In response to Paul Pescatello’s opinion, (Connecticut price controls will stifle biopharma innovation), Connecticut residents desperately need the Governor’s bill, HB 6447, to limit out-of-control drug price hikes. The bill isn’t price control; it’s a small step that balances innovation with affordability.

Jay Gironimi

Anyone who says you can’t put a price on human life hasn’t been to the pharmacy. Drug prices are too high, and those prices are being set not by hopes of therapeutic innovation, but in deference to shareholder value.

Pharmaceutical companies are not the only ones at fault here. As premiums and deductibles continue to rise, I don’t see any health insurers on the breadline. But simply because they don’t shoulder all the blame, doesn’t mean they don’t deserve some it.

I have cystic fibrosis and cystic fibrosis related diabetes. The specifics aren’t important, but I can’t eat or breathe unless I take medication —currently somewhere between 10-12 daily meds, depending on the weather. All told, the price of keeping me alive is about $325,000 a year, or $890 a day.

That cost is mostly hidden from me, my share of it distributed among the co-pays, deductibles, and premiums in my pretty good employer-based insurance.

January is always a tough month for people with diseases, because insurance deductibles reset. This year, that meant my first refill of a drug that helps open up my airways ran me a crisp $1,325. But it’s been far worse.

In 2008, I had to put $1,900 on my credit card for a single month’s supply of a drug that thins the mucus in my lungs so I can breathe. I held out until I was coughing up blood. That drug has no generic versions and no competitors and its price has doubled since then.

The Governor’s bill would only tax any drug price increase over inflation plus 2 percent. This law would help avoid excessive price hikes years after the company has recovered all their innovation costs. Understandably, pharmaceutical companies are not thrilled.

Drug companies are very profitable. From 2000 to 2018, U.S. drug company profits were more than double profits for other large companies. There is plenty of room for both innovation and affordability. Other industries have to balance the two, but drug companies have patents on products we literally can’t live without. Our misfortunes build their fortunes.

Pescatello argues that lowering drug price increases would reduce therapeutic innovation. But fair drug prices could increase innovation. What’s the motivation for companies to innovate when they can just hike the price of drugs they’ve already developed?

I agree with Pescatello that the COVID vaccines are a tremendous innovation. I’m glad to have received the vaccine myself. But it’s not a charity project; it’s an innovation that came with a federal head start in funding for earlier foundational research, vaccine development costs, and guaranteed orders costing taxpayers billions of dollars.

I am pro-pharmaceuticals. But I do not believe that the price of keeping me alive should be over $300,000 a year, especially when that “innovation” is already paid for, often through charity, subsidies and taxes. I think HB 6447, An Act Creating the Covered Connecticut Program to Expand Access to Affordable Health Care is a step in the right direction. The “innovation” will be worth nothing if patients like me can’t afford it.

Jay Gironimi is the author of Can’t Eat, Can’t Breathe and Other Ways Cystic Fibrosis Has F#$%*d Me. He lives in Groton.

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