“I have been at the forefront of ludicrously priced drugs my whole life. I was 4 when the drug Ceredase got FDA approved, and that was the drug that broke the bank and really set the bar for how much drugmakers could charge for drugs. My father had to leave his law firm because the firm refused to cover me, because the drug was too expensive. My mother had to rush to get a job with our local school district because that was the only system that would pay for my treatment. Ceredase was eventually replaced by a genetically-engineered version which had massively lower production costs, but the maker (Genzyme) never lowered the price. Not in 20 years.
I have grown up with the practical and emotional challenges of high drug costs. It has affected my career choices, my sense of self-worth, everything. I’ve become very successful and I am fortunately very healthy, but I still have this constant sense of fear as to what will happen if I lose my job or something happens which puts me in danger of losing insurance, because at $300,000 per year, I could never pay for it myself.”
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The prescription drug pricing system in the U.S. is rigged against patients. We are fighting to change that.
Patients For Affordable Drugs will collect patient stories and amplify the voices of patients to make policymakers understand the heavy toll of high priced drugs.Share your story