WOW. 3,000 people agree that price gouging charity-funded rare disease drugs is wrong

I saw something I didn’t like and I spoke out about it.

That’s the beauty of living in the U.S of A.

More than 3,000 people agree that the CEO of Vertex, Jeff Leiden, should bring the cystic fibrosis community’s drug prices back into the realm of what’s reasonable for people to pay, not insurers and governments, ie, “what the market will bear.”

This is the petition I made, which you can click to sign, bottom right 

I spoke out because I’m worried the next generation of medicines we need to save Eli’s life won’t be affordable for us or for my son at the rate things are going. I disagree a company should be able to price a year’s worth of drugs the same as a house would cost in many markets.  I found out that children in at least two developing nations are not getting drugs U.S. charity dollars funded to make their lives better. It’s not surprising, I guess, if you accept “that’s the way things are.”

I have trouble shrugging myshoulders when I know how devastated I’d be if I couldn’t help my child. If medicine is not affordable it’s like it doesn’t exist at all. Isn’t saving people – and not just those in rich, developed nations – the point?

I’m not anti-pharma. Without Vertex and companies like it, my son would have no chance. I love pharma. I love discovery and innovation. By all means – get back what you’ve put in and more so the research can continue and we can cure this horrible disease together.

But be reasonable.  Everybody pays when the ratcheting up of drug prices is seemingly as boundless as this universe we inhabit. Middle class taxpayers like my family are strapped. Our premiums and deductibles are rising. State medical programs funded by taxpayers that provide these drugs to the poor are hurting, too.

I’m pro logic and humanity. Can’t companies be this way?

Dad and Eli


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