Turn Every Page: Hope is not a strategy
Hope is not a strategy, but it's a great impetus for action
In recent years, when you hear of a physician prescribing drugs for himself, it usually indicates an opioid addiction. It has been 10 years since David Fajgenbaum prescribed a treatment for himself, but Fajgenbaum’s prescription had nothing to do with addiction. Fajgenbaum has Castleman’s Disease, an extremely rare disease—an orphan among orphans—that quickly causes the body to attack itself and leads to rapid organ failure.
Attacks can immobilize someone in a matter of days, and patients often spend weeks in the hospital recovering from attacks as doctors try to use steroids, chemotherapy, and other methods to combat the disease.
Fajgenbaum was a young, healthy, athletic (the quarterback of Georgetown University’s football team in undergrad) man, but even he was quickly taken down by the disease when he first experienced symptoms while in med school.
Fajgenbaum’s story, captured in his book, Chasing My Cure, is fascinating in many respects. The human body is an intricate web of cells, organs, systems, and functions—and it seems like doctors have only started tapping into the depths of our knowledge about the body. What we know now about the body and disease compared to even 20 years ago is mind-boggling, yet physicians report that we still have so far to go. It gives us hope for the future. Diseases that were fatal even a generation ago can now be controlled, monitored, and, in some cases, cured. And some diseases, like Fajgenbaum’s, do not even fit into a clear category (e.g., it’s not clear whether Castleman’s is an “autoimmune disease” or “cancer” or some hybrid).
Throughout his struggle to find a cure, we see the mature life lessons of a 20-something young man. Having what one thinks of as a fatal disease focuses the mind and clarifies things rather quickly. Throughout the story of his illness and attempt to combat it, Fajgenbaum explains many lessons that are useful for life and business.
In discussing the medical intricacies of Castleman’s Disease, Fajgenbaum describes how he ran into several roadblocks along the way, often the result of how doctors approached problems or how people were blinded by their training and the data. For example, when initially researching what he had, Fajgenbaum went to a medical website called UpToDate. UpToDate is a platform where doctors and researchers can post data about diseases, treatments, and any other information they identify. It’s like a reliable and highly technical Wikipedia database. But UpToDate was not up to date. Fajgenbaum found that the data was old and incomplete, which was good because the answer he got from UpToDate was scary. It indicated he had a fatal disease that might kill him within a short time—maybe as little as 12 months.
Even though the UpToDate data was accurate, Fajgenbaum learned early on to trust, but verify. The information was old and incomplete. He had to follow up on things, drill down into the data, and make his own conclusions about the case studies and what might work in his own case.
Fajgenbaum’s diagnosis came when he was in med school, which was one of the best things that happened to him. He had the natural curiosity and skepticism of a student, which led him to find the answers for himself, and to research until he felt comfortable with the conclusions he was drawing.
Today, many people do the opposite. With Google, Wikipedia, and now AI, we encourage people to find good-enough answers, prizing speed over accuracy. If you get an answer that is close enough, it is fine as long as it’s found quickly so you can move on to the next thing. For Fajgenbaum, that was not an option. He was dealing literally with his own life or death. There was no room for error.
For example, Fajgenbaum challenged the prevailing views about markers of the disease. The dominant view when he began his research was that Castleman’s was a “lymph node disease,” meaning that it was a disease that originated or was developed in and by the lymph nodes. He had enlarged lymph nodes, as other patients did, but he questioned the underlying premise: was Castleman’s a lymph node disease, or were the enlarged lymph nodes simply markers of the disease as they are with other infections and conditions? Likewise, when he was about to have an attack, he would develop blood moles all over his body. Were the moles the cause of the disease, or were they signs of other things that were occurring in his body? It was a causation versus correlation question, and no one else was asking the question.
