A cystic fibrosis drug price spiked 9000 percent one year to the next. These pulmonary doctors are raising hell, but will anybody listen?

Did you hear about that cystic fibrosis drug that spiked in price 9000 percent from one year to the next? Neither did I.

We need to wake up. This is happening. It’s going to happen until it’s curtailed by humanity and common sense and better laws. It’s going to kill, real quiet like, while no one is paying attention and executives line their pockets.

An editorial that ran Sunday in The Pittsburgh Post-Gazette talks about the insane 9000 percent price hike, and other suspect shenanigans.

“The problem of runaway drug prices has not been limited to new scientific breakthroughs like Kalydeco and (perhaps) Orkambi — even previously inexpensive drugs are now being priced out of range for some: Doxycycline, an antibiotic used for decades for CF (and other conditions), went from $20 a bottle in October 2013 to $1,849 by April 2014, a 9,000 percent increase.”-Drs. David Orenstein and Brian O’Sulliavan.

Right on.

The docs who wrote this have become my e-pen pals

Like me, the docs see drug prices – in particular our rare disease drug prices – ballooning out of control.

I tracked them down because they were among five lung docs who in 2012 signed a protest letter that made it into the hands of a Milwaukee Journal Sentinel reporter covering the Cystic Fibrosis Foundation’s venture philanthropy model. While Eli was just a wee guy recovering from a gut surgery in the hospital in late 2012, the FDA approved a cystic fibrosis drug called Kalydeco. It helps a different genetic version of his disease and targets the way the cells operate, unlike all other CF discoveries, which address symptoms. It costs upwards of $300K/ year – that is $900/day- Next up came Orkambi, which bumps lung function a small percent for Eli’s diseaseand costs $259,000 per year.

Armed with frontline details from the docs, I gave a speech in protest of CF drug prices and launched a Change.org petition a few weeks back. It now has more than 93,000 signatures.

I also bugged my new doctor friends to take their solid points out of medical journals and push them into the mainstream.

Cuz I’m pushy.

My hope is these parallel efforts will bump my petition up to 100K signatures, one for every person in the world with Eli’s the disease.

Eli turned 3 over the weekend.

The next day, The docs published a smart editorial.

I’m over here like: Eli this editorial is the best present ever. Long live freedom of speech
Eli: Gimme my Tonka chopper mommy.

Give it a read.

Sign my petition if you haven’t already!

Right on.



5 thoughts on “A cystic fibrosis drug price spiked 9000 percent one year to the next. These pulmonary doctors are raising hell, but will anybody listen?”

  1. I just filled a prescription for Doxycycline to fight an infection last August 2015. I bought it from Costco and only paid $38 for 14 pills.


      1. Exactly. Someone’s paying it, and the drug companies are still loading their pockets with outrageous amounts of money. Whether you pay it yourself or your insurance co. pays it, someone is, and it’s a problem. A big problem. These drugs should not cost over a quarter-million dollars a year. If they want to charge these prices, they we need to cut all funding for them. They can pay for the research themselves.


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