Yes, one nanometer at a time.
I had an encouraging zoom meeting with a University of Chicago oncology team and a brave friend who ultimately lost her oh-so-healthy-until-he-got-cancer husband last year. He put up a good fight, within the boundaries of western medicine. He had access to “the best” care and trusted his doctors. He lived with enormous pain and under very difficult physical circumstances following multiple surgeries and harsh chemotherapies for appendiceal cancer. He hung on for the sake of his young family, waiting for the next cure or idea until he couldn’t anymore. Traditional care took its toll on his body, one that would be the envy of any young dad before that all began.
So what was encouraging? The team asked to hear my story and learn about integrative care and what they might do in a new cancer center they are building. Why? They want contributions, of course, but now people who are making these contributions, like our friend, demand more from these doctors. They’ve seen what cancer treatments do to their loved ones, and they want a better way. This is part of how western medicine will change.
There are conversations happening at the Cleveland Clinic as well. Parents still advocating for their kids, whose care was bungled in practical ways that can and should be avoided for others. Patients who are watching friends receive alternative care are taking those stories to their doctors. I have another conversation (to be scheduled) with the head of oncology with the Cleveland Clinic. Will he listen? I don’t know, but I remember him to be an empathetic guy when he treated my friends several years ago. Hopefully, that compass remains.
In having these conversations, two “barriers” to integrative care seem to come up over and over.
- The need for “evidence-based medicine”
Let’s dispel these myths right now.
The Illusion of Evidence-Based Medicine
Evidence-based medicine was probably constructed to protect patients initially, under the banner of doing no harm. Doctors are bound by their oath and their hospital systems (especially the legal and compliance groups) to only offer to patients that which has been proven through research to have positive results. The problem is that research is a human endeavor with a variety of purposes, starting with profit for pharmaceutical companies, including funding for academic laboratories, and ending with new drugs for hospitals to use with patients. The aims are patentable products that confer an advantage, but it’s acceptable and common that the product is a me-too drug, and the advantage is a few more weeks of low-quality life to patients who are already suffering greatly. That’s an all too common experience for us, despite the large-scale, multiphase, and multiyear research to get these chemicals to market – meaning, into our compromised bodies.
Even research professionals are acknowledging the illusion of evidence-based medicine now. As a published Ph.D. scientist, cancer patient, former McKinsey partner/businesswoman focused on helping large organizations change, and successful entrepreneur, I agree with and have written similar arguments for why cancer research and treatments aren’t as brave as they need to be. If there is any sense in a “healthy woman like me” getting this cancer, it’s to bear witness from the inside-out with all of that expertise.
The authors of “the illusion of evidence-based medicine” hit the nail on the head, pointing “to 3 significant issues currently destroying the integrity of evidence-based medicine: corporate interests, failed regulation, and the commercialism of academia.”
Yes, yes, and yes. The bottom line is that evidence-based research did not save our friends and was not saving me. Toward the end of my time in western medicine, I would have opted out of the few weeks of painful time conferred by this or that drug in favor of a peaceful passing in front of our children. Their definition of success was not mine, at all.
On the other hand, there is plenty of evidence – which is way more than anecdotal because of the volume of us having to go elsewhere rather than die badly – for integrative oncology conferring meaningful quality of life and a chance to live despite cancers that are typically death sentences. The reason it’s not included in the conversation of “evidence-based medicine” is that the pharmaceutical companies cannot fund large studies with the outcome of patenting a particular me-too molecule they want to sell as a new drug. The integrative studies are published, however, and the integrative oncologists have been trying to talk about them for years, in the literature and at conferences. Dr. Slocum here in Istanbul has produced some of this research and shared remarkable remissions with stage 4 patients with difficult cancers (pancreatic, metastatic breast, etc) traditional oncologists had left for dead.
The truth is that people in western medicine are hiding behind the moniker of “evidence-based medicine” because change is difficult, their training doesn’t support any other way, the system doesn’t allow innovation, and/or to protect the cancer industrial complex which is so profitable.
The True Costs of integrative care
It costs less per cycle to treat me here in Istanbul than it did in the United States. Not all insurance companies pay for integrative treatments, but they should. The important question is what is the difference between the cost of traditional treatment and integrative care. In addition to the chemotherapies, which are standard, here are the therapies which make the treatments more effective and protect my healthy tissue:
- Nutritional advice = $0. Here, the conversation with the doctor was short and focused on clean, healthy, plant-strong keto, on which I’m well educated through prior experience and the wonders of the internet.
- Supplemental and off-label pharmaceutical support = $less than patented pharmaceuticals
- Nutritional infusions = vitamins, antioxidants, both of which are standard, not patented and so certainly less than the next greatest me-too pharma concoction
- Hyperbaric oxygen = soft shell or hard shell chambers; there are ~4 here, the cost of which is amortized over hundreds of patients and many years
- Local and full-body hyperthermia = basically hot pads and soft shell saunas, there are ~4 here, the cost of which is amortized over hundreds of patients and many years. Many people, including us, have saunas at home for reasonable prices. Here’s one if you’re interested. It’s not cheap for an individual, but they last for many years and confer great health benefits to the entire family. Certainly, this is not out of range for a “world-class cancer center.”
- Terrain blood testing = a handful of smart add-ons to a CBC to help patients achieve precise support and results
The truth is that none of this is terribly expensive and is certainly in reach of a “world-class cancer center” soliciting large contributions to honor patients who have passed. All of these therapies are used in a variety of ways elsewhere, and none does harm. Can we treat cancer with just these and no surgery/radiation/chemo? Not usually. Not yet, but do these therapies confer a significant advantage for quality of life for anyone going through those more traditional treatments? Absolutely. Positively. Yes.
The true and larger costs are mental and emotional
When doctors bring up costs, they are right, but it’s not about $currency. It’s about the currency of empathy, actually, of which there are mental and emotional components in this case. Mental, because it requires a reeducation of MDs and an overhaul of the medical school curriculum, focusing from the patient backward again rather than the market for pharmaceuticals. Emotional, because it requires admitting that the way we’ve been waging the “war on cancer” has not worked to prevent or treat this epidemic affecting increasing numbers of us and our families.
Having these conversations has sharpened my own sense of the challenges doctors face as they even consider generative changes to the medical system. Even when – especially when – they are in charge, these barriers loom large.
But, the fact that these conversations are taking place at all is a positive sign and reminder that even as we feel most vulnerable, we patients and families have power. Change will happen. People will vote with their feet. The Centers that truly help patients will emerge winners, and with the flow of information being swift and transparent now, we will know who they are.
It takes a lot to change large systems, but they will either change or die of their own weight. As a patient, I’m not nearly alone. There are many more people seeking and cobbling together integrative care right now. I hear from them all the time. Our stories are not anecdotes anymore. They are becoming common sense, and we are building evidence, not sponsored by Pfizer or Merck, whose intentions we are starting to question anyway. My professional career has been focused on helping organizations, often large ones, make big positive changes. I know from decades of experience how hard it is. I am hopeful but realistic.
Change is coming, one nanometer at a time.
Thanks to Rebecca Shanberg Polsky, exceptional friend, mother, true healthcare advocate, and director of Do No Harm, for sharing the article on evidence-based medicine as well as her passion for change with me.