By questioning the premise and remaining open to any conclusion, Fajgenbaum could investigate a variety of possible causes. “Trusting a result only when it’s what you expect and then assuming the test is wrong when you get a result that you do not expect is antithetical to science.” (139) The results you get from a particular test or experiment are the results. The better disposition toward your investigation is to address the actual data rather than rejiggering the test to get to a desired conclusion.
I assume we re-work the test because we are fearful of change or of having our hypotheses proved wrong. But we also do it because we often artificially limit our knowledge to a narrow set of facts or circumstances. Once we get into a profession or way of doing things, we balk at anyone suggesting a different way of behaving. It’s like what Henry Ford supposedly said about developing the automobile: “If I had asked people what they wanted, they would have said faster horses.” Sometimes we are blinded by what we know, and we are not able to see the many possibilities for innovation or change.
One physician told me a story about his treating cancer patients. He thinks outside the box, which allows him to come up with effective treatments based on the patient’s entire history. Other doctors, he said, can be limited by the tests they perform and the patterns they know. One gastroenterologist saw a patient with stomach pain. He performed an endoscopy and colonoscopy, which were both negative. When my friend asked this doctor what he thought was causing the stomach pain, the gastroenterologist simply responded: “the test was negative.” My friend asked again and received the same answer.
When we rely too much on certain tools of the trade (e.g., tests for doctors, document templates for attorneys, Google for everyone), we can lose our curiosity and creativity in solving problems. Like my doctor friend, we should get information from tests, but we should not stop there. We cannot artificially close ourselves off from gathering more information to make good decisions.
One of the roadblocks Fajgenbaum experienced in getting this information was the siloed nature of medical research. A handful of people around the world were working on Castleman’s Disease, but they were scattered at different institutions, and they did not speak to each other, share research specimens, or provide timely insights and updates. This kind of siloing happens in business all the time, and everyone in the business suffers as a result. We do not need completely flat organizations. But we do need organizations that know and promote the value of sharing information across different departments. Different departments have different functions, but collaborating with people from other departments and disciplines can lead to insights that no one could expect. This is one of the reasons that Fajgenbaum created a collaborative organization to address the disease in the Castleman Disease Collaborative Network (CDCN).
The CDCN performs research and provides funding for research into Castleman’s Disease. But even its method of providing grants is different. As Fajgenbaum explains, when there is a disease that is broadly known, people apply for grants to fund their research. The organizations providing the money are inundated with requests. But that’s not true for orphan diseases. So CDCN looked at the potential treatments or research that it wanted to support, and then proactively found people to do the research. They did not wait for applications. They couldn’t. “We needed to rethink the whole operation, the whole field. We didn’t need to build yet another silo.” (143)
This unorthodox grant-funding approach is not something you do if you are acting according to others’ expectations. Fajgenbaum’s friend, Grant, worked with him in the early days of CDCN. Grant had a simple approach: he challenged people’s expectations. When someone would say, “We can’t do that” or “We would never do it that way,” Grant simply asked, “Why not?” That simple question breaks the normal cycle of thinking that keep get people in a rut—“I could never make $— per year”; “I could never get up early”; “I can never lose weight”; “Organizations never do X this way.” Disrupting your normal way of thinking through things by asking “Why not?” not only opens up new possibilities, it often leads you to think of practical solutions to these problems.
Fajgenbaum’s journey is not over. He has found an effective treatment for himself, but it’s not a cure, and it does not work for everyone. He has taken to heart the bible verse, “Physician, heal thyself.” (Luke 4:23) But he would be the first to explain that he is not doing this work on his own. It’s a team effort that involves doctors, patients, funders, and others.
It’s a blessing that Fajgenbaum was a med student when he was diagnosed. He had not yet been fully formed in his profession, he was still inquisitive, he was willing to ask for help, and he knew he did not have all the answers. We should all have the same mindset—that we are all novices and students and that we need to put in the work to learn and grow.
Remember to turn every page. Enjoy your weekend. Please let me know whether you need anything.
Best,
Aaron
*If you have any recommendations for summer reading, please leave them in the comments.