Bernie Sanders hates the pharmaceutical industry. Or, at least, he sure sounds like he does. Hardly a week goes by that Sanders isn’t tweeting about how awful, deceitful, and downright criminal the industry is. He has called the industry “the biggest bunch of crooks in this country.” He has also said, several times, that “The business of the pharmaceutical industry is fraud.” (At the risk of stating the obvious, it isn’t. Their business model is developing life-saving and life-bettering drug therapies.)
Sanders is almost the very definition of the old man who shakes his fist at clouds. Except he’s a sitting U.S. Senator. And, from his perch there, he can do a lot of damage. Several months ago, in fact, he did. In October 2016, Sanders tweeted the following about Ariad Pharmaceuticals, which raised the price on a drug called Iclusig by about 27% over a year:
This tweet caused Ariad’s stock price to fall by $387 million, a 15% drop in value.
While demonizing Ariad for its “greed,” Sanders didn’t bother explaining why or how Ariad was able to raise its price by 27%. Simply put, there’s no competition. And, there’s no competition because Ariad followed the laws put in place to spur development of drugs like Iclusig.
Iclusig is approved to treat two extraordinarily rare forms of leukemia that appear in only 1,000 to 2,000 patients a year. It’s considered an “orphan drug,” which refers to drugs that are approved for rare diseases and which are awarded a 7-year period of exclusivity under a law called the “Orphan Drug Act.” What this means is, the FDA cannot approve any competing drug products for seven years after the drug is approved.
The reason for Orphan Drug Exclusivity is simple: some diseases are so rare that there’s no financial incentive to develop drugs to treat them. By getting a period in which they’re guaranteed no competition, drug companies can recoup the costs for developing the drug and, yes, turn a profit. In other words, the purpose of Orphan Drug Exclusivity is to allow drug companies to charge what they want without any competition to bring the price down, so that drug companies will want to make these life-saving drugs.
Sanders pulled the same stunt a week or so ago with Marathon Pharmaceuticals and its orphan drug, Deflazacort, which is used to treat a genetic muscle deterioration disorder affecting about 15,000 Americans.
Sometimes, the lack of competition isn’t due to orphan drug exclusivity, but due to patents covering the drug product, for example, the demonization of Mylan for raising Epipen prices and the demonization of Valeo for raising prices on its opioid overdose injector. In each of these cases, the drugs themselves are old and are available from other manufacturers, but the companies have patents that give them the right to exclude competitors from using their injection devices. Patents, like Orphan Drug Exclusivity, exist for a reason—to promote innovation by giving companies a right to exclude competition in exchange for their work.
In each of these cases, the company is doing what it’s permitted by law to do and, in fact, has been encouraged by the law to do. If Sanders doesn’t like it, he can try to actually DO something about it, like change the law on Orphan Drug Exclusivity or change patent laws to make patents harder to get and easier to invalidate. (I have argued for that here.) But doing things like drafting, arguing for, and passing legislation is hard work and, as we all know, Sanders has a strong aversion to doing work, given that he was kicked out of a commune for slacking. So, instead, he sits on his perch and points the finger of death at any drug company that is attempting to turn a profit, accusing them of fraud and thievery.
There are ways of introducing competition into the pharmaceutical industry that don’t require the government squeezing the innovative life out of it. Sanders will never dare go there, which tells you all you need to know about him.
Last night, around 6:30 p.m., I heard the familiar chime of my phone notifying me of a text message. It was from my son Jake, and I smiled, because noting the time, I knew what it would be. I opened it and saw the familiar dark outline of tree branches, highlighted by the powdery blues, pale pinks and corals of the sky framing them – as seen from our back porch.
It was the sunset. And on every clear day, Jake sends me a picture of it. Afterward, he always runs into whatever room I’m in and exclaims “Isn’t it pretty? The sunset is SO PRETTY!” and then he asks me for a high-five before running back out again, off to another adventure.
Although he’s been doing this for a long time now (as long as he’s had a smartphone, so more than two years), last night’s picture moved me to tears. You see, the very moment he sent me his sunset picture, I was looking through his baby album, reminiscing in preparation for today, his 17th birthday.
Seventeen years ago today, following a blur of literal blood, sweat and tears, Jake made his debut into this world, all 9 pounds, 10 ounces of him. Within minutes of his birth, after they quickly cleaned him up and thrust him into my waiting arms, he was staring at me intently. His dark blue eyes bore right into mine, as if he was desperately trying to send me some kind of message…
That moment stands out to me starkly, because I’ve been around newborn babies many times, including Jake’s big brother Austin and his little sister, Kate. I have never in my life seen one that young – just minutes from birth! –stare so intently. As I gazed back into his eyes, tears of love falling from mine, I had no idea that just two years later, he wouldn’t look at me at all.
* * *
Jake has autism, a developmental disorder that impairs one’s ability to communicate and socialize. As with many things in life, such as love, feelings about pineapple on pizza, or political persuasion – it exists on a spectrum. Jake happens to have a more severe form. Although he is verbal, loving and affectionate, he has enormous difficulty in communicating, and is also intellectually disabled, with an IQ of 49. It took him many years to finally make eye contact with others, and it is still hard for him. But far from being a victim, Jake has a more successful and happier life than almost anyone I know.
I’ve learned more life lessons than I can count from Jake. In honor of his birthday, I’d like to share some of them with you.
You’re never too old for Winnie-the-Pooh. Jake has loved Pooh from the time he was a baby. To this day, he never goes to bed without his beloved, well-worn Pooh by his side. He loves Star Wars, Avengers, video games – all the things his peers enjoy, but he’s just as likely to watch the latest adventures happening in the Hundred Acre Wood. Whenever he does, I’ve learned to stop whatever I’m doing and join him, and it always puts me in a great mood.
Take pride in what you do, even the small things.
Let people know you care about them with thoughtful gestures.
Dance even when people are watching. There’s a cutsie quote a lot of people have shared on social media or even framed in their homes: “Dance like no one is watching.” Well, what’s the fun in that?
Be kind, be positive, and persevere. Life can be hard, and it can hurt. But that’s never an excuse to be unkind or to whine and give up. Imagine for a moment the tremendous challenge of attending a huge high school with a disability like autism. Loud noises, bright lights, boisterous students everywhere: these are all things that are physically painful to someone with autism. Then throw in trying to navigate the treacherous social maze when you don’t understand 99 percent of the social cues everyone else takes for granted. Jake has faced all of this with courage and a positive attitude. Three years in (he’s a junior) and what an impact he has made! He even got a standing ovation from his peers just last week. If he can do it, ANYONE can.
Look around. You can probably find something that makes you happy no matter where you are. Even in traffic!
That thing that scares you. Do it anyway.
Get down on the floor and play with your pets. It’s good for the soul.
Appreciate every sunset. Or every sunrise. Or whatever enchants you. Never lose your sense of awe and delight in the world. Although Jake has been sending me sunset pictures from our backyard for years, I cried when he sent me the picture last night because the full impact of it hit me, all in one moment. This child of mine, who looked so intently into my eyes after he was born, only to later lose that ability, sees the world with new eyes every single day. And that might be the most important lesson of all.
Just a gaggle of people from all over who have similar interests and loud opinions mixed with a dose of humor. We met on Twitter.