Stop price gouging our charity-funded drugs

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My life changed for the better the second my son Eli entered my world. But shortly after his birth, we learned that Eli had cystic fibrosis, a fatal genetic lung disease. Without the right drugs, his life could be cut drastically short. So when I found out Vertex Pharmaceuticals had finally developed two Cystic Fibrosis drugs that could help extend his life, I was thrilled. But then I heard their price tags -- the cheapest one costs $286,000 a year. I was dumbstruck. How could my family -- how could any family, for that matter -- ever afford them?

What’s worse -- supporters of the Cystic Fibrosis Foundation (CFF), like myself, have donated more than $75 million dollars to Vertex to fund its development research. We thought it was a partnership. We thought we were working toward the same goal -- to find a cure for a deadly disease. But I, like others who had been praying for these types of drugs, now feel betrayed.

I am asking Vertex CEO Jeffrey Leiden to reconsider these unconscionable prices for drugs literally developed on the backs of the patients they claim to want to help. Vertex would not have discovered these drugs if not for the help of the CFF and others who cared about finding a cure. But now they have turned around and decided to charge more than the cost of a house for just one year’s prescription of this potentially life-saving medication.

I am not the only one crying foul. In fact, a group of prominent cystic fibrosis doctors are urging Vertex to stop its “egregious” pricing. These drugs have the potential to treat tens of thousands of people, but they are priced for millionaires, people like Vertex CEO Jeffrey Leiden who earned almost $46 million dollars last year.  

We are grateful to Vertex for creating invaluable medicine that will help our loved ones live longer, more fulfilling lives. But if we cannot afford it, it's as if it doesn’t exist at all. These prices strain taxpayers and the healthcare system, keep drugs completely out of the hands of those suffering from CF in developing nations and hold the potential to bankrupt families. It’s time for Vertex to switch to common sense pricing so that we can all have a chance at a healthy life.

Please consider signing my petition on behalf of my son, Eli, and the up to 100,000 people around the world who share his lethal illness. And please share and urge your friends to sign through social media.

Thank you,

Juliana Keeping
Journalist, blogger and mom