In my interview with Nathan Vardi, the author of “For Blood and Money: Billionaires, Biotech, and the Quest for a Blockbuster Drug,” we meet a sensitive and very readable finance writer with years of experience covering wealthy venture capitalists in all their areas of investment.
So why did he choose to write a book on this particular topic important to those with chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL / SLL)?
Because what he found most compelling in his research was the investors’ role in drug development. And of all the pharmaceutical stories that he covered, the one that stood out to him as the most powerful was also the one that resulted in a sea change as to how CLL / SLL is treated, namely the development of PCI-32765 and ACP-196, now known respectively as ibrutinib and acalabrutinib. Those first two covalently BTK inhibitors revolutionized the management of CLL / SLL. They have given hope to thousands of patients that had none and, in the process, made millions and sometimes billions of dollars for those who saw their potential and stuck with what seemed improbable successes.
To his credit, Nathan dedicates the book to the brave patients who enter the trials, without whom there would be no progress.
As he says, it takes many to bring a drug to market.
There must always be the patients first and foremost.
Nothing happens without many millions of dollars being risked by venture capitalists in the hope of high, sometimes astronomically high, returns on investment. But, even without the lives in the balance, the big money story told is high drama filled with ethical challenges and clear winners and losers.
Physicians/scientists are often the heroes who make scientific advancement possible but are rarely, if ever, financially awarded for their research, dedication, and successes. While their rewards come from new hope they have brought their patients, wouldn’t it be nice in some ideal world if they and, dare I say it, the early risk-taking patients, too, couldn’t share in some of the windfalls? Not that I am suggesting any sudden move in that direction. Such financial arrangements could easily trigger more unintended consequences and ethical problems.
Most patients ignore the Byzantine twists of the regulatory policy. Still, we at CLL Society suggest patients’ voices need to be heard earlier, more loudly, and more clearly by the FDA in the drug development process. The book serves as a helpful introduction to the approval process and a reflection of a time when many believed cooperation between the FDA and the pharmaceutical industry was at its best. Unfortunately, the pendulum may have swung, and drug development may be becoming more challenging today. And that is not good for patients. CLL Society is working with multiple stakeholders to help develop a path that simultaneously protects us and helps worthy drug candidates safely and quickly advance.
Vardi also doesn’t shy away from the ethical concerns in trial design or the larger-than-life personalities involved in this epic story. And the role that personalities and chance decisions, and sometimes dumb luck played in this ultimately positive story.
Suppose you’ve been a long-time reader of CLL Society. In that case, you will recognize the voices of many of the book’s protagonists, including yours truly and our support group leader, Terry Evans. In addition, many doctors (Byrd, O’Brien, and others) will be familiar names.
I am proud to have been a minor player in this story. I feel lucky to know nearly all the individuals in the book and to have lived through this amazing period when the biology of CLL / SLL was cracked open and new therapies burst on the scene.
It is not an exaggeration to say that there would be no CLL Society without the birth of these covalently binding BTK inhibitors. Our nonprofit was born out of the need to tell this story so that all might benefit from these breakthroughs. Ibrutinib saved my life. My wife and I wanted to do what we could to make sure everyone had the same chance that I had.
I am in debt to the cast of “For Blood and Money,” as are many thousands in the CLL / SLL community.
I am grateful to Nathan Vardi for illuminating this incredible story’s corners, and I highly recommend his book.
Watch our interview below.
If you want to purchase the book directly from the publisher, click here.
Click here to order the book from Amazon.
For an excerpt from the book, click here.
Happy reading.
Stay strong. We are all in this together.
Brian
Brian Koffman MDCM (retired) MS Ed (he, him, his)
Co-Founder, Executive VP, and Chief Medical Officer
CLL Society, Inc.