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Note: Molecular biologist and author Jeff Stewart has worked for more than 15 years as a consultant to drugmakers, examining data on new treatments to fight cancer. Last July, the 50-year-old father of seven was himself diagnosed with stomach cancer. He spent much of the next 10 months on medication, while also writing the new release Living: Inspiration from a father with cancer.
Her book is a collection of life lessons and reflections that « helped me endure tough times and avoid the toughest ones, » she says. Framed as a life guide for her children, it also includes insider advice for anyone facing a cancer diagnosis. The following excerpts have been edited for length and clarity. –Publishers
As a cancer patient, many, many articles about early stage cancer treatments and alternative therapies are forwarded to me. I think every cancer patient has these. I’m public about my cancer, so I get them from more than just friends and family. I also get them from people I’ve never met but are trying to help.
Cancer cures are not just a self-interest. Part of my job for over 15 years has been advising pharmaceutical companies on cancer drugs. My clients have included large pharmaceutical companies and small biotech companies. You would know the names of the big pharmaceutical companies. I have interviewed hundreds of oncologists over the years. Understanding the scientific and commercial potential of a cancer drug is a normal day’s work for me.
How to evaluate experimental treatments? Follow the evidence
Basic rule of cancer treatments: evidence wins. We need proof to believe anything works. This is especially true for cancer.
Step One: Is the Drug FDA Approved?
Phase Two: If the drug is approved, the drug is also recommended cancer guidelines? If the approved drug isn’t within cancer guidelines, the insurance companies won’t pay.
Phase Three: If the drug is neither approved nor in the guidelines, is it in late-stage clinical trials? This usually means stage III. If so, then maybe a cancer patient can join those. If not in late-stage clinical trials, the drug is too early to be tested to help most people who have cancer now.
Surprising result in a test tube? Tell me in 15 years if I’ll still be here. Just starting Phase I clinical trials in people? Still too early to help me. Do you cure mice? Of all the oncologists I interviewed about the mouse data, at least a quarter of them told me exactly this punchline: « I’ve never treated a mouse for cancer. » Ugh, ugh. Funny oncologists. It’s not just cunning. They have a point buried under their tired quip. Most of the things that cure cancer in mice don’t work in people.
It’s worse than you imagine. Almost anything new that comes out of a university is too early to help anyone with cancer now. Worse, almost everything fails. If it sounds tired, I’m sorry. This is the reality experienced by oncologists.
Yes, there have been great advances in cancer treatment. The really promising drugs that can do anything in the short term are already in late-stage clinical trials. Oncologists read. They know what’s coming. Anything early on can’t cure someone who has cancer now. I have to think that one of the worst parts of an oncologist’s job is explaining why a miracle cure early in development holds no promise for a cancer patient today.
The hard truth: Most experimental cancer treatments fail
Here’s what most people not immersed in oncology don’t understand. Even the most promising cancer drugs fail. Cancer drugs have the second worst failure rate of any disease. Only Alzheimer’s is worse.
Think of the tens of millions of dollars spent getting a cancer drug from a university, into cell lines and mice, and eventually into patients to be tested in clinical trials. It’s a huge effort. It could take a decade. Those drugs that are tested on people have won a biotech lottery. For any cancer drug to be tested in people, the science has to be Amazing. Scientists working on the drug believe it is blocking it from working. One could speak of a Nobel Prize or at least of the Lasker Prize. Everything seems sure to succeed. What could go wrong?
Want to guess how many of those « sure winners » end up making it through clinical trials? Seven percent. That’s 7% of the best drugs that came out of the best science, and they were so promising that one drug company invested $10 million to more than $1 billion to test the drugs on patients. Ninety-three percent of « winners » fail.
What about repurposed approved drugs? Approved drugs can be used off-label by doctors. What if, say, an antiparasitic drug cured cancer? Why not take it?
The question is, again, where is the evidence? Cancer drugs are special. State laws require insurance companies to pay for cancer drugs whenever independent cancer guidelines say the drugs should be used. Even if the drug isn’t listed by the FDA for cancer, as long as trials show that the drug works, insurance companies have to pay. Leading oncologists update cancer guidelines whenever the evidence gets good enough.
Because the cancer guidelines are your friend
See where it’s going? For an approved drug to fall outside cancer guidelines, the trials suck.
This is what I do when information about non-standard, alternative or early cancer therapies is forwarded to me: I press cancel. I know, even without reading, the evidence isn’t there yet. Things that look great almost always fail. Anything early on is not helpful for someone with cancer now.
Snake oil salesmen are cancer patients everywhere. They are all over me. These hucksters will make money robbing cancer patients if they can. These hucksters are vultures (or deluded optimists). They have no proof. See above.
Even legitimate innovators have a hard time imagining that it is possible for their cancer drug to fail. But their cancer drug will fail most of the time. It’s not something scientists like to admit to themselves.
If you want to grab an unproven libido enhancer, this is one thing. But cancer? Don’t waste the time you have left.
What should a cancer patient do when standard treatments seem to be useless? What if the odds with standard treatments are so slim that there might as well be no treatment at all? I’d say ask your oncologist if there are any promising late-stage clinical trials you can participate in. This is a perfect question.
A late-stage clinical trial is a cancer patient’s best chance of getting a next-generation treatment before approval. We are in a golden age of cancer immunotherapy. There are promising immunotherapies in late-stage clinical trials. If you’re enrolled in a trial, you’ll not only have a chance at a new treatment, but you’ll help advance the science so future patients can benefit.
Understanding the disease and its treatment can ease fears
If you or a loved one has been diagnosed with cancer, I’m sorry. I’m sorry that happened to you. Cancer is scary. It’s all so complicated that when we receive the diagnosis, we don’t know what to think. We barely know what to try. Understanding cancer and its treatment, even the hard-to-hear stuff, has helped me feel less fearful.
I hope, please, my story helps even if your cancer, your experience, may be different than mine. I’m not going to pretend to be an oncologist and give treatment advice – listen to your oncologist – but if you need to talk, I’m at AuthorJeffreyStewart@gmail.com. I will answer if I can.
What’s next? « Pre-bunking » instead of debunking bad information about cancer treatment
To my colleagues in healthcare: There is an opportunity here for good. The cancer patient needs a trusted, friendly voice to help explain things, available 24/7. The healthcare system is not prepared for that. The void is now filled with fraud and fear.
Cancer patients today are not in a neutral information environment. Instead, cancer patients are inundated with false facts and quackery that promise 100% cure rates. This is the reality we live in.
There is one defense against disinformation that we know works: pre-bunking. We need to stuff cancer patients with facts in forms they can understand before the fraud gets to them. How do we do this without hiring an army of call center oncologists? I hope the AI trained on the best evidence will be a “cancer consultant” who will be there to explain things to patients anytime, day or night.
There is a silver lining for all of us: patients who follow evidence-based medicine have double the chances of surviving cancer, the search found. Proving an AI cancer consultant has a positive effect on treatment compliance or even overall survival in a clinical setting it should be possible with a modest number of patients undergoing clinical trials.
The pieces are there. Done right, an AI cancer counselor could save more lives than many cancer treatments. If I survive my cancer, I hope to join you in the effort.
Jeff Stewart is chief executive officer of Syneos Health Consulting. All views, thoughts and opinions expressed herein are his own and not necessarily those of his employer or others. This essay was adapted from the book, Living: the inspiration of a father with cancer, published by Wadsak-Stewart Press on May 15, 2023. Can be reached at AuthorJeffreyStewart@gmail.com.