Let this be a wake up call to the world, or at least anyone who reads this piece—gone are the days of treating the “patient.” That word is spun around faster than a regulatory attorney’s head when confronted with change.
In my previous article, “It’s The Patient, Stupid,” I made a specific point to recognize that operating in a vacuum does no one any good, and that there is a huge divide between whether you think you have a good idea and whether you actually do have a good idea to improve our broken healthcare system. Unfortunately, too many people silo themselves in the former and it’s a damn shame. They never once even consider the end user(s) as part of their “game-changing, paradigm-shifting, industry-transforming killer app.”
The divide between what you think and what is true is determined by the free market, vis a vis the patient. But the patient isn’t one person anymore. And their influences, key drivers and outcomes are nuanced and highly individualized. We know there’s a panoply, nee a cornucopia, of mitigating factors that contribute to improved outcomes, some ethereal and intangible (spirituality, faith, mind-body) and others flesh and bone, meaning, the voice of the voiceless caregivers.
In any case, regardless of what these mitigating factors are, it is the caregiver (of any age, but—specifically in this case—the young adult caregiver) who has gone underserved, underappreciated and under recognized by the healthcare-opoly for far too long, to the point where continuing to deny that they matter as key influencers to better outcomes will only further undermine improvement in outcomes for millions.
In case you missed it, The Sandwich Generation (TSG) is just that: A generation of people who care for their aging parents while supporting their own children. And guess what? A significant percentage of TSG is largely young adults in their 20s, 30s and 40s—millions of them living and breathing before our very eyes. And as cancer diagnoses inch younger and younger, so does the caregiver.
Caregivers Deserve—and Need—a Voice
You may even be a member of TSG without even realizing it. Are you 35 and your dad has prostate cancer? Are you 17 and your mom has breast cancer? Are you 27 and your child has cancer? You are TSG and you deserve a voice.
It is estimated that over 80 million Americans comprise TSG and they are wholly disregarded by industry because we’re supposed to only “focus on the patient.” Well, the patient doesn’t want you to only focus on them, they want to know that mishpacha (family) matters. Quality of life is tantamount to quality of care, and that care extends beyond the patient to include those who go without thanks.
Today’s patient opinion leaders may not actually be patients. I suppose you could call them “caregiver opinion leaders” but that is semantically irrelevant to the value they bring to the table. Where are the caregiver platforms, social services, social networks, peer support groups, evidence-based survivorship programs? Do they exist? I hope so. Perhaps in pockets but certainly not marketed well or centralized to say the least.
One of our community members is a young mother whose 21-year-old daughter has been in and out of treatment for brain cancer. In her words, “Cancer is a family disease. The role of the caregiver, whether a mother caring for her daughter or a daughter caring for her mother, needs to be recognized by the healthcare industry. No one chooses for this to happen but we’re here and we need support, too.”
Caregivers matter. And young adult caregivers, e.g., TSG’s lower range, are invaluable capital to an otherwise barren landscape.
Stupid Cancer was originally founded in 2007 to give a voice to young adult cancer survivors like myself, one of the 72,000 Americans diagnosed annually in the prime of their lives between 15 to 39 years old. A minute later, the mission and brand was also speaking on behalf of the voices of young adult caregivers (mainly supporting their fellow young adult spouses, partners, siblings and friends).
For years, we were a voice for the 28-year-old newlywed wife whose 30-year-old husband was diagnosed with colon cancer during their honeymoon. Or the 21-year-old college student who just met his girlfriend the week before her diagnosis of cervical cancer. Or the 37-year-old mother of surrogate twins whose partner of five years is diagnosed with terminal brain cancer.
Today, Stupid Cancer advocates on behalf of TSG, the millions of Americans who are young adults affected by cancer regardless of how they are affected. We are nearing 14 million cancer survivors in the U.S. alone, 90% of whom are over the age of 50. That’s a lot of young adult children and grandchildren affected by those diagnoses.
What role do they play? We know. Do you?
It’s time to think outside the traditional realm of not just who caregivers are, but the age relevancy of those individuals.
It truly is the young adult caregiver, stupid!