We’re grateful today to have a guest post from Mary Mack, an advocate for safe affordable medicines and health care through the Right Care Alliance. Mary is also living with advanced heart failure and muscular dystrophy, both caused by the same rare genetic mutation.
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In May of 2018, the National Institutes of Health unveiled its strategy to begin recruiting one million plus US participants for a 1.5 billion dollar total, taxpayer-funded study, titled: The AllOfUs Research program. As part of the precision medicine initiative, NIH aims to harness a mammoth-sized dataset that includes historically underrepresented groups in research, thereby producing a database accurately reflective of the US population. Focusing on our individual differences in genetics, life-style and environment, this diverse volunteered dataset would then be better poised to accelerate the development of precision treatments, is the NIH rationale. In return, participants are promised that pertinent information gleaned will be given back to them. NIH states that the study could uncover why we get sick and how we can best avoid preventable illness. NIH further states that, through the discovery of what treatments work best and for whom, outdated trial and error methods would be avoided, thus saving time and money. Many prestigious institutions across the USA, are on board looking to capture volunteers. Social media is alive with clever marketing and feel-good recruitment videos encouraging All Of Us to join, to be “one in a million” and “it takes All Of Us” and that: “The future of health begins with you.”
Amid the campaign hoopla surrounding the All Of Us research goal of advancing precision treatments and future cures, there exists a cruel paradox: the USA’s deadly for-profit healthcare system is pricing many folks out of old, efficacious and necessary medicines. These are life-saving, cheap to make treatments, appropriate to the biological needs of human beings from all walks of life. Our government—rather than protecting the public health—has long since given the pharmaceutical industry pricing carte blanche and— predictably—the industry has taken full advantage. Companies have been in profit-seeking mode—unabated—for decades. Simply put, Americans are being price-gouged to death, while our government looks on. Nowhere is this more apparent than in analog insulin pricing and the recent deaths as a consequence of people forced to ration their insulin. Price-gouging deaths are also occurring in the arena of cancer drugs, HIV drugs, anti-rejection drugs for transplants and asthma medications, to name a few.
Does it make good sense for the NIH to embark on a billion dollar project focused on accelerating precision innovations when the average US taxpayer—of every conceivable genetic makeup and background—can’t afford current needed drugs? Won’t many—if not most people— be priced out of future precision therapies as we are currently priced-out of the basics now? Is it reasonable and fair for NIH to embark on a costly mission designed to uncover what future treatments might work best, for each individual, when existing, life-saving treatments that work best for everyone—right now—are being withheld from many? “We're ALL a piece of the American pie, so #diversity is critical for #health research”** goes a recent AllOfUs Research, rah-rah cheerleader-esque, recruitment tweet. Yet, most of the American population pie—in all our diversity—is in serious medical jeopardy; and the NIH’s lack of a robust, diverse research dataset, is not the reason why. Given the reality of USA’s profit-seeking medical industrial complex, it is naive to believe that health disparities will be diminished and that all of us will truly be served through this expensive government project.
Every human being with severe asthma, for example, needs 100% easy access to a rescue inhaler; every human being with insulin dependent diabetes needs analog insulin. Why a condition occurs, if it could have been prevented, and what—if any—targeted precision treatments might be of future benefit are interesting research questions that need answers, but it doesn’t serve immediate need. The medical requirements of the USA’s population —based on what is currently known and relevant to the biology and psychology of All Human Beings—must, first, be prioritized, respected and equally provided to everyone. The USA’s for-profit health system does not do this.
Despite the claims of the NIH, the future of health really begins with enacting legislation to set fair and very affordable prices on necessary medicines and necessary health care. And to make the price-gouging of all care illegal. There is no responsible, nor genuine place, for NIH’s All Of Us Research Program, unless and until the USA finally provides universal healthcare for all of its people, in all our diversity.
