I DISSENT: PART ONE
A Patient Advocacy Manifesto.
This is the first part of an eight-part series.
PREFACE
I SING THE BODY ELECTRIC
Humanity has been enraptured by electricity for millennia. The ancient Greeks used electric rays, a type of fish, to treat gout and numb the pain of childbirth and operations.
Equally intrigued, ancient Egyptians stood on electric rays to control pain.
Walt Whitman wrote, “I Sing the Body Electric” in 1855.
In 1899, Tesla found that the earth was “literally alive with electrical vibrations."
“If you want to find the secrets of the Universe,” he said, “think in terms of energy, frequency, and vibration.”
Now, we are in clinical trials treating disease with electricity.
Bioelectronic medicine is a relatively new field of medicine, not more than 20 years old, that represents a convergence of molecular medicine, neuroscience, and bioengineering. Its central idea is that injury and illness can be treated by carefully targeting the nervous system using devices.
Rather than suppressing the patient’s immune system with biologics and immunosuppressants, instead, by modulating the brain’s inflammatory signals traveling through the nervous system to the spleen and other organs, bioelectronic medicine allows the body to achieve homeostasis when inflammation goes into overdrive.
At the height of the Covid19 pandemic, there was a lot of talk about “cytokine storms.” That’s the same thing as the body’s inflammatory reflex “over-responding” to disease and injury and going “off the rails.”
That’s what bioelectronic medicine seeks to control and set right.
The need for this revolutionary field cannot be overstated. According to the Rand Corporation, “nearly 60% of Americans have at least one chronic condition, 42% have more than one, and 12% of adults had five or more chronic conditions.”
Up until the advent of vaccines and antibiotics, the leading cause of mortality was infection. For the last century, however, it has been inflammation. Worldwide, chronic inflammatory diseases kill three out of every five people. Heart disease, diabetes, stroke, and countless other inflammatory conditions have led us to the inflammatory pandemic we find ourselves in today.
One in four deaths can be attributed to heart disease, by far the leader in mortality with one person dying every 36 seconds from it, costing the US economy $363 billion between healthcare services, medicine, and lost productivity due to illness and eventual premature mortality. Diabetes plagues 37 million Americans; 96 million Americans are pre-diabetic and 1.4 million are newly diagnosed each year, all the while costing the US economy $327 billion in medical costs and lost wages.
Meanwhile, one in four Americans has arthritis at not only the cost to their livelihoods but also $140 billion to the US economy for health-related costs and $164 billion in lost wages due to disease in 2013, totaling 1% of our total GDP. What’s more, those with rheumatoid arthritis have a 32% excess risk of mortality due to their disease. Further, three million Americans have inflammatory bowel diseases, such as Crohn’s disease or ulcerative colitis. Risks associated with having IBD include abscesses, fistulas, strictures, life-threatening bowel obstructions/perforations, blood clots, sepsis, colon cancer, and more.
Those with inflammatory diseases like rheumatoid arthritis and inflammatory bowel diseases not only face increased risks of cardiovascular disease and other comorbidities, but they also have a greater risk of rare lymphomas or fatal infection from the treatment options available to those with autoimmune and inflammatory diseases.
Bioelectronic medicine is big news. It will free up our dependence on drugs and reshape the future of healthcare. My pioneering peers and I who participated in early clinical trials are living proof that it is possible. Imagine a world where patients aren’t dependent on expensive pharmaceuticals that drive up insurance premiums, and where their diseases aren’t just hardly managed, but treated to the point where they can thrive.
The challenge is to bring this field to more patients and physicians, where there is great need as well as great opportunity.
PART ONE
“...for we meet in an hour of change and challenge, in a decade of hope and fear, in an age of both knowledge and ignorance. The greater our knowledge increases, the greater our ignorance unfolds.” ~ JFK
OUR APOLLO MOMENT: A 21ST CENTURY RENAISSANCE
Society is currently at a tipping point, walking a fine line between fact and fiction, science and pseudoscience, compassion and condemnation. There are few certainties that people across the spectrum of backgrounds can grasp. They are often ‘talked at,’ which has resulted in a combative, skeptical, defensive culture that questions and argues even the simplest of truths.
