Published in CommPRO.biz 2013.07.24

The Teeter-Totter

The Cystic Fibrosis Foundation finds itself running back and forth on a seesaw of its own making. It runs to the one end to care for those stricken by a horror story disease. But then it does a swivel and heads for the other end to collect its share of $307,000.00 some of those dealing with the coughing, wheezing and gasping desperately for breath pay every year to ease their suffering. The Foundation put up $75 million dollars to develop Kalydeco, the $307,000.00 a year drug sold by Vertex Pharmaceuticals. A drug based on NIH (National Institutes of Health) research funded by our taxes.

Vertex is quick to insist they have invested over five billion in R&D since going into business in 1989, with a “significant” amount on cystic fibrosis. It would be hard for them to be any less transparent than that. Given the formula the Pharma companies use to calculate their R&D costs, this doubletalk leads us to believe Vertex invested little or none of their own money directly into Kalydeco. Vertex priced it, “based on how well it worked in patients and the cost of developing it.” What? In other words, whatever the market will bear.

The Cystic Fibrosis Foundation’s share of the booty is secret. Best guess? Under 10% of the $307,000.00 Vertex collects each year from each and every suffering patient that needs this drug. And what are they doing with their share? Is it given to help folks pay for the drug? No, the Foundation is too busy looking for ways to invest in other new drugs. Did it ever occur to them to demand the right to look at Vertex’s books? To limit the cost to patients? Those seem like minimal demands for a $75 million dollar investment.

Oh no, no, that’s a “deal breaker.” What deal? They got no deal. Just hand Vertex most of the bucks they need to bring the drug to market for a paltry share of the revenue? Here’s a deal. Take their $75 million, add it to the NIH break-through and watch dozens of drug companies hungry for a winner jump for it. Anyone could craft a better deal than Vertex gave the Cystic Fibrosis Foundation.

Speaking of deals, America deserves a better deal on drugs. Canada has 10% of our population –less than the State of California– yet they pay a fraction of what we pay for drugs. Why? They negotiate lower prices; an option Congress denies us. Big Pharma pours a few million in the pockets of our representatives in the Congress for a deal allowing then to reap billions. Ethically, morally, there is no excuse for this insanity. No excuse for the Pharma sector to drive up the cost of health insurance, our taxes and out-of-pocket costs for drugs. There’s no excuse for the Congress to license the drug companies to rip off every American.