In March, we held our monthly #WhyWeRevolt Tweetchat and our discussions were anchored around the work of being a patient. The Twitter community rose to the occasion; here are some highlights from our chat:
Follow the Patient Revolution twitter feed @patientrev for details on our next chat!
Today’s guest author is Carolyn Thomas, a heart patient living on the west coast of Canada, as well as a blogger at Heart Sisters and author of the book “A Woman’s Guide to Living with Heart Disease” (Johns Hopkins University Press, 2017). She’s sharing a personal essay about the influence and power of small gestures in a clinical encounter.
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Last year, I read a compelling patient essay in the BMJ (the British Medical Journal) written by Sharon Roman, a woman who had her first attack of multiple sclerosis at the age of 30. As you can imagine, this means that Sharon has encountered lots of physicians. Those doctors, Sharon observed, hold a unique position in our lives.
After a close friend told her about a distressing encounter with a dismissive physician, Sharon observed:
“Doctors are in a position to sting or to support like few other professionals can, being privy to intimate details and personal history, and knowing things that often aren’t shared with others.
“I have had the incredible relief of hearing the words ‘I believe you’ - as well as the empowering ‘I believe we can lessen your pain with exercise.’
“Belief is key—but not just for patients. Doctors need to believe that they themselves can sometimes be a placebo and influence a patient’s life.”
Surprisingly, even how a doctor’s waiting room looks - whether dark and dated or chic and expensive – can be where that influence can start.
“When my doctors come out to meet me and show me in, their greeting and broad, sincere smile brightens any room to me,” Sharon explained. “No amount of expensive decor could best that feeling.”
I found myself nodding in agreement as I read Sharon’s words. Some of the most unforgettable medical moments during my last decade as a heart patient have involved what may seem like the smallest of personal encounters.
Consider these examples:
- the cardiac nurse who gently held my shoulder as she walked alongside the gurney wheeling me down a long hallway toward the CCU post-heart attack, and whispering softly: "You're in the right place now, and we're going to take very good care of you here."
- my wonderful cardiologist who has a touching habit of greeting me at each appointment by taking my hand carefully in both of his own.
- Tina, my favourite hospital housekeeper, who after 40 years of keeping patient rooms clean and safe, still prided herself on remembering "her" patients' names, seeing them as real persons, and never as just "the MI in Room 8.”
Describing tiny gestures of kindness and caring like these doesn't do justice to the immense impact of such small moments on patients who are ill or scared – and our family members.
And the good news: each gesture takes no more time during a busy person's normal work day than the dismissive and hurtful conduct experienced by Sharon’s friend.
Part of the patient revolution is finding ways to remove the callous from words like “value” and using them to pave the way towards careful and kind care.
How do you spend your time with your patients? With your clinicians?
I’ve read many point of view stories about the deterioration of the patient-clinician relationship, detailed essays about the ways in which miscommunication or lack of communication fail both parties and lead to hurt feelings, regret, frustration, and suffering. But I can’t remember many stories of attempts to repair; to acknowledge, forgive and try again.
In her essay, Trust is the Essence of the Doctor-Patient Relationship, Sharon Ben-Or, MD, a physician who plays the role of patient in this story, details the unique and yet utterly common way in which trust can be eroded and then the simple, yet herculean effort necessary to try and repair it. This is a skill that all of us - patients and clinicians - need to get better at. Having a glimpse into what all parts of that look and feel like, seems like a good way to start.
Have you got a story about trust eroded and trust repaired? Tell us!
We need to be reminded to appreciate what we’ve already put on the loom, and to be patient and supported as patterns emerge.
Join us tonight, January 7 at 9 pm eastern, 6 pm pacific, for the first chat of 2019, centered on the Elegance chapter of Why We Revolt. Follow @patientrev on Twitter for the discussion questions!
In December, we held our monthly #WhyWeRevolt Tweetchat, and our discussions centered around the concept of love and healthcare. Here’s a brief recap of what we covered: