A Persistent Patient’s Story

The news that the Galleri blood test --- which can detect DNA of more than 50 different types of cancer in the blood stream before symptoms otherwise appear – failed to show a 20% percent reduction on stage 3 and 4 cancer diagnoses among 140,000 Britons over 3 years, crushed the stock price of its parent company, Grail, Inc.; it’s down about 50% since last week.

This caught my eye because I have first-hand experience that the Galleri test works. I was one of the first people being served by a major research hospital system in Chicago to take the test – I took the test in connection with my annual physical in September 2023 -- and the test results indicated there was a “high likelihood” I already had cancer. I had no symptoms whatsoever, and this was the first “positive” test result anyone in the hospital system had encountered.

I read the NY Times story about the British trial, and saw a distinguished doctor quoted saying that Galleri is “not a very good test. This doesn’t support rollout with the American health care system.”  I beg to differ!

Over the 18 months following my positive Galleri test, I met with almost 20 distinguished doctors and even more nurses (who it turns out are a good source of information) across five renowned research hospital systems in four states; what I learned about the economic incentives and the structure of the cancer business has interesting public policy implications too.

First, the basic facts with respect to my cancer journey. After the Galleri test results came back indicating I probably had head or neck cancer, I had a series of appointments with the experts at my “home” healthcare system, but they were unable to find a tumor; the concluded it was a “false positive” test result. I persisted, had a tonsillectomy in May, 2024 for a biopsy, cancer was discovered in both tonsils, and at the end of July, 2024 I underwent surgery to remove some additional tissue adjacent to my tonsils and more than 70 lymph nodes on both sides of my neck; cancer was found in two of the lymph nodes.  I opted out of chemo and radiation therapy and have not had a recurrence of cancer – yet!

What I learned along the way is interesting and has public policy implications.