We are currently on the precipice of a new era of scientific exceptionalism, a Sputnik moment for Americans to come together and launch a new Apollo mission: to bridge the gap from science to society and redefine the conversations around healthcare, research, and patient advocacy.
What made the Apollo mission great was that the mission was universally beneficial to all parties, even those not boarding the Saturn V.
All of us were Americans, coming together to go to the moon.
I BELONG TO THE PEANUT GALLERY, THEREFORE I AM.
Before we achieve the level of greatness of those who came before us and set out on our own Apollo mission, we must reflect on where we might have lost the will to accomplish greatness somewhere along the way. To do so, we could benefit from an educational model called backward design; to identify where we went wrong, first, we must look at where we are now, and work backward.
As we examine the political rhetoric today, it is easy to see that both democrats and republicans stoke fear in their base by suggesting that the other side is ‘dangerous,’ should be feared, and will lead us down the slippery slope of totalitarianism.
The further in time we move from the last world-altering totalitarian regime, the more comfortable we get in thinking it can never happen to us – but if it did, it would definitely be the other party’s fault.
What’s interesting is that the same can be said for science; the more distance we have from the last terrible infectious outbreak that killed, crippled, or cognitively impaired the population, the more comfortable we get in denying the science that has allowed us to live longer and healthier than any generation that has ever existed before us.
The adage ‘history repeats itself’ is generally only true because humanity has two distinct character flaws that are most fatal when paired: hubris and a short memory.
In an analysis of Hannah Arendt’s book, The Origins of Totalitarianism, the online magazine Farnam Street writes that “it is simple to isolate people who already feel isolated.” Arendt writes that this sense of individual isolation leads a person to “derive(s) his sense of having a place in the world only from his belonging to a movement.” Further, having a sense of belonging in that movement results in adherence to the beliefs of that movement and “demand[s] total, unrestricted, unconditional, and unalterable loyalty of the individual member.”
Thus, much like the new requirement of charging private businesses with the task of policing government mandates, the movement encourages its participants to guard themselves, and each other.
In today’s world, that includes the potential for an identity group’s piling on and cancellation of individuals who differ from the prescribed set of rules and beliefs of the larger collective group identity, sometimes beginning with private conversations where the individual is told to stay in line, lest be cast away – but always ending with public shaming in both the cyber and media town square.
While those of us in the free world have the privilege of not living under a government operated by a totalitarian regime, that does not mean that our society, by and large, isn’t currently behaving with a totalitarian mindset. The concern is that the mindset, indeed, is what paves the way to allow for a future where our representatives in office reflect the mindset of those who elect them — if that has not already begun to happen.
For those of us born in the 1980s who have only known America to be a great superpower, we have had the comforts that go along with that. As the most highly graduated population in history with the greatest creature comforts ever experienced by humankind, our deep, tribal, intrinsic, biological need wired into our evolution still seeks conflict to define our purpose and survival, and therefore, has enabled us to over-inflate dilemmas and disagreements into crisis and catastrophe.
If we examine the history of revolutionary discoveries and renaissances, it’s clear that a straight line can be drawn from periods of terrible worldwide tragedies and traumas (whether from pandemics or wars) to the years after leading to an explosion of art, literature, science, romance, and reason. After our last World War, in the years that followed, the world saw everything from great investments in science and education, to the unleashing of pent-up energy that flew out of fingertips and onto guitar strings, and with it, sex, drugs, and rock n’ roll. Some traditions were lost, new ones were gained, and friction between those who wanted to hold onto familiarity buckled with those who ached for a different tune to strum to – or a different celestial body to propel toward and set foot on.
What’s important, though, is that those frictions are allowed to be fraught. The Big Bang wasn’t peaceful either, but you and I are only here today because of it. Imagine how boring life would be if we all thought the same way – that’s nothing worth writing a song over.
In the last ten days from the time of this writing, only a few months into 2022, we in the West have watched in horror the terror of Putin’s War against Ukraine. From our screens in every room and in our pockets, we are witnessing the importance of freedom of personal sovereignty and the necessity of having a diversity of ideas, a concept hard-fought and paid for in bloodshed long before our time.
