the past due bills of water, electricity, mortgage, etc. that he has had to take care of. He even had to surrender his car to the bank and use his mom’s old beat up car to be able to go to work. But this car is in really bad shape and keeps breaking down. It’s a stupid vicious cycle that never ends. And I don’t want to see more youngsters, that could be in college studying a career, having to end up like my best friend. It’s incredible how insensitive these companies are.

Joan Laureano, Arroyo, PR

“As a physician for the past 20 years, I can’t stomach the personal tragedy of people being forced to suffer and even die due to the greed of corporate interests, not to mention the toll to society as a whole as we treat people for long term complications of diseases for which there is a better choice. An ounce of prevention, etc….

Michel Hammond, Jackson, MO

My son has G551D and is just over 2 years old now. He should be getting Kalydeco but we can’t afford it until it is approved by the NHS. He has had to be pulled from school to avoid further hospitalisations. I beg you to make this drug affordable. Not just for him, but all of the kids in South Africa and other parts of the world whose governments will never fund this drug. They deserve to live. My son deserves to live.

Heather Boxer, Ashurst wood, United Kingdom

My youngest son also has cystic fibrosis. Along with Juliana we appreciate drug companies researching and making drugs available. However, to charge such an exorbitant price is unethical and cruel to people and their families that need the drug . The CF foundation helped pay for the research,now it appears Vertex pharmaceuticals is “double dipping” by charging such an exorbitant amount. Please show compassion, decency, and humanity towards families already suffering because of CF

Mike Richardson, Shelbyville, Tennessee

“Not only do I not take child deaths well, but this actually sounds like cheating on a deal. This is barbaric.

Diego Diaz, Ashburn, Va.

“I believe that when companies accept money from non-profit organizations to help in developing medicines, that when calculating the cost of the development for the purpose of setting the price of that medicine, that donated money should be subtracted from the cost.

Heather Neal, Cedar Hill, MO

“If Vertex Pharmaceuticals did in fact get much of its research funded by charities, then they owe it to everyone to price it reasonably, covering the cost to produce but not research costs that were covered by others.

Jo Brooks, Enterprise, AL

“How could CFF give that much money to Vertex without requiring reasonable pricing in return?

Trevor Robinson, Austin, TX

“My 4 year old son Charlie has cystic fibrosis. He carries R117h 7T. This drug has been proven to work on his genotype but I was told recently by his CF consultant that the UK’s NHS can’t afford it for him because of its high price. Knowing there is a drug out there that could potentially add decades to his life, but we have no way of accessing this due to its ridiculous cost, is the worst feeling in the world. This greed *has* to stop, this beyond cruel for a pharmaceutical company to sit back and dangle the proverbial carrot. It may be business but it’s not ethical, it’s evil. They’re playing with lives.

Nikki Jackson, Manchester, United Kingdom

 “Orkambi could be difference between my baby having a normal life when he’s older. By Vertex putting an unattainable price on Orkambi it may as well not exist as a drug for us, as the NHS in the UK Is under huge cost strain already. I want my baby to have a life unlimited by CF and Orkambi can give us this but only if the NHS can fund it for CF sufferers in the UK.

Esther Valentine, Goring, United Kingdom

“I’m a mom of a transplant kid and my copays for my son’s transplant meds have driven me into thousands of dollars of debt. I share your frustrations!

Deborah Biallas Sackett, south windsor, CT

I have cystic fibrosis and face the real pain emotionally and expenses of this diesease everyday.

Jessica Ramirez, holland, MI

“I’m signing because I am a Pharmacist of 35 years and have seen this sort of corporate misbehavior many times in recent years. The public should be outraged.

randy lawson, pilot mountain, NC

 “I have two children with CF too. I feel your pain. Its morally bankrupt what the pharmaceutical companies do to us.

Lj berkeley, El Paso, TX

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