1. “Doctors don’t like blood tests” a nurse at NY’s top cancer hospital told me, and I found that to be true within my pool of twenty doctors. Blood tests are not perfect; the results may indeed include false positives and false negatives, which put the doctor at risk of providing too much or too little care.
2. Doctors, even doctors at top research institutions, do not all embrace innovation. For example, my first surgeon observed in October 2023 and again in March 2024 that one of my tonsils was slightly swollen. As it turns out, tonsils can swell for reasons having nothing to do with cancer. Still, I had to talk the surgeon into taking my tonsils out to see if there was a tumor hidden within – because, as he later told me, “I just didn’t believe in that test. It sounded too much like Theranos.”
3. Doctors are now predominantly hospital employees, not entrepreneurs. Obamacare’s industrial policy was to change hospitals from utilities used by independent doctors responsible for patient care into the primary node for delivering, and controlling, health care services. So, over the last 15 years, doctors have sold their practices and become hospital employees.  Now, almost 80% of doctors are employees of hospital groups and other corporate medical providers.
4. Doctors, like other employees, do what their employer tells them to do. Senior management at every hospital group in America has the same goal: provide health care services in a manner that maximizes revenue, minimizes costs, and manages risks. There’s nothing inherently wrong with this, but it’s important to understand how this drives individual care decisions – especially with respect to emerging technology.
5. Hospital groups live by the golden rule: the federal government provides most of the gold to healthcare providers, so hospital groups take their cues from the government. Hospitals provide care that’s reimbursed in accordance with the government’s approved protocols. Hospitals are nominally independent organizations, but they are the cat’s paw of governmental control; Obamacare effectively socialized medicine through financial and risk management incentives, instead of via command and control.
6. Oncology Boards are risk management tools for hospitals. Every one of the five premier hospital groups with which I consulted bragged that my case – very little, and very early discovered cancer – would be considered by that hospital’s “oncology board”, which consisted of all the oncologists at the hospital. This is sold as being a way to put the best minds in the institution on my case; sounds great, right? Instead, these boards help the hospital’s management discover and manage risks arising from the occasional circumstance in which a doctor doesn’t want to follow “the protocol”.
7. Protocols rule; protocols are government-approved procedures for dealing with a particular type of cancer. For head and neck cancer, it’s literally an 8.5 x 11 inch landscape document that maps out for each circumstance, a particular type of treatment. The protocol is government approved color-by-number medical care.
8. Protocols change slowly, very slowly, through studies. When creative doctors believe there’s a better procedure to care for a condition, they seek government approval for a study, which itself will have specific parameters for a timetable, patient qualifications and so forth.
9. Most patients will never hear about studies being conducted at other institutions; doctors at any given institution may or may not be keeping up with research elsewhere, and do not have an economic incentive to refer patients to other hospital groups where a study may be conducted. Plus, it’s not easy to find what’s being tried, and where, nor is it easy to get into a study that may be occurring on the other side of the continent.
10. Once a study is complete, even if it’s a “success”, doctors won’t use the procedures studied until the government approves a changed protocol. I found some interesting studies applicable to my cancer and, with some wrangling, managed to get appointments with the researchers. The doctor’s first recommendation for care was informed by the results of a study she had published a month earlier. But, after two visits to the oncology board, the care recommendation reverted to the protocol.
11. Government works slowly, so innovations take years to be worked into the system. Tech companies like Grail, Inc., move fast, developing ideas and products far faster than the government works to understand, assess and approve those innovations. Hospital companies, with one eye on reimbursement rules and another eye on litigation risk, are loath to jump ahead of the plodding government, and not all doctors are enthusiastic advocates for change.
12. There is no protocol for very early detected cancer. It took experts at a top institution 8 months to find the cancer detected by the Galleri test. If they believed in the test, if they risked absorbing the cost of non-reimbursable care to conduct tests that were medically unnecessary under protocols that did not account for the blood test, the timetable would have been far shorter – and my care may have been easier.
13. There is no protocol for almost undetectable cancer. The great news about the Galleri test is that it discovers cancer before the patient has any symptoms. The bad news is that, currently, doctors don’t know what to do about small amounts of cancer, except default to protocols that were designed for larger amounts of cancer detected in the previously “usual” ways. Top doctors at top institutions were recommending I get twice as much radiation and chemo than if I had large amounts of cancer. When I would ask, “let me get this straight, I would get half as much radiation if I had twice as much cancer – help me understand how that makes sense?”  The docs knew it made no sense, but that was the protocol, they would say, looking uncomfortable or shrugging.
14. Cancer doctors have one job: kill the cancer now. They are not tuned to balance the cancer-killing benefits of an incremental treatment against the quality-of-life costs of that incremental treatment; they are tuned to minimize the odds their cancer care fails. Doctors do not bear the future costs of today’s care -- they discount those costs more than a patient suffering those future costs will. So, patients who wish to eliminate cancer at the lowest possible long-term cost to quality of life need to do their own math and own the risk/benefit choices inherent in care decisions.
15. The good news is that a surgeon at the fifth famous hospital group understood the problem – I had very early detected cancer, and almost undetectable remaining cancer after the biopsy. The doctor, with a smile, just redefined my case to fit within a different protocol, one that the doctor thought would make more sense under my circumstances. And she smiled again when I turned down chemo and radiation “to make sure the cancer’s really gone”, after I did independent research on the costs and benefits of the different alternatives.

The doctor used independent judgement based on years of practice after a discussion of costs and benefits of different approaches; if you thought that’s how our “private” healthcare system works, it’s now the exception not the rule.

I don’t know Dr. Richard Houlston of the British National Healthcare system. He is no doubt “an expert!” – and yes we should consider expert opinions, but still always think for ourselves, because there’s a difference between being an expert and being right. 

I know four relevant facts: the Galleri test works: British healthcare system sucks; their doctors, like ours, operate in a system with institutional constraints against adapting to new technologies and changed circumstances like very early cancer detection; and some doctors don’t have a growth mindset conducive to making full and proper use of technological advances.

But, hey, don’t listen to me -- I’m just a persistent patient unafraid to ask questions who had his neck on the line and is comfortable assessing systems and risks. That’s why I bought some Grail Inc. stock in June 2025 and will buy more on this dip, courtesy of the NY Times and Dr Houlston.