As history repeats itself today, those of us on the sidelines across the spectrum of ideology, race, class, and gender, watch in awe of the Ukrainian people, led by the Churchill of our time, show us that some things in life are worth fighting valiantly for – and may we not miss this moment as the unfortunate and tragic reminder to resituate our perspective for how we define crisis.
For a while now, the Peanut Gallery has been given the microphone and has dictated the discourse. Following a multi-year pandemic and approaching the potential for a Third World War that could, this time, fossilize humanity itself among the dinosaurs, I am grateful for those vocal few who have fearlessly decided to provide a new path forward, a return to reason, and follow the healthiest of traditions following a collective world trauma: a needed renaissance.
IDENTITY – ’86 THE SELF.
We are living in a time where patient foundations and pharmaceutical companies are benefitting from the larger cultural rhetoric permeating the 21st century's collective sense of self, i.e., identity politics: that we are defined by the presumed stereotypes of our fixed traits, and that we collectively agree to a prescribed set of views based on our race, sex, orientation, and ethnicity, and the intersectionality of our identifying factors.
The prescribed set of views is based on classic stereotypes of each group and the historical societal limitations that have been imposed on each group, or the historical privileges of another group. Anyone who belongs to the identity/category of that group, but who attempts to overcome those societal limitations, is outcast and othered.
Further, a person with one identity who also belongs to a group that has been labeled as antagonistic toward that the identity, as described in this essay about ‘Black Lives who wear Blue,’ is often ‘othered’ as well. The targeted racism that black officers face from their white colleagues and superiors is not allowed to be represented by the protections or outcries of the larger group identity, as one well-known advocacy group told a black trooper that they could not represent him to fight against the racism he faced – because he is a cop. This draws the line of distinction in the sand: you can be black, or you can be a cop, but you cannot be both.
In a culture that has been encouraged to compartmentalize groups of people based on their fixed traits, it is not surprising that this philosophy has been internalized to include unfixed traits: democrat or republican, privileged or disadvantaged, healthy or sick. The problem with doing so is once we accept a belief, zip code, or pathology as our identity, we are less inclined to deviate from it.
THE PRINCESS WHO ILLUMINATED THE PALACE
Before we go to the moon, I want to tell you a story about a young woman whose life has been forgotten by most history books: Princess Ka’iulani, the last heir to the Hawaiian throne.
The niece of King Kalākaua and Queen Liliʻuokalani, Princess Ka’iulani was born in 1875 to Princess Miriam Likelike and Scottish businessman Archibald Scott Cleghorn. She spent her younger years enjoying all that living in the islands had to offer – she played the ukulele and the guitar and was quite athletic. She enjoyed equestrianism, surfing, swimming, croquet, and canoeing – once stating that her mother taught her to swim before she could walk. I know that sounds like hyperbole, but I’ve seen Hawaiian kids in the water and can confirm this is probably true.
Sadly, her mother died when Princess Ka’iulani was only 11, and two years later, she was sent to Europe to complete her formal education to prepare her to take over the throne when her time came.
In 1881, her uncle, King Kalākaua, traveled to New York City and met Thomas Edison – and because of that meeting, the Hawaiian palace had electricity before the White House even did.
In fact, in 1887, it was Princess Ka’iulani herself who flipped the circuit at the Nu’uanu Electric Light Station.
In 1893, the Hawaiian kingdom was overthrown. In the years that followed, she lobbied Washington and President Cleveland to spare her beloved islands and reinstate the monarchy, but all to no avail.
During those same years, she contracted the flu seven times, followed by a series of symptoms including headaches, weight loss, eye problems, and fainting spells. In January of 1899, she fell ill again, and soon was diagnosed with what we would now consider rheumatoid arthritis but at the time was called ‘inflammatory rheumatism’– her joints swelled, she became bedridden, and inflammation attacked her heart.
Two months later, on March 6, 1899, Princess Ka’iulani died at her home at the age of 23 from complications due to inflammation.
When Princess Ka’iulani died, her political opponents who she spent the last years of her life rallying against said that despite their differences, it was “impossible not to love her.”
Now here we are, one hundred and twenty-two years later after the death of the Princess who illuminated the palace – in clinical trials to treat disease with electricity.
“Part Two: We Go to the Moon” of this series to follow tomorrow.