"The Placebo Effect"
Updated: Dec 11, 2019
I sat down at table ten, an eight-foot round at the back of the room with a sign on it titled ‘Human-Centered Experience.’ It was a healthcare conference meant to bring together doctors, researchers, entrepreneurs, investors, pharmaceutical executives, and insurance providers to spend a day discussing what’s new in healthcare and how to break down ‘silos’ to bring all of these different sectors together to work toward the common good of the patient.
I chose table ten because of my professional responsibilities as the Director of Education and Outreach at the Feinstein Institutes for Medical Research. My job is focused on patient advocacy, government education efforts, and patient foundation outreach. I came into this position because of my own experience, which you can read about in the ‘FAQ & Disclaimer’ and ‘Blog’ tabs.
Earlier in the day, the Feinstein Institutes’ CEO, Dr. Kevin J. Tracey, gave a presentation on the progress made over the last year in the new field of bioelectronic medicine. As the inventor of this field, he has spent the last thirty years marrying his background in neurosurgery and immunology to understand why the body sometimes creates its own demise through the overproduction of inflammation. I’ve outlined the timeline of his work (and the team that he led) in a separate blog post that you can read by clicking here. Long story short, it led to the understanding of the vagus nerve as the inflammatory reflex and the discovery that electrically stimulating that nerve turns off the overproduction of inflammation in the body. In his presentation, he spoke of how the classic modality of treating illness in the last 100 years has been to identify a target and create a molecule to destroy that target (think antibiotics destroying infection, chemotherapy destroying cancer cells, etc).
That morning, during his presentation, I beamed as he shared this important work and found myself getting teary-eyed, knowing how many millions with inflammatory diseases will benefit from vagus nerve stimulation as much as I have. After his presentation, Dr. Tracey introduced me to the audience as the patient whose story he shared who is now in remission for two years and medication-free, relying only on my vagus nerve stimulator.
As the room began to fill back up after lunch, I saw two gentlemen survey the tables, trying to decide which to choose. We made eye contact, and they sat down directly across from me.
"Ok everyone, introduce yourselves and share why you chose this table for the Human-Centered Experience."
One of the gentlemen was one of the first to share in the counter-clockwise introduction. Never breaking eye contact with me, ten of us at the table listened as his eyes bore into mine his discontent with one of the many presentations of the day, and how “though Dr. Tracey may say that molecules and targets don’t always work, they often do, even though that hasn’t been the case for you.”
He went on to say that he has spent his career developing molecules for certain targets and that is why he chose this table – because his work has mattered for many patients.
I smiled and kept eye contact with him throughout his entire ego-laden spiel, nodding along, letting him think that he showed me.
As the introductions continued, another gentleman, a doctor that now works in pharmaceuticals, shared about the cost of healthcare as a major issue in this country and that he chose this table, the Human-Centered Experience, because he wants to have a conversation about how we need to make healthcare more affordable for patients. I smiled. It’s not every day someone in pharma wants to cut their own costs. I appreciated his sincerity.
Soon, it was my turn.
Keeping regular eye contact with the scientist across from me, I said:
“Hi everyone, I’m Kelly Owens. I work as the director of education and outreach at the Feinstein Institutes, and as you all now know, came into that position because of my experience as a patient that has benefitted from bioelectronic medicine. While I’m not here to demonize biologics, as I do know that they have positively impacted many patients with inflammatory diseases, my job is to ensure that the research coming out of our institutes is made available to patients who, like me, need alternatives to what’s currently available. The fact of the matter is that one-third of patients don’t respond to biologics and immunosuppressants, and then are faced with not only the symptoms of their disease, but the side effects of these drugs, which personally made me feel like a nuclear power plant from the immunosuppression. Further, to build on Dr. ____’s point, the cost of healthcare in America is crippling not only the everyday American, but especially the American patient that requires the most expensive drugs on the market: biologics. Further, let’s not forget the economic cost of the status quo as we know it: in 2013 alone, rheumatoid arthritis cost our economy 304 billion in medical costs and earnings losses, as well as the indirect cost patients with rheumatoid arthritis face every year of 252 million due to work absenteeism. Not to mention the 43% of patients who can’t afford their prescriptions, and the 9% that go without their drugs because of the cost. Bioelectronic medicine stands to change that paradigm, as I can personally share with you that this year my medical expenses have consisted of a $19 bottle of Zyrtec for spring allergies. So that’s why I’m at this table – the Human-Centered Experience – because my experience as a patient has informed me that patients need more options to improve their quality of life and reach the human potential that many of them can’t due to their only current treatment options being molecules. Thanks!”
I wish I could say that this was an isolated experience, but it hasn’t been. Over the last two years, I’ve lost count of the number of people that have questioned this field, argued that current treatment options are good enough, and/or suggested that I am only the placebo effect.
When I came back from Amsterdam, my rheumatologist said not to get too excited yet – this may, after all, just be the placebo effect. In a professional setting, I heard a scientist telling someone that Dr. Tracey’s discovery of the connection between the nervous system and the immune system hasn’t convinced her, and that those who have benefitted are an extraordinary example of how strong the placebo effect is. At a friend’s birthday party, a person who works in pharmaceuticals grilled me for nearly ninety minutes, saying that if this really worked, why hadn’t he heard about it on Good Morning America yet? Must be the placebo effect.
While I understand that this is a revolutionary concept and will take time to fully understand and adjust, I find it problematic that a medical professional, scientist, or pharmaceutical exec would be so dismissive of discovery.
Prior to human trials, investigators tested vagus nerve stimulation in vitro and in vivo, meaning that it was tested outside of a living organism (in vitro) and then in animal models (in vivo). It was then also tested in trial patients under anesthesia, who were obviously unconscious and unable to determine their own outcomes. In those studies, the sham control groups did not see their inflammatory levels drop, but those receiving vagus nerve stimulation did.
While everyone is entitled to their own opinions, they are not entitled to their own facts.
So, that’s what we’re here to talk about.
We're here to talk about bioelectronic medicine and the millions whose lives will change because of it. We're here to learn how to be the best advocates for ourselves and others. We're here to talk about what it means to be a patient. We're here to laugh, to develop grit and resilience, and how to effectively raise some hell. We're here to read the riveting research coming out of the Feinstein Institutes, as well as other universities and hospitals that are doing this important work.
Together, we're going to challenge the status quo and disrupt the paradigm of medicine as we know it.