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.
* * *
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 NIH further states that, through the discovery of what treatments work best and for whom, outdated trial and error methods would be avoided, thus saving time and